02 August, 2013

Facial flushing due to Mastocytosis; or in simpler words, too many mast cells (mastocytes)



Update: finally got tested for Tryptase and got back on the meds, see update all the way below this post. 
I visited my German dermatologist yesterday. I see him once every 4 or 5 months usually. He is an older
man, very friendly and with a wide general knowledge and a real interest in my rosacea problems. He knows Dr. Chu, who I see once every 2 years in London as well. We sat down and I wanted to ask him for a medication called Celexa; another antidepressant that some people told me helps them cut down on their flushing. I already use 15 mg mirtazapine and find it quite helpful to shunt some of the flushing, but at 15 mg it does the best job for this, yet I feel a lot better and happier on 30 mg. At that dose, I get too red and flushed again however. So I sat down and wanted to bring up the Celexa question, but he started about something entirely different himself, instead, and said he thought that my skin issues might perhaps be related to a histamine problem in the body. As I don't react or react badly to all the antibiotics he has given me so far, some doubts have raised for him whether or not I have solely rosacea. From reading on the forum boards I got the impression that not every flusher responds well to antibiotics and that quite a few get worse from them, but I was happy that he had thought of a new approach. He said that he thought it was well worth finding out whether my body perhaps has a histamine issues, making too much histamine or reacting to histamine with facial flushing.  I am always open for new suggestions and he now prescribed me two strong, new different antihistamines and a stomach protector, that is supposed to limit the acid reflux and acid production, which he thinks might affect my rosacea skin too. We'll see. I also need to take a blood test when I'm really flushed to test for something called tryptase, If I can decipher his letter correctly. The meds he prescribed are Bilastine (Inorial) for 3 months (http://en.wikipedia.org/wiki/Bilastine), Zaditine (http://en.wikipedia.org/wiki/Ketotifen) and Pantoprazole (http://www.medicinenet.com/pantoprazole/article.htm). I have to say that I tend to wake up a lot more pale, and then I turn more red and flushed once I start eating. I watch my diet and do see influences; bread and chocolate and cheese and sugar and chemical stuff makes me bad and certain veggies and meats and not too many carbs makes me less bad. I already told him I take Xyzal, one of the newest antihistamines, with some succes, and he said 'make sure you take double the dose, which I already do (10 mg instead of 5). So I will have to induce a big flush and flare up ("don't over do it, you don't want any damage from it"), for instance by eating a pizza and doing that in the last week of my cycle with the normal progesterone induced flare up, then get the blood test and then start the medication. He said the blood test is less invasive than a bowel tissue biopt, but that they have a ratio of about 70-30% and there is a 30% false negative outcome. So either way, a positive blood test outcome would be a sign that he might be on the right track and I definitely might benefit then from this new medication, and a negative outcome might still be considered a false negative and we need to double check then by taking the medication as well. So, we'll see..... I already suffer from several allergies, so it might be a good connection the doctor made. (All the way at the bottom of this thread I also wrote about the effects of pathogenic parasite infections on auto immune disease and rosacea).

A good friend emailed me in response of me telling her this:
"Oh babes! the illness the German doc thinks you have is called mastocytosis! It wouldnt surprise me if you had it! I need to be tested for it too! I put it off actually, bad me, ive known for almost four years about it and needed to see a haematologist and never went. A friend with similar health problems has it and she really thought i had it too. I've always doubted it. but i just reread the symptoms and god it fits. Let me know how you go??? I'm super curious. you should do the testing BEFORE you start the meds bcoz you wont get an accurate result otherwise. The meds will make your results normal bcoz they reduce the excessive mast cells (from too much histamine) and make them go back to normal. so test first. anyway.. The biggest indicator is whether or not the meds help. Facial flushing is a big symptom! It will be interesting to see if it helps. The treatment he has given you is correct. My friend takes a PPI (stomach acid blocker) and a certain strong antihistamine. It wont work if you dont take them both its actually the joint affect of the two drugs that control the condition, neither of them work singularly, taken together they have a completely different mechanism of action than alone, its fascinating."
 

I found an article explaining how Mastocytosis can cause facial flushing

http://dermatology.about.com/od/facialflushing/a/ffmastocytosis.htm
It explains that mast cells are cells of the immune system that are found around blood vessels in the skin, gastrointestinal tract, respiratory tract, and genitourinary tract. They contain several substances, the most common of which is histamine. They are released in response to contact with certain foreign substances. In the most common form of mastocytosis, there are a greater number of mast cells in the tissues. These mast cells cause a typical skin response called urticaria pigmentosa in which a hive immediately develops after stroking the skin with a blunt object (I don;t have this). People with mastocytosis also experience symptoms throughout the body caused by the release of large amounts of histamine and other chemicals. The flushing occurs suddenly on the face and upper trunk. Many patients cannot identify a trigger that causes the flushing, but some identify exercise, heat, or emotional anxiety as a possible trigger. The red, hot face is often accompanied by palpitations, low blood pressure, dizziness, chest pain, explosive diarrhea, nausea, or fatigue. Medications such as opioid narcotics like morphine and codeine, and aspirin or other non-steroidal anti-inflammatory drugs like ibuprofen or naproxen can also start a flushing attack.

 

 

Is your red face caused by rosacea or an underlying inflammatory disorder?

http://rosadyn.com/rosacea/is-your-red-face-caused-by-rosacea-or-an-underlying-inflammatory-disorder/
While frequent facial flushing and chronic facial redness are hallmark signs of rosacea, there are  five key underlying inflammatory disorders that can cause similar symptoms to rosacea.
The five most common underlying inflammatory disorders that can mimic or exacerbate rosacea are:
  1. Carcinoid Syndrome (was tested and negative for this)
  2. Mastocytosis
  3. Hyperthyroidism (was tested and negative for this)
  4. Lupus (was tested and negative for this although borderline ANA levels of 1:80)
  5. Pheochromocytoma
Mastocytosis is a rare disease characterized by an increase in mast cell number and activity in a variety of tissues.  Mast cells normally produce substances that serve protective, inflammatory, and regulatory functions in the body.  In mastocytosis, these substances are abnormally abundant, causing various skin and systemic symptoms. Many of the substances produced by mast cells are potent dilators that can cause skin flushing.  All the classic symptoms of rosacea such as facial redness, telangiectasia, flushing and papules can be mimicked by certain forms of mastocytosis. Physicians emphasize that it is common for bouts of flushing due to mastocytosis to cause true rosacea in patients not genetically predisposed to the disorder. Symptoms of Mastocytosis: Symptoms include cutaneous flushing, itching, nausea, diarrhea, vomiting, headache, heart racing and breathing difficulties.  Any physician such as your primary care physician or general practitioner can test for this disorder.
You may want to ask your physician about being tested for a underlying condition that may be mimicking rosacea.

 

 

Dr. Nase answered a question about rosacea versus Mastocytosis some time ago as well:

Question: "Do you think we can benefit from drugs used to treat mastocytosis? I gett
terrible hives with my rosacea. Patty"
Dr Nase wrote: "We are now learning that part of the problem with rosacea skin and vessels may be due to altered function and reactivity of mast cells. Mast cells are located in facial skin and are in close proximity to blood vessels. Mast cells are also in great abundance in the nasal passages. When activated, these mast cells open up (degranulation) and release substances that cause the nearby vessels to open up (increased blood flow) and leak (swelling). Mast cells release histamine, cytokines, prostaglandins and inflammatory enzymes that can cause intense bouts of inflammation. It has been speculated that these mast cells are hyperactive
or hypersensitive to stimuli such that they release these inflammatory substances quite often and in great concentration. These mast cells have been shown to release these substances in response to:
1. Heat
2. Sun
3. Friction across facial skin
4. Increased nerve activity
5. Immune response
6. General irritation
7. Spontaneously
The reason why antihistamines sometimes help alleviate the redness, flushing, burning and itching associated with rosacea is because it blocks the actions of mast cell released histamine on blood vessels. But, if you remember from the list above, mast cells release many other potent inflammatory substances.
So the goal should be to stop the mast cell from releasing any of its contents. This can be done by stabilizing the cell membrane of mast cells -- with certain drugs. The active ingredient in nasalcrom (cromolyn sodium) is one such drug -- but it takes some time to stabilize the membrane of mast cells within your nasal cavity (so be patient). So yes, I highly recommend it.
Some other interesting news:
1. Some of the allergy/immunology specialists that I gathered information from said that after treating a handful of patients for allergies (with oral medication that stabilizes mast cell membrane throughout the body), some of their patients who also had rosacea noticed an improvement in their redness and flushing by up to 70-90%. After they stopped the treatment however, the symptoms reappeared.
2. Some physicians are now using topical cromolyn sodium (in a hydrophilic base) to treat severe inflammatory skin conditions. Drs. Moore and Sorensen from LSU Medical Center are reporting good to excellent success with this treatment lotion. It is exciting to speculate that this may be a potential weapon against rosacea in the near future -- I am in contact with these physicians and will relay any more news.
 Hope this helps, Geoffrey"



This blog shows pictures of a young woman who suffers from histamine related symptoms and facial flushing because of it.

Very interesting to compare with our own flushing. My God, her facial flushing and redness looks so much like me and her fingers, mine look exactly like that often. Mine are pretty swollen and red right now actually. And I'm flushed in the face..In her case she has POTS and high histamine levels in the urine,, allergy symptoms like hives and welts, yet her tryptase test was negative and doctors seem at odds (although my derm wanred for false negative tryptase tests and the need for repetition of it).

It's a bit grizzly how similar her symptoms look actually. That could have been my cheeks and hands...






Mother Matriarch

This is a very interesting article about the differentiation between rosacea flushing and Mastocytosis flushing, characterized by either sweating flushes or dry flushes. Link

"At the 2006 Conference of the Mastocytosis Society (TMS) in Portland, Maine, in response to a question about flushing, Dr. Joseph Butterfield (pictured on left) asked whether or not a particular person sweated while flushing. Reference. Then he commented, “Well, flushers that sweat…the flushing tends to be cholinergic nerve discharge, which is not typical of mediator-induced flushing, which is more typical of mast cell disease. There are two different kinds of flushes — the sweaters and the non-sweaters.”

That response got a laugh from the audience, but the distinction is one that has puzzled some of us. Why does it matter whether or not you sweat when you flush? Why is that so important in trying to distinguish between mast cell-related flushing and other causes of flushing?

In this article, I’m going to try to answer those questions, and while we’re at it, I’ll share some of the fun facts I’ve dug up on the subjects of sweating and flushing.

What causes flushing

There are many different substances that can cause flushing, and which ones are at work is related to the specific cause of the flushing. In Table 1, the specific mediators of flushing due to various causes are listed. It should be noted that according to Izikson et al., “With the exception of carcinoids, flushing due to tumors is rare and tends to occur in advanced stages.”

Table 1. The mediators of flushing


Condition Specific mediators
Foods, beverages, alcohol Tyramine (present in ergot, mistletoe, ripe cheese, beer, red wine, and putrefied animal matter), histamine, sulfites, nitrites, alcohol, aldehyde, higher chain alcohols, monosodium glutamate (MSG), capsaicin (which is what makes chili peppers hot), and cigua toxin (fish)
Menopause Estrogen fluctuations
Mastocytosis, anaphylaxis, and mast cell-related disorders Histamine, prostaglandin D2, leukotrienes, tumor necrosis factor α (alpha), vascular endothelial growth factor, interleukins, heparin, and acid hydrolases
Carcinoid syndrome (symptoms and lesions produced by the release of serotonin from carcinoid tumors of the GI tract that have metastasized to the liver) 5-hydroxytryptamine (5-HT; no flushing but diarrhea), substance P, histamine, catecholamines, prostaglandins, kallikrein, kinins, tachykinins, neurotensin, neuropeptide K, vasoactive intestinal polypeptide (VIP), gastrin-related peptide, and motilin
Pheochromocytoma (a usually benign neoplasm in the adrenal gland’s medullary tissue) Catecholamines (epinephrine, norepinephrine, dopamine), vasoactive intestinal polypeptide (VIP), calcitonin-gene-related peptide, and adrenomedullin
Medullary carcinoma of the thyroid Calcitonin, prostaglandins, histamine, substance P, levodopa, ketacalcin, adrenocorticotropic hormone, and corticotropin-releasing hormone
Pancreatic cell carcinoma Vasoactive intestinal polypeptide (VIP), prostaglandin, and gastric inhibitory polypeptide
Renal cell carcinoma Prostaglandins and pituitary down-regulation
Neurologic Substance P and catecholamines

Reference for Table 1.

Here it becomes interesting: 

Flushing vs. flushing and sweating


While there is some overlap between the mediators produced by the various conditions that cause flushing, it’s not hard to see how a physician could pin down the cause of flushing if he or she were able to figure out what specific mediators were involved.

And while there are very benign causes of flushing, such as changes in temperature, emotional state, or exertion, as well as eating spicy food, flushing can also be a symptom of a serious physical condition.

But what about that “cholinergic nerve discharge” that Dr. Butterfield mentioned? What is that, and how can we tell the difference between that and mast cell-mediated flushing?

The sympathetic nervous system’s neurons release acetylcholine, which causes both sweat gland activity and dilation of blood vessels. Reference. So, when you see someone both sweating and “turning red,” you are probably witnessing flushing that is due the cholinergic effects of the sympathetic nervous system.

In contrast, when histamine is released by mast cells in the skin, it has the effect of dilating blood vessels, but the histamine does not have an effect on the sweat glands. Reference.

So when we see flushing without sweating, it’s more likely to be caused by histamine release in the skin, whereas when we see flushing and sweating together, it’s more likely to be caused by the release of acetylcholine by the sympathetic nervous system.

There’s only one caveat to this explanation: When a person is going into shock, they will often begin sweating profusely, and as we know, anaphylaxis can send someone into shock. Reference. So, sweating in the later stages of a mast cell crisis is to be expected — it’s only in the early stages that we expect flushing without sweating."


One of the recurrent topics on the rosacea forum is how a lot of rosaceans there don't seem to sweat much. Me included. I used to not sweat at all for the first years of my rosacea and that was a big change from me as a teenager, when a bicycle ride to school (always late, always rushed) would make me force into the toilets before entering class to wipe the sweaty mustache off my upper lip and from under my eyes. I never had that anymore since developing rosacea, not even when I exercise or spend a lot of time in a hot climate. Recently, I would say the past 4 years, I luckily got back the normal body sweating, like under the arms and on my back when really hot, but still no trace of facial sweating. It's interesting to finally read about the sweat factor in flushing. It could indicate that in my specific type of vascular rosacea symptoms, the biggest trigger is not the sympathetic nervous system, as I always assumed, but histamine release.

 

 

 

There are also some rosacea forum threads about the possibility of underlying Mastocytosis

*When a red face isn't rosacea is everyones doctor checking? link
* It was Histamine Intolerance All along.. Link
* http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?17211-How-to-stop-early-rhinophyma/page2 
* My thoughts on Rosacea and the Immune system... Link
* When a red face isn't rosacea is anyones doctor checking? Link
* Steroid rosacea flaring up- HELP!!! Link




Wikipedia says this about Mastocytosis:

(In red the sections that might apply to my symptoms or the medication I was given). "Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body.
Mastocytosis can occur in a variety of forms:
  • Most cases are cutaneous (confined to the skin only), and there are several forms. The most common cutaneous mastocytosis is urticaria pigmentosa (UP), more common in children, although also seen in adults. Telangiectasia macularis eruptiva perstans (TMEP) is a much rarer form of cutaneous mastocytosis that affects adults. UP and TMEP can evolve into indolent systemic mastocytosis. This should be considered if patients develop any systemic symptoms.
  • Systemic mastocytosis involves the bone marrow in some cases and in some cases other internal organs, usually in addition to involving the skin. Any organ can be involved. Mast cells collect in various tissues and can affect organs where mast cells do not normally inhabit such as the liver, spleen and lymph nodes, and organs which have normal populations but numbers are increased. In the bowel, it may manifest as mastocytic enterocolitis.
There are three classes of systemic mastocytosis
  • Indolent systemic
  • Smoldering systemic
  • Aggressive systemic - 3% of cases
Other types of mast cell disease include:
  • Monoclonal mast cell activation, defined by the World Health Organisation definitions 2010, also has increased mast cells but insufficient to be systemic mastocytosis ( in World Health Organisation Definitions). 
  • Signs and symptoms

    When too many mast cells exist in a person's body and undergo degranulation, the additional chemicals can cause a number of symptoms which can vary over time and can range in intensity from mild to severe. Because mast cells play a role in allergic reactions, the symptoms of mastocytosis often are similar to the symptoms of an allergic reaction. They may include, but are not limited to:
  • Fatigue
  • Skin lesions (urticaria pigmentosa) and itching
  • Abdominal discomfort
  • Nausea and vomiting
  • Diarrhea
  • Food and drug intolerance
  • Olfactive intolerance
  • Infections (bronchitis, rhinitis, and conjunctivitis)
  • Ear/nose/throat inflammation
  • Anaphylaxis (shock from allergic or immune causes)
  • Episodes of very low blood pressure (including shock) and faintness
  • Bone or muscle pain
  • Decreased bone density
  • Headache
  • Ocular discomfort
  • Malabsorption

Pathophysiology

Mast cells are located in connective tissue, including the skin, the linings of the stomach and intestine, and other sites. They play an important role in helping defend these tissues from disease. By releasing chemical "alarms" such as histamine, mast cells attract other key players of the immune defense system to areas of the body where they are needed.
Mast cells seem to have other roles as well. Because they gather together around wounds, mast cells may play a part in wound healing. For example, the typical itching felt around a healing scab may be caused by histamine released by mast cells. Researchers also think mast cells may have a role in the growth of blood vessels (angiogenesis). No one with too few or no mast cells has been found, which indicates to some scientists we may not be able to survive with too few mast cells.
Mast cells express a cell surface receptor, c-kit (CD117), which is the receptor for stem cell factor (scf). In laboratory studies, scf appears to be important for the proliferation of mast cells. Mutations of the c-kit receptor, leading to uncontrolled stimulation of the receptor, is a cause for the disease. Inhibiting the tyrosine kinase receptor with imatinib (see below) may reduce the symptoms of mastocytosis.
Francesca Woodman

Diagnosis

Doctors can diagnose urticaria pigmentosa (cutaneous mastocytosis, see above) by seeing the characteristic lesions that are dark-brown and fixed. A small skin sample (biopsy) may help confirm the diagnosis.
By taking a biopsy from a different organ, such as the bone marrow, the doctor can diagnose systemic mastocytosis. Using special techniques on a bone marrow sample, the doctor looks for an increase in mast cells. Another sign of this disorder is high levels of certain mast-cell chemicals and proteins in a person's blood and sometimes in the urine.

Epidemiology

No one is sure how many people have either type of mastocytosis, but mastocytosis generally has been considered to be an "orphan disease" (orphan diseases affect 200,000 or fewer people in the United States). Mastocytosis, however, often may be misdiagnosed, especially because it typically occurs secondary to another condition, and thus may occur more frequently than assumed.

Treatment

There is currently no cure for mastocytosis, but there are a number of medicines to help treat the symptoms:
  • Antihistamines block receptors targeted by histamine released from mast cells. Both H1 and H2 blockers may be helpful.
  • Leukotriene antagonists block receptors targeted by leukotrienes released from mast cells.
  • Mast cell stabilizers help prevent mast cells from releasing their chemical contents. Cromolyn sodium oral solution (Gastrocrom / Cromoglicate) is the only medicine specifically approved by the U.S. FDA for the treatment of mastocytosis. Ketotifen is available in Canada and Europe, but is only available in the U.S. as eye drops (Zaditor).
  • Proton pump inhibitors help reduce production of gastric acid, which is often increased in patients with mastocytosis. Excess gastric acid can harm the stomach, esophagus, and small intestine.
  • Epinephrine constricts blood vessels and opens airways to maintain adequate circulation and ventilation when excessive mast cell degranulation has caused anaphylaxis.
  • Salbutamol and other beta-2 agonists open airways that can constrict in the presence of histamine.
  • Corticosteroids can be used topically, inhaled, or systemically to reduce inflammation associated with mastocytosis.
  • Antidepressants are an important and often overlooked tool in the treatment of mastocytosis. Depression and other neurological symptoms have been noted in mastocytosis. Some antidepressants, such as doxepin, are themselves potent antihistamines and can help relieve physical as well as cognitive symptoms.
  • Dihydropyridines, calcium channel blockers, are sometimes used to treat high blood pressure. At least one clinical study suggested nifedipine, one of the dihydropyridines, may reduce mast cell degranulation in patients who exhibit urticaria pigmentosa. A 1984 study by Fairly et al. included a patient with symptomatic urticaria pigmentosa who responded to nifedipine at dose of 10 mg po tid. However, nifedipine has not been approved by the FDA for treatment of mastocytosis.




  • Here a mastocytosis patient writes about his symptoms and has a lot of replies from fellow sufferers. He/she writes: "In November, I was diagnosed with Mastocytosis (currently believed to only be cutaneous). It all started with flushing, which last year became extreme discoloration, covered my chest neck and face, and became itchy. I began flushing to Go-Fish, Pitch, slightly stressful conversations, video games, and other equally rediculous and unavoidable situations.

    Turns out that antihistamines didn't cut it for me (Benadryl, Zyrtec, Loratidine, Ranitidine). My Endocrinologist then believed that I had what he called hyper sensitive nerve endings and prescribed a Beta blocker (Atenolol) and then had me slowly remove all antihistamines. I'm not reacting with bright red flushing and itching anymore but the flushing is definitely not gone.
    At the same time I've been having horrible pain in my abdomen which only goes away if I drink 96 ounces of water for at least two days straight and comes back with less. The GI doctor believes I have "hyper sensitive nerves" like from some type of trama to my intestines (aka surgery or infection) and is treating it with a low-dose antidepresent, which I'm not sure I've noticed much good from. I was taking Ranitidine at the same time so who knows what's doing what. All I know is water works the best. We'll adjust meds once the Endocrinologist is done.
    The cutaneous mastocytosis symptoms were mostly just bothersome and the progression is concerning. The abdomenal pain has made me miss a lot of work and it's interrupted my life the most."

    Catpurr replies for instance: "Almaish, I have Masto confined to the GI tract. I totally know about stomach pain and issues. Zantac seems to make my flushing worse. (?) Zyrtec makes me feel weird. I take singulair(preventative),Omeprazole works best. I take Librax @ nite w/ 50mg.Benadryl. Librax is actually an old drug,it relaxes the stomach and usually prescribed for spastic colon(I do not have), and excessive stomach acid. It has helped the most. Sometimes i have really bad days, my Dr. said I can take it whenever I feel sick, but it is very sedating. Hard to do during the day! As far as work?.....I have been a self employed hairstylist for 26 yrs. I am currently not able to work at all. I have someone sort of taking my place. I NEVER have a symptom free day. I flush all the time. The meds dont seem to help much once I start to flush. Once this starts,it (the histamine) irritates my stomach so much that it actually feels like I have crushed glass in my stomach,and with every rise and fall of my breathing,or subtle movement, its like the glass moves too. Slowly,up,up,up, until I heave and heave until I vomit. Its more like just a release, not nausea, bc after, Im able to eat. Usually Popcorn! That seems to be the only thing I want to eat or can tolerate at all. Every evening. Alot of it could be the salt(?). I know that I dont drink enough water. Maybe I will try that. Although we have different kinds of Masto, I feel like we all can learn something that is helpful from each other. Ive learned, you definately have to be your own advocate. I hope you are feeling well today! ((:"

    The author replied: "The antihistamines spread my reaction further and without Benadryl it was very itchy as well. The only thing it did was lighting the color of the flushing. My Endocrinologist said that meant they were working but weren't preventing the trigger of the mast cells.
    I haven't been having trouble digesting and having upset stomach from the antihistamines. Popcorn is way bad for me, I bloat terrible and that just applies more pressure and feels like the tearing sensation is worse. Try getting 96 ounces of water in for 3-4 days in a row. I also took a pro-biotic and fiber (banana is good) every day for two weeks. That was enough time for me to see it work. After that I just have to remember to drink 32 ounces min every day and get 96 every 3 days or more frequent. The pain comes back in varying levels to let me know I've forgotten to drink my water. You may need to adjust that level. I always drink a lot so 96 is not as much of a strain for me as most people. If you struggle physically to drink much water (my sister has to work at 32 oz) then start with 55-64 and do that for 3-4 days.
    My skin reaction is much better on Atenolol (blood pressure lowering meds - aka beta blocker) but it makes me tired all day at a full dose. That helps with the itch and redness. I was playing video games yesterday (that Kinex Dance game) and flushed only toward the end and it stayed on my chest small and light pink. Normally I would have been bright pink before I broke a sweat.


    And: " The absence of skin lesions does not rule out the diagnosis of mastocytosis." from The Mastocytosis Society. I would fall under the last sentence because I have no lesions, ever, and no brownish/reddish spots."

    Note: I have a very bloated stomach at least a part of most days. It can look like I am pregnant and I had it for many many years. The bowel operations where they looked what was going on revealed only a superficial type of colitis, or inflammation of the bowel tissue, called lymfocytaire miscroscopic colitis. It should only cause some diarrhea and bowel upset according to the specialist and needed no medication. The rest was blamed on irritable bowel disease (but that really is the Rest Box for all bowel and intestine related problems it seems). I'm starting to wonder now if all this is related to a histamine/mastocytosis problem perhaps. 

    AKF wrote: "I'm not sure if this will help you or not as I am new to this forum. I am a 41 year old female who has been having a number of severe medical issues over the past few years, currently waiting for muscle biopsy results for myopathy. However I was diagnosed with mastcytosis in October, mainly GI, some systemic. Not only could I not eat many of those foods but suffered chronic severe abdominal distention (requiring large maternity clothes). It was very debilitating. I was put in touch with a GI doctor that specializes in this. An absolute Godsend! I've finally been able to control the symptoms with Allegra 60mg twice a day plus Gastrocrom 400mg/day. Kinda pricey and takes about three months to totally take effect... But so worth it! Have you tried it? It's made my life better!!!"


    So, all in all it seems really worth finding out what my blood test reveals, how my rosacea responds to these medication and what a bowel biopt might reveal perhaps. I have 4 year coloscopies anyway for my colitis so I might be able to combine the two when I'm due for my next coloscopy next year. I do have the underlying digestive symptoms (lymfocitaire colitis and irritable bowel syndrome, had them before the rosacea appeared actually), (extreme) fatigue often, facial flushing obviously, hives now and then and seb derm most of the winter. But what bugs me is that when you look for images on google for mastocytosis, it looks nothing like what I have.. I never get such rashes, as they are depicted there. But I'm sure the dermatologist assumes that the visible symptoms can vary, or he wouldn't have made the connection with my symptoms, surely...?
    I read that prolonged exposure to untreated parasitic infections might in some cases spark off auto immune problems and overstimulate/activate the immune system, including mastocytosis. I thought about the frequent pinworm infections we used to have as kids. It sounds yucky, but having 2 cats and a dog, playing outside all day with friends in the sand and fields and gardens made that a quite common and seemingly innocent annoyance for most (country living) parents at the time. 



    Here are The Rosacea Forum posts about this topic:

    About a mast cell disorder, causing flushing 
    Lilyian wrote: "You could also have a mast cell disorder, as when mast cells release histamines too easily (in a not normal manner), people can flush and have the problems which you describe. The only reason I am mentioning it is that your triggers are the same as triggers for people with mast cell issues. Heat, exercise, weather, etc, will cause these symptoms in people with such mast cells illnesses as mastocytosis. If you did have a mast cell issue going on, it woudl actually be a mild one. But, you might try googling it and seeing what you find. The best source of info is the nonprofit org: tmsforacure.org
    If you did actually have a mast cell problem, it is easily controlled with prescription histamine blockers. Best thing to do is to get checked out my an allergist. People with these illnesses don't really have allergies, but the source of the problem is still mast cells which are what cause allergy problems." 


    Y-gwair: "
    Quote Originally Posted by lilyian View Post
    If you did actually have a mast cell problem, it is easily controlled with prescription histamine blockers. Best thing to do is to get checked out my an allergist. People with these illnesses don't really have allergies, but the source of the problem is still mast cells which are what cause allergy problems.
    This is not true, H1/H2s will only control SOME symptoms caused by release of histamine (like itching), but mast cells actually produce about 60 different vasoactive substances which antihistamines have no effect on. It's true that mast cell activation is not a true allergy, but there are still many allergy doctors that don't understand this and only test the limited parts of the immune system that they know about. Also many don't understand the difference between mastocytosis (which is where your bone marrow produces increased number of genetically altered mast cells) and mast cell activation (where you have a normal number of mast cells which have become abnormally over-reactive).

    The kind of doctor you need to see with these disorders is an immunologist specializing in allergic disease. Ideally they will test tryptase (which is a substance that stimulates the production of extra mast cells in mastocytosis), Diamine Oxidase, which is an enzyme that breaks down histamine, histamine levels in urine/blood. They also look to see if you vitamin D levels are low, as this is also a marker for high circulating histamine. (oh boy, mine are very very low, despite sun tanning my body everyday for an hour at mid day if possible, never understood why levels stayed so low, Scarlet Red). If you are in the US, they will also test for prostaglandin D2 and leukotrines. They should also do a very detailed investigation of your immune system, breakdown of all immunoglobulins, rheumatological markers and many other relevant things.
    After quite a few misdiagnoses, I've finally found the true reason for my flushing, which is deficiency in Diamine oxidase, linked to mast cell activation causing high levels of unknown vasodilatory and neurological irritant substances. If I'd listened to my idiot dermatologist, I'd still be mucking around with clonidine and betablockers, both of which were making my condition worse.
    Doxepin is a tricyclic, which are a group of medications that cause mast cell degranulation, along with many, many other common medications including virtually all painkillers except paracetamol." (See http://forums.phoenixrising.me/index.php?threads/me-cfs-is-a-mast-cell-disorder-hypothesis.18437/page-7 for more information on doxepin, which is a tricyclic antidepressant with anti histaminic properties and also a mast cell inhibitor. See list of medication for mastocytosis symptoms here. Scarlet Red). 

    The link between parasitic infections as a child and the onset of auto immune disease (like mastocytosis)


    This article mentions the connection:  
    Syphacia obvelata (Pinworm) Induces Protective Th2 Immune Responses and Influences Ovalbumin-Induced Allergic Reactions Link 
    Quotes: "More recently, mice infected with pinworms were demonstrated to terminate self-tolerance and to enhance neonatal induction of a Th2-associated autoimmune disease and T-cell memory."

    Link These are some quotes from the link: "Genetic and environmental factors both influence autoimmune disease occurrence, but the identity and mechanism of action of environmental factors are poorly understood. Here we show that pinworm-infected neonatal but not adult mice, injected with an ovarian self peptide of the zona pellucida protein 3 (pZP3) in water and without adjuvant, develop Th2 responses and severe eosinophilic autoimmune ovarian disease. A strong Th2 memory response is recalled when, as adults, the mice are challenged with a regimen that elicits a strong Th1 response in naive adults. The strong Th2 autoimmune response included high levels of IL-4 and IL-5 production by pZP3-specific T cells, and an IgG1-biased autoantibody response. The Th2 response ended promptly upon pinworm eradication, and partially resurfaced upon re-infection. We conclude that the rodent pinworm is an environmental agent that modifies the neonatal response to a self peptide, resulting in termination of the tolerance state and induction of a strong Th2-associated autoimmune disease and T cell memory."

    And:

    "Interestingly, pinworm infection per se does not cause autoimmune disease, and pinworm infection has no obvious effect on adult immune responses to pZP3. This may explain the paucity of literature on the impact of pinworm infection on the autoimmune responses usually carried out in adult animals. In this study, we have shown that pinworm infection modulates or co-stimulates the response of the neonatal mice to a self peptide delivered in its non-immunogenic form with two dramatic effects. It first stimulated an early-onset autoimmune response and autoimmune disease. It then imprints an antigen-specific, long-term autoimmune memory, which predisposes the animals to severe, late-onset autoimmune disease upon subsequent antigen challenge. The unusual manner in which pinworm infection affects tolerance and autoimmune disease pathogenesis has led to a provocative hypothesis. In genetically susceptible individuals autoimmune disease may occur, following early exposure to a self antigen or its mimic in the presence of an environmental modifier. Here, pinworm serves as the modifier, and sufficient antigenic stimulation at this stage could lead to juvenile autoimmune disease. On the other hand, an anamnestic response to a subsequent antigenic challenge would result in adult onset autoimmune disease. As modifiers, nematodes would preferentially elicit a Th2 response and long-term Th2 memory. it is possible that other agents may potentiate a Th1-biased autoimmune response. It is even possible that the modifiers may operate via a maternal-fetal or maternal-neonatal route. This hypothesis is consistent with the epidemiological observation that an early event may impact on the development of human autoimmune diseases.
    Out data have documented the capacity of pathogenic Th2 cells in organ-specific autoimmune disease. Although most pathogenic, autoreactive T cell clones produce cytokines of the Th1 type, and Th1 cytokines (e. g. TNF-α) exert a pathogenic role in autoimmune disease, there is also evidence for involvement of pathogenic autoreactive Th2 cells."

    Wow, I never added these two together...  If these articles and research are right, and I interpreted them correctly, the worm infections in childhood years might have been capable of setting off the auto immune illnesses and problems I have been experiencing since puberty. Its not something I can do much about anymore now, but I did at some point wonder about the link and reading about mastocytosis actually brought me to these studies..There are a couple of people with rosacea who I know and write with who told me they think that pathogenic parasite infections are partly to blame or at least present in people with rosacea symptoms like myself. I always shunned that route, or more precisely, pushed it ahead of me. It has an air of natural holistic healing and detox associations to me, but I am most likely very wrong about that. Some people I know have treatments with antibiotics like metronidazole (Flagyl) and rifaximine to eradicate any of such underlying parasite infections. I have the rifaximine and will try it again very soon, after I start with these anthistamine/anti mystocytosis drugs I have been prescribed now. Good to have some medication on the shelf, so to speak. Here is a site dedicated to parasitic infections versus auto immune disease:
    http://www.badbugs.org/index.html
    http://www.badbugs.org/mystory.htm


     and histamine levels: ore links on Mastocytosis:
    http://www.psychosomaticmedicine.org/content/48/6/437.full.pdf
    http://www.orthomolecular.org/library/jom/1998/articles/1998-v13n04-p236.shtml 
    http://www.aafp.org/afp/1999/0601/p3047.html 
    http://www.preventmiscarriage.com/Discussion-Forum/Questions-for-Dr-Braverman/Mast-Cell-Activation-Disorder-Mastocytosis.aspx 

    Here are more pictures of what a mastocytosis-induced flush looks like:

    http://www.flickr.com/photos/mastocanada/4757893062/in/set-72157623944124093
    http://www.flickr.com/photos/mastocanada/4757256737/in/set-72157623944124093
    http://www.flickr.com/photos/mastocanada/3733877652/in/set-72157623944124093
    http://www.flickr.com/photos/mastocanada/3734924813/in/set-72157623944124093


     

    House in wood in book-art, Su Blackwell.







    UPDATE

    I received the medication, or part of it. I have both the Inorial/bilastine here and the Pantoprazole. The zaditine will arrive on Monday. I already started with the 2 meds I have here now and just added them to the Xyzal. I usually wash the colored coating off medication as I'm afraid the yellow and orange chemical dyes they use for many sets me off (E-numbers etc), but with the Pantoprazole that was impossible, as it is a stomach resistant type of coating (like the NSAID anti inflammatory medication have as well). So in fear of burning my esophagus or something I leave it on. I took it ll before bedtime and now woke up very nauseous. I'm not flushed and my skin is rather cool to the touch but  a bit rosy colored nevertheless. I took some pictures last night, when we went to a small band with a group of friends. The natural eye make up gives me no problem when I put it on and take it off the same day. Once I leave it on for days and nights on end, it gives me acne/p&p's. The ones in the last picture of the make up thread subsided within a few days of not wearing the make up anymore, all by itself. I will keep using these new medications and add the Zaditine from Monday onwards and keep you updated on it. Not feeling like eating and more like puking today :)





     






    Update 7-8-2013



    I have been taking all 3 prescribed medications for the past days and I do wake up pretty pale. I think overall my skin is calmer, but the weather is hot, humid and I help out with a group of mentally handicapped people, as far as I can help. I notice that when I do strenuous stuff, like just yet cleaning for an hour, I turn still mighty flushed and red. Same on Monday when I had to go into town to get the zaditine and I had to walk in a very hot, sunny place for an hour. I notice that I sweat more since using these medications, although that might be a coincidence. It feels more like hot flashes than flushing now, with sweat breaking out everywhere, but a bright burning hot throbbing face on top. Awesome.. The flushes do calm down again once I have the aircon and fan pointed at it and I also made smoothies with ice cream instead of the rosacea friendly rice milk today, so I will stop eating bad foods and give these meds a real proper try. Here are 2 pics on a cool morning (yesterday) and 2 of today, taken just yet after an hour of cleaning (sorryz for the miserable looks). I have to add that yesterday afternoon I did my hair again and painted the hair roots with 3% hydrogen peroxide and baking soda.. I didn't get flushed during nor after but who knows, it might have something to do with the easy flaring today. Not sure how red the pictures turned up, I think I look more red when I look in the mirror but my skin gets swollen so quickly, my eyes and nose too even. In fact, it seems like everything swells up, even lips. Hate it! I have one blood shot eye (my right one) to finish the loveliness of the picture off :(










    Update 8-8-2013

     


    Still taking all meds (needless to say) and skin is more calm than normal. Woke up pale despite it being well over 23 degrees in the bedroom. Been working and cleaning and skin is calm. One eye is blood shot and hurts, a lot of broken blood vessels in it, but unsure if it is related to the new medication (it started 2 days ago though). I notice very dry eyes, but that's not a real surprise given that I take now what, like 3 different antihistamines? They are drying. I have eye gel to keep them lubricated. Happy with a calmer skin. My symptoms are usually redness, flushing and swelling, I rarely get p&p's (except like with the make up or other triggers). I also have been using the eye make up I bought and am using it now on some days, and make sure I get the whole shebang off again at night. No more outbreaks. I guess the make up by itself is well tolerated by my body, but it starts irritating my skin/system (?) after a few days of use without removing it at night. I still use it only when I go somewhere worth putting it all up and not all day all week. 





    9-8-2013

    Buggers, looks like I have conjunctivitis on the right eye.. Its been red now for 5 days and feels very gritty, painful, burning and irritated. The redness is not going down either and I wake up with some crusting of the eye lids (sorry for gory details). It´s Friday so I guess I better sit at the doctor´s for 2 hours (walk in consultations in the afternoon), before the weekend. I looked it up, it looks like conjunctivitis and it can -I think at least- perhaps come from the new medication (dry eyes) or the make up that I left on my eyes for way too long last week. Always something, sigh.

    Just seen my doctor (GP), its indeed conjunctivitis and he saw it starting in the left eye as well. Received a prescription for an eye wash and for antibiotic drops called Rifamycine (for 8 days). I asked if he thought it likely that either the new medication (showed it to him) or the mascara/eye liner could have caused this and he said about the antihistamines that they are very widely used and prescribed and well tolerated and that he didn´t suspect them, but either the make up (bacterial or allergic reaction), or just a coincidence and it happening all by itself. Glad I got some drops now and hope its back in check soon. Here someone wrote that eye make up can actually cause conjunctivitis and that its better to get rid of these two items I have now as they might be contaminated with the bacteria :/ Too bad but we´ll see.




    And I think I will have to keep some of these drops and store them for my Halloween birthday (this is no photoshop lol). Zombie or alcoholic with liver cirrhosis, I'm still torn between these two. The dye in the drops dissolve in about half an hour but they need to be reapplied 3 times a day. I'm also flushed and burning again now, my system doesn't like antibiotics :(

     



    These eye drops give the most disgusting taste in your mouth. Tried chocolate mouse, yoghurt and fruits to get rid of it, but nope, it keeps coming back. Like you have a lot of rusting metal at the back of your tongue. very nasty. It seems that happens often with eye drop use: http://www.ehow.co.uk/how_8644150_cure-bitter-taste-eyedrops.html





    10-8-2013

    The eye redness is already decreasing but it still burns. Unfortunately the antibiotics drop make me flushed a lot. After a night sleep my skin was reasonably calm again today but as soon as I use the eye drops redness and burning comes back in full force. Argggh, hate antibiotics in that respect, still 7 days of use to go :( Just when my skin was so calm.



    12-8-2013

    The antibiotic eye drops now make me flushed for about 2 hours after administering it (3 times a day), but then it settles again to how I was before getting the eye infection. I then look pretty pale. I expect to have a more steady pale skin once I am done with the drops. My eyes look almost fine again so it's tempting to ditch the antibiotic bottle altogether but I will finish the course dutifully. I will keep taking my mastocytosis medication and think they help, but will be able to determine it more precisely after Friday, which is the last day of the drops. I still have no flushing or burning when waking up. 

    Here are some more pictures of mastocytosis patients who flush.
    There is one very interesting blog from a woman who seems to flush quite fiercely and who so far thinks it is part of her mastocytosis. See her blog here, she also describes the sensation of her flushing, which is interesting to read.  She writes for instance:
    "I will swallow my vanity and show you two ghastly looking photos of a recent MCAD flushing episode. I was actually even redder in person…the camera actually toned down the redness somewhat. I did not adjust the images in any way. The pictured episode was triggered by activity and allergens. It lasted about six or seven hours. MCAD (Mast Cell Activation Disease) flushing feels rather like a combination of sunburn and windburn, a sort of stinging sensation. I can feel a flushing episode before it becomes visible and also for a little while after it visibly fades. An episode can last a half hour or so for a very mild one to several days for a major one. During bad episodes, the reddened area is slightly swollen/raised." 


    Here are more pictures of mastocytosis. I have to say, I don't get those rashes nor the red welts. But not every patient has the same symptoms apparently and so far the medications seems to make the flushing and redness a little bit better, not worse.

    In the mean time I help out with a group of mentally disabled/challenged (not sure what the political correct term is nowadays, was kindly told by a friend reader that ´handicapped´ is no longer considered the right word, apologies) people -as much as I can without flushing-, which is a lot of fun. In the evenings I keep working on art historic texts for a university publication so time goes by pretty fast luckily. Here is a video of a Dutch guy who recently won a national television context for the best singer songwriter of the country. Really like him, reminds me a bit of Tom Waits in some ways. His English is not too perfect and he got criticized for it, but won the competition nevertheless.
     (Please scroll down for more mastocytosis-medication trial updates)

    And here is the same song with a band


    Watched a good movie last night, Syostre (Sisters, 2001). A Russian movie about the new Russian Mafia and two sisters having to hide. Pretty good and loved the music in it. Lots of songs from Viktor Tsoi, a cult figure who died in a car accident and from a good group called Agata Kristi. I don't speak Russian but it always sounds quite cool and dark and grim to me, poetic in some way and the music in the film was great. Very 80's and Tsoi sounds almost like a Russian version of Joy Division in some songs. Gotto love that. 
    Here are some links:


















    And I can't upload these 2 songs from Opium for some reason, but here are the links, all featured in the film. 
    Agata Kristi with the film soundtrack and some shots of it







    Helping friend Jojo, game playing including old Dutch 'cake biting', where cake is put on a string and someone is blindfolded, spun around for some time and with the hands on the back they have to find and eat the cake, depending on directions from the group, and egg (or in our case potato) walking.
       



     






    13-8-2013

    I took a picture this morning, when my skin was pale, and will compare it to one taken about 6 months ago. Then I had a flare, admittingly, and despite the new medication I can still flare and get very red, but I like how the base redness seems to be cut back a bit due to all those antihistamines and mast cell stabilizers.



      20-08-2013

    After 8 days of oral antibiotics, my skin wasn´t too bad. I still think I was less flushed and red than normal, but still very capable of flushing and burning. Tonight (already 5 days after discontinuing the antibiotics) I am old fashioned flushed again; very red, burning and back on the cold packs. Was ok´ish today though and I laughed very loudly during dinner from watching a series of clips about Jason Leech from The Apprentice UK (not good for flushing, it triggered it pretty badly for me, plus the heat here and eating crap food today). Feels horrid to be back to the full face burning but lets hope it stays limited to tonight. I received a very nice post (see below) from someone suggesting me to take the patoprazole in the mornings, as it will work better when food is added. Let´s hope this flushing has got nothing to do with this change of schedule. A good friend with the same type and comparable severity of rosacea as me is pregnant, almost 20 weeks by now, and her rosacea is very calm. I am very happy for her (and sincerely happy, I mean with that) but very confused myself again. I had settled on the idea to not have babies for a very long time at least, but now I start doubting it all again. Yet, burning up all night makes me double doubt those thoughts too. Confusing... :(
    For some Jason tv (he is the biggest gentleman in the show, very polite, doesn´t like to lie in business, good sense of humor, Jason for president!) see:


    22-8-2013

    Have been flushing all night and woke up today flushed. Grrrr. I am not sure why the very calm skin changed. Am still on the mastocytosis medication, but can think of other little changes of habit, in temperatures and humidity outside and so on that could in theory be behind it. Will keep using it and hope the flares calm down again. Having a whole day of traveling ahead of me, buggers..

    24-08-2013

    I was a lot paler the first weeks on the masto meds but then last week I got very red, lots of paps en red inflamened patches and flushing. The problem is that I wasnt sure if this resulted from the medication or from something else. I started using a hair mousse last week, to firm your hair as I wanted curls and it has perfume and chemicals in it. It never touched my face, but back in the days I managed to break out in bad acne from nail polish, so I am weary now.
    So I travelled this week and
    was a tomatoe last Thursday and I since stopped the meds. I wasn't just red but had these big inflamened bumps under the skin, people actually looked at my face with a worried look, something I usually don't have unless I'm very redindeed. My usual procedure is to stop anything that I recently started with in such a situation, let the skin calm down and then try the medication again. I always do that double test just to eliminate other potential triggers. NO MORE HAIR PRODUCTS lol and no make up either apart from my char cole black lines. I think it might have been the smoothies I had daily last weeks (I tend to react to too much vitamine C) and the hair product, but I am having such a busy schedule this week socially that I start the meds again next thursday. One week on just my old meds therefore (clonidine, propranolol, mirtazapine and xyzal). The skin is significantly calmer now but like I said, I also stopped using the hair product and the eye make up and the smoothies. We will take my dada on a week long holiday next Thursday.


    Flushed tonight, not sure how red it looks in the pictures but it was more red when I looked in the mirror. These type of flushes/redness shades make my face feel really hot and throbbing and give a lot of burning and heat sensations. I cooled it down with a fan and cold packs, wrapped up in a cloth and it subsided again in an hour or 2. The next morning I slept off the extra redness again.

       
    Mastocytosis can be very severe and is kind of rare, as far as I read. But not everyone suffering from it gets the analphalytic shock from eating a peanut.. Some people have just the red hands, face and flushing and tiredness, but most do have skin rashes on top so I am very hesistant about that diagnosis for myself, as I don't have other than facial skin rashes and neither other than facial skin flushes. I actually think I could have something less bad as mastocytosis and just a sensitivity for histmamine or blood vessels and a nervous system that is too reactive for it. I haven't taken the blood test either yet but will next week.
    I'll add some skin pictures, please don't take offense of my ugly Kermit bath
    robe :)  :) I didn't take pictures of the bad skin unfortunately.. Here it calmed down again. I will in the future keep the camera at hand when flaring badly.

    Update, added 2 flushed pics taken tonight, see a few alinea's upwards.











     

    26-08-2013

    I started taking the mastocytosis medication again last night, when my skin was not good (red, flushed, burning) and had a great cool night and woke up pretty pale today. Back on track with the trial!


    27-08-2013

    Second day on the masto meds again and so far so good; significantly less red and flushed, I'd say a 30% improvement.
    I started to worry if all these antihistamines might perhaps dry out my skin more, as they tend to have a drying effect on saliva and eyes etc, and if that caused the flaring and dry red skin last week, just before I stopped taking the meds temporarily. But I still suspect the hair products most of all. As I said, so far so good again. 







    31-08-2013

    Still less red and flushed than normal. I think the new medication is helping to get a big chunk of the edges off the rosacea. I can now eat probiotic yoghurt every day without much problems. Eating frozen yoghurt too :) I still flush from obvious triggers, like yesterday being at the shore and in the late afternoon sun. But it calms down pretty quickly again as well.


    3-9-2013

    Skin is pretty calm, as long as I avoid the worst triggers. When I stay out of the sun, dn't have it too warm in the house and use a small fan when I feel hot, my skin looks a lot less red than it used to before I started taking the mastocytosis medication. Made some pictures today, after a long day in the car, in the sun, and also some 'on location' (with big hat and sunglasses on). There I was a bit hot and more reddish but it cools down again rather quickly when I get back in the aircon of the car or at home. Obviously natural lightning for the pictures and no make up. 









    Late afternoon, skin is calm again.

    These pics were taken during the day, the ones below at the end of the afternoon. The lighting is different but I was pink all day and more pale when back in the house again. In the 3 pictures with the hat and sunnies, it doesn't look too bad, I can get a lot more red, but for some reason even this pinkness is burning. My skin and face feels hot and uncomfortable. I can feel the flush coming on, when the burning and warmth is crawling up. In the first, say 5 years of having rosacea, I didn't feel anything when I was this shade of pink. But nowadays, perhaps because of 14 years of flushing and over sensitive nerve endings in the face, even this mild redness is burning and hurting and throbbing. But, the good part is that the masto medication seems to keep me a bit less red. I still need to use a fan and avoid triggers but there is some improvement. But its no cure for me. Once I leave the fan, am in a hot environment or eat the wrong foods, have an argument to name some examples, the flushing still comes through.. :/




    6-9-2013

    I emailed my dermatologist a medication update:


    Dear Dr. T.,

    I have used the 3 medications that you prescribed me (Inorial, Zaditine and pantoprazole) for about 5 weeks now and things are going pretty good. I still flush but not as much and my skin looks less red as well. When I get in the sun or in a hot room or eat certain foods or get upset, I can still burn and get red, but I think it has improved about 30%. My skin looks less red and angry.

    I add some pictures, first 2 are taken 2 days ago when skin was calm, 3rd one when I was in a hot car that same day (my skin burned but doesn't look as red as normal and it calmed down again quickly) and the last ones are what my skin looked like in the past when it went bad.

    I hope I can continue to take these 3. I still have to do the blood test... will do that soon and discontinue the medication first for some days. I have almost no side effects, like you predicted, apart from dry eyes. But I have ocular rosacea, so my eyes were already dry and burning. In the winter my rosacea is usually a lot worse so lets hope that this year will be a bit better in winter :)

    Thanks and I will make another appointment after the 3 month trial period.

    best wishes


    I added some close ups of the pictures I already added up here, and while looking for past pictures I found some more that weren't posted yet, I think. I can still flush and still do so daily but for shorter periods of time, maybe I have a few hours per day now that I feel red and hot compared to half of the day in the past. I still use a very small fan on low and at a decent distance when I work or sleep by the way.


    Now



     2011 (sorry for the miserable faces mostly)















    8-9-2013

    I might have pushed my luck a bit the last 2 days. Ate a full bag of cashew nuts last night and woke up reddish, then didn't pay too much attention to food either today and had a long walk and was in a warm kitchen, and feeling pretty hot in the face and flushed again :(  Was red and burning in the morning, then things calmed down again in the afternoon (outer 2 pics are cut up, cheeks looked more red than is visible, but pics were taken in cool light which seems to dim the color a lot, then red tonight, although again it looks a lot worse in the mirror than on the pc screen). Will go back to strict order and discipline again tomorrow, lets hope it calms down again, soon. 









    11th September 2013

     Skin has not been good the past two days. I blame it on making long walks in relatively warm and humid weather, eating too much yoghurt ice cream (but defending that by only eating that for the past days and comparing it with a liquids only kind of detox tour) and yesterday evening I noticed the yellow build up of dead skin, like pictures in the seb derm post. So I gently removed it with cotton pads and bottled water, but the lose flakes act like a scrub nevertheless, making he underlying skin very red and burning and tight feeling. I hate how my cheeks swell up from the flushing, they literally seem filled with air in these pictures. Flushing less and being more pale seems to really deflate and flatten them.. One good friend now calls me his dear chipmunk :'( (although he picked that name from me mentioning it first, but nevertheless. Gosh we loved watching the Chipmunks as kids and with 3 sisters always battled who could 'be' who in the series, everyone wanting to be the cool red one, but my middle sister always ending up being the blue one with the glasses haha). Flushed most of the night and woke up red, but after cooling with a cold pack and a fan, it calmed down by noon and skin looks kind of pale again at the moment (fingers crossed). But despite mastocytosis meds (and still not knowing if I even have mastocytosis... still need to get it tested) I can defo still get very flushed and sore. It made me so crabby and miserable the past days, but in a way it might be good to be reminded of this underlying rosacea beast, as its probably here to stay. And I had also gotten slightly used to the flush less awakenings each morning.
    See the difference in cheek puffiness between these pics! Only one a half week in between..




     




    22nd September 2013

     My skin has been pretty flushed and red the past week. I have no clue why. Have been taking the mastocytosis meds faithfully but I am started to doubt that they are the big improvement I initially thought they were. Either they worked great the first month and now work less good, or they used to work good and I have done something (diet/stress/who knows) to counteract their action. I have been eating healthy but still eat yoghurt. Perhaps I handled the yoghurt well the first months and now have developed a problem with it? I will go back to the old, proven diet of organic meat, vegetables, salad and some fruits and see if my skin clears up. It's mainly waking up with red burning cheeks again, and having them most of the day. Its very depressing and tiring, I feel locked in the house again and my mood is dreadful because of the bad burning. Wishes I was pale still and could finally say: these are the medications you all need to start taking. But so far I am undecided still. Will live über healthy for a week or two and see how my skin reacts. If no chance, I will stop the masto medication for some weeks and see how my skin color and burning respond to that. This is all so tiring and demotivating. 

    30th September 2013

    I stopped taking the 3 mastocytosis medications last week for 4 days, but found that the flushing and redness only became worse. Started all 3 again (on top of my regular medication) and my skin was pretty calm since. Until yesterday. Have been feeling flu like for the past week, with a sore throat and nausea, but it just lingered on a bit and didn't impact my flushing. Then the past 2 days its been pretty bad, with bad stomach pains and bad nausea and not being able to keep any food in. Face is pretty red and flushed on the right cheek all day today.
    Here are some pics of before that flu flare.








    7th October 2013

    My skin is a nightmare at the moment. I am starting to suspect the mastocytosis medication are the culprit. Its very weird, I feel more flushed and my skin feels more burning and tight, but it looks not too red like 70% of the time. The other 30% I'm really flushed, mainly in mornings and evenings. I think the stuff might make my skin too dry perhaps, hence the tight burning feeling.. I don't know. Stopped taking it a few days and skin was bad, started taking it again and skin was good for 2 days and then back to very bad again. All I know is that before I started taking this stuff, I think I felt less hot and flushed and tight in my face. I had many days where I felt flushed and hot and looked in the mirror and looked only slight pink or even palish. Very werid indeed. Because of that, I have kept using the masto meds, because looking not too red is good, right? But it starts to feel very odd. My skin is not predictable like it used to be. I now flush at other times than before,  I am even getting ear flushings the past week and its terrible, although not as bad as full face flushing, but when my ears starts glowing I know its only a matter of time before the rest starts burning too. I skin feels worse than it looks and sometimes looks worse than during a normal flush, I think.. Not sure. I should have made one picture every day for the past 3 months, one in the morning at a fixed time and one in the early evening. That seems the only way to sort of objectively evaluate the effects of it. I'll stop the inorial, pantoprazole and zaditine for a week or two now, and see how that goes. 
    I'm afraid that all those antihistamines might dry my already dry skin out even more. Or that it creates more histamine receptors somehow in my body/skin and makes me more prone to flushing when stopping the meds even? 
    Had a busy week with social things to do and it has been tough. I'm stressed out about all sorts of work I'm running behind with, got wrapped up in some forum about a tv program called The Mole and spent too much time debating a mole suspect (yeah, for real...) and analyzing shows. Was with friends all day today and flushed all day. The good part of it all, is that they say I look so much less red and swollen now than say 8 years ago. But I feel like I am very badly flushed and I didn't have that before taking this stuff, only when really flushed. Trying to ignore it and bringing my cold packs with me to my sisters place and my friends places. Managed to have a good time with them anyway and with their nice kids, who really don't give a rats about the color of your face seemingly. I also ate very healthy the past months, and especially the past week. Had a massive bout of flu the week before and didn't eat much at all then, and the past week only vegetables and some organic meat and fruits in the evening. And guess what, I think my skin looks worse. Bought some fries and Bounty icec ream tonight, heck I was red already and I feel unflushed and more pale now, 2 hours after. This makes no sense..
    Will go back to the old meds; clonidine (0,75 3 times a day), propranolol (40 mg a day), Xyzal (10 mg a day and Mirtazapine; I am feeling so good on 30 mg, upbeat, cheerful, but I am more red and flushed for sure. Tried it several times and always have the same effect. At 15 mg my skin is best but that dose does absolutely nothing for my mood. At 22,5 I feel pretty ok, nothing too great but decent, but seemingly more red than at 15 mg.
    Gosh we can't win, can we? 

    (Rant over :)  )
    Beautiful work by K.Ziehl




    15th October 2013


    I stopped the mastocytosis medication around 6 days ago and my skin seems to get a bit more calm I think.. Less tightness and burning sensations, although the past week was a bad one, skin wise, nevertheless. Pictures are from the past week (3x, red, hot), and this morning (the light picture, calmed down+ obviously not (never) wearing make up and with natural light). As most people with rosacea might know, the way it feels and looks in real life (hence, very red and burned up) isn´t always reflected entirely in the pictures, but I was on fire here. Had to travel a lot in public transport the past weeks as I lost my drivers license and the indoor heat made my rosacea so much worse :(
    Spent a lot of time behind a fan with cold packs. Today skin is calmer; the last pic was early morning and by now the pinkness/redness has been crawling back up, but its not as red as the past week, thank god.
    I think the masto meds might have worked well and then made things a bit worse, to be honest. I blame that on the dryness they caused (don't forget, I already took a double dose of Xyzal antihistamine and then these 3 on top, ánd the remeron has anti histamine effects as well). Have been using jojoba oil, diluted with water, on my face, with exception of the inner cheeks (too sensitive for anything, I spare them). I think it has helped a bit as well. My skin looks and feels less painfully dry at least since stopping the masto meds. Am a bit disappointed however, that the high expectations and good initial results didn´t seem to continue. It´s so difficult to be certain the worsening was from those medication,as it went well in the beginning and because there are soooo many variables and so many potential triggers that could have caused this, instead of those medication. But I stopped and restarted now a couple of times and I keep having the nagging intuition feeling that I am doing worse the past months when I take the meds... So will stay away from them for a few more weeks and then re evaluate.

     


    27th October 2013

    Ihave been off the mastocytosis medicaton for the past weeks and my skin is a lot more calm now than the last week or two on the meds. Very little flushing and I can make long walks in the evenings again without flaring too much, so I think the mastomeds experiment failed for me personally. I do think they can help other rosacea patients in theory. The antiistamine Xyzal helps me a lot and I have been taking it for the past 7 years, but I suspects that adding too many different antihistamines on top of each other and to the mix, might affect our skin in a negative way, making it more dry and therefore prone to flushing. So I stick to my current meds:

    *clonidine: 0,075 mg (75 mcg), taken 3 times a day, every 8 hours
    *propranolol 40 mg, once a day
    *Xyzal, 10 mg once a day
    *mirtazapine, 22,5 mg once a day (at night)

    I wished I could up the mirtazapine to 30 or even upwards, as I have been feeling low and struggled with some depression again lately and it takes so much energy to keep going and stay positive and active some times, but as soon as I up the mirtazapine to 30 I get worse flushing again. So I stick to 22,5 mg and try to exercise myself to happiness :)






    December 25th 2013
    Update: finally got tested for Tryptase and was very low, well within the normal range. My levels were 1,8 μg/l, while the normal range goes up to 11,4 μg/l and mastocytosis patients tend to have 67 μg/l according to PubMed. I also started using zaditen and inorial (1 instead of 2 pills this time per day) again the past week and feel it helps me to stay more pale. I think the pantoprazole made my rosacea worse, not these 2 meds I continued using again.

    I was asked: `Have you ever had testing for allergy, mastocytosis, histamine intolerance, and mast cell activation syndrome?` Apart from being tested (negative) on tryptase, I have been tested on IgG and IgE allergy levels in a blood test, also negative. Based on that there so far seems no need for extra testing but I do have elevated ANA levels (not related to allergy or histamine though). See derm in 2 weeks so will ask how its possible to have a negative tryptase test result but still see improvement in flushing redness and rosacea on these antihistamines. The rosacea is still there by the way, just looking a lot less bad and I don't have the constant flushing issue now. 











7 comments:

  1. very good blog dealing with rosacea. thanks for the share.

    AP
    Author

    ReplyDelete
  2. re: pantoprazole
    "I took it ll before bedtime and now woke up very nauseous. "

    I've been on this since 2000. Discovered I have to take 20-60 minutes before breakfast. If I delayed, say 2 hours, OUCH! stomach ache. Perhaps this is your cause of nausea; you could shift to am 20 min before breakfast. Pharmacist said it turns off the proton pumps in the presence of food, esp, fat and protein. If these are not in stomach, proton pumps not as shut off; by am when food hits, blood levels of drug would be lower. I developed rosacea 2003, kind of wondered if pantoloc was a cause due to not entirely digested food with lack of acid and pepsin? I just went on zyrtec (also 1000 extra iu. of d and BioK probiotic) and surprisingly my face is less red. Not sure why.
    Great site.

    ReplyDelete
  3. Oh thank you for that great post. I indeed take the pantoprazole before bedtime, which could be entirely the wrong time, listening to what you said. I will start taking it in the morning from now on, half an hour before breakfast. It's just so easy to whack the whole cocktail of pills in after teeth brushing :)

    Sorry to read that you developed more redness from it.. So far mine is less, but I see my derm in a few months to evaluate and will defo discuss this concern and your experience with him. Zyrtec is just a regular antihistamine though, and I already take the 2 newest and strongest on the market right now. I will keep a close eye on it and also on food digestion, I haven't really noticed anything different apart from the facial flushing since starting these 3 new meds, but do have a lot less acid reflux. Starting to wonder now whether or not pantoprazole has the capability of letting the food pass undigested, or at least less well digested? Thought the bowels had to still work on it too, but will try to find out more about this. Thanks a lot! I hope you will be able to reduce the facial redness even more. Vitamin D might also help you control it to some degree?

    Best wishes SN

    ReplyDelete
  4. Many thanks for writing this blog which has helped me a lot in my dealing with the severe Rosacea. Your blog is very informative. You are beautiful and I really love the pictures and paintings you posted in this blog.

    Best wishes,
    Grace

    ReplyDelete
  5. Thank you so much Grace, it means a lot to me to read your comment

    ReplyDelete
  6. Kashif Mugal wrote:

    Plaquenil and mepacrine are antimalarial drugs that are widely used and have been prescribed the last decades by immunologists.

    ReplyDelete

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