24 March, 2013

Visiting Dr. Chu in London



Last week I went to London to see Prof. Tony Chu at Hammersmith Hospital. I saw him in 2005 and 2006 and then every 2 years approximately. Initially I came in terribly flushed, constantly, and was at my wits end. I had already booked a flight to the US to see dr. Soldo for more IPL treatments, in the hope of some relief. But I wasn't feeling very comfortable about that, given the first IPL in the UK that made me so bad. A friend invited me over to the UK to see his dermatologist (Chu), to find out if there were other ways to control my rosacea, before jetting off that far for more IPL. He prescribed me a cocktail of meds, and it helped me so much. Clonidine, propranolol, remeron and Xyzal later. I still use these meds today, but I like to keep seeing him now and again, for updates and to stay in the system so to speak. I also still look out for better meds or treatment options, as my rosacea is still very present, although easier to live with now.

I had an appointment on the 14th of March and flew into London in the morning. I often find that when I skip meals, it is easier for me to avoid flushing, so I ate nothing and got a priority boarding pass. With Ryanair that only costs an extra 5 euro, but it enables you to avoid the long queues and pushing people. It's always so hot in those airports so I usually hang around the entrance in the fresh air (stay clear of the
smokers who gather there together) with a book as long as possible, then go through security and avoid the long waiting list and find a spot in the back of the plane (unspecified preference), and point all the small air fans in the panels above my chair and the other 2 chairs towards my chair :)  After landing in London I bought a ticket for the train and drove to Liverpool Street station. Still not flushed, although a bit pink and had a puffy face too from a few bad days prior. (How I hate the
puffiness of rosacea). I asked for some ice cubes at a fast food counter there. I usually say that I have a toothache or something along those lines (people instantly make the connection with the ice cubes then and seem more sympathetic) and even though they generally don't want to charge me anything for it, I give some proper tip to the coworker in question. I think mainly because I want to pay off the feeling of being needy and weird, somehow. In the tube to East Acton it was hot and sucking on some ice cubes helped to stay cool.


I am not a massive London lover for some reason (with exception of area's like Camden and Holland Park perhaps, although those were one time things), but I do love the odd characters, the fashion sense and the humor of the people there. In the subway, on one bench sat a woman in black, with gothic eye make up style, with a big hand mirror who was retouching her make up for the entire duration of the trip, and without any scruples or sense of discomfort. Next to her sat a girl with purple hair and close to her a girl with wavy long hair and a beanie hat on and only when she turned her head I could see that half of it was bright blonde and the other half was darker and golden colored. Perhaps this is omnipresent in the UK, but certainly not on the mainland. Loved the punk like outfits. Later a perfectly groomed young British gentleman with a bowler sat down at her place and looked so impeccable and smart. I love hats and wished everyone still wore them outdoor.




From East Acton station it's only a short walk to Hammersmith hospital. I stayed the night in the housing accommodation next to it. It's meant for hospital staff and outdoor patients and costs around 95 pounds per night. You get a small apartment like room for this, with a kitchenette, fridge, shower and tele. I like its proximity to the hospital and it is only a few subway stops from Notting Hill.
I was supposed to see Dr Chu at 5.30 pm, and checked beforehand with the secretary if he was on track with his appointments. Experience is that he can run late, especially at the end of the day, but she said he was surprisingly good on time, so to not come late myself. However, when I arrived at 5.25 and rechecked, something had come up for him to run late nevertheless :)  It is quite warm in his hospital wing and stuffed with indoor plants, which all make me flush. I took an extra Xyzal tablet but had managed to not be flushed all day except for rosy and a bit warm in my face (but not hot and burning and feeling stressed out and rushed accordingly) so I didn't want the last bit of waiting ruining all that. There is an outdoor terrace next to the waiting area and like usually I waited out there, with a magazine and all the while keeping an eye on the waiting room. Odd, but well, I try to behave like it's the most natural thing in the world.





When I saw Dr Chu he was very friendly and said that it had been a while, 2010 he believed? I really like his accent and way of speaking, it is a very upper class type of English, very pretty sounding. We chatted for a while about how things had gone the past years with me, in terms of rosacea symptoms and medications. With regards to pregnancies and rosacea he said that most females do fine during pregnancy, although some do get worse (usually not in the aftermath), but it can also in fact go temporarily better. He sees the same with eczema patients and this might be linked to the lowered immune system during those 9 months. However, he doesn't have many young female rosacea patients, mostly women who are a bit older and recently he noticed a big surge in younger guys with flushing and redness or paps in his practice. Often prescribing clonidine eliminated the biggest part of the flushing problem afterwards.

I told him that I am not doing so good in winter and quite a lot better in summer, and he referred to another patient of his, who became a friend of me over times as we have a very similar case of rosacea and are both around the same age. He mentioned how he was always stunned that she also improves so much when she goes on holidays. He found that very typical, as usually he sees patients getting worse in the sun or when it's warm in summer. He recently had a new patient who developed rosacea out of nowhere after traveling through Vietnam in the hot season there for 2 months, and the heat triggered her rosacea quite severely apparently. I remember being in Turkey during a heat wave (50 degrees/122 Fahrenheit all day and even the Turks themselves were huffing and puffing and I came back so much worse rosacea wise). But that other patient and I seem to be doing better in (not outrageously hot) summers nowadays. Maybe the confusion also came from the word sun, as I'm also getting worse in the sun, but I explained that sunbathing the rest of my body (and having my face in the shade) seems to lower the redness and flushing to some degree for me. I told him about my low vitamin D levels and how I think that using my vitamin D lamp or sunbathing might raise those levels a bit and in turn lowers inflammation, possibly, and he was interested in that and said he knew of the connection. Why didn't I take vit. D supplements? I told that I think they make me flush much more and that I am doing a lot better when I use the lamp, and then better than that again when I sunbathe. He suggested that might come from the full spectrum of radiation that the sun provides, compared to the narrow UV radiation from the lamp. But I should be diligent when it came to protecting my face from the sun he reaffirmed. He had suggested some sort of light therapy for her, purely based on the fact that she improves so much on holidays and assuming for now this might come from the sunlight exposure on her body. I have read from many patients that they miraculously get some break from the flushing and redness when on holiday and there have been many theories on this. Perhaps relaxation is another factor in play, or the more stable and higher temperatures.
We also discussed my medication use and I told him that every time I try to stop the remeron, it goes well for about 2 weeks and then it is a big inferno again. He realized this, as she has the same problem, as well as some other severe flushers who use it. It's great of course that it works, but I don't like the weight gain issues it brings. I asked if there are medications he can prescribe perhaps that will make me go back to my old weight but he said there aren't, and the ones that exist give pretty bad side effects (like malnourishment and bowel issues) or are totally ineffective. So I will have to keep exercising, dieting and putting up with increased appetite and changed metabolism I fear. In the end however the reduced flushing and good mood weigh up (lol) to the down sides. Still... At 15 mg remeron works best for my flushing, but at this dose it does very little for the occasional feelings of doom and gloom and general pessimism. Unlike 30 mg and upwards (above 30 mg is fairly useless for rosacea however). I felt really good at 30 mg, but the flushing is more prominent then unfortunately.. I also told him how the antimalarials don't work for me; that mepacrine makes me flush bad, all 3 times that I tried it now (which surprised him a little bit as she is doing really well on it, among others, and we generally have comparable rosacea), and that the plaquenil did seem to make me more pale but that the eye burning is unbearable for me. He said Yes yes, that is unfortunately a more common problem with virtually all the antimalarials (except mepacrine as far as I know), that they are very harsh on the eyes.

I asked him if I could try a local antibiotic called Rifaximin. I read that it can lower inflammation and helped some p&p versions of rosacea and Mistica emailed me about this as well. He said yes and found it interesting, as he already uses it sometimes for patients with acne, and it significantly reduced the acne and overall inflammation for them. But he hadn't thought about trying it for the vascular rosacea patients, but was interested if it would do anything. In theory that seemed a good option. And because I have (mild) colitis, it is even more interesting for me, as it might also help with that. I'm usually doing very bad while on antibiotics, like all the tetracycline ones and azithromicin also was a nightmare, but the Rifaximin is supposed to only work locally in the bowel and not enter the blood stream in the same intensity as regular antibiotics do, so fingers crossed. I can try it for a month. I also asked about another anti-inflammatory, in the category of the antimalarials. I used diclofenac for a long time. He suggested I try another NSAID, as it works a bit differently than diclofenac, called Indometacin.It helps reduce inflammation and I can try it for a month and see how that goes. Hopefully it is less strong on the stomach and bowel for me.

So, two more new things to try.


After the consultation I went to the hospital pharmacy, who were about to close, and they did have the rifaximin but the Indometacin had almost reached the expire date and I preferred a months supply that would last me a bit longer. The girl helping me suggested that I'd go to the Charing Cross Hospital, a few tube stops down the road the next day. I spent the early evening in Notting Hill, eating somewhere and walking around in the area.The next morning the short walk and subway ride to the Charing Cross Hospital turned out to take me 2 hours and then I had to wait a full hour for my medication. In itself not a big problem but I still had to travel back to Stansted airport and fly back home, but in the end I just made it. And I got my meds:

-Rifaximin (Rifampicin) 150 mg capsules, one capsule taken twice daily, 30-60 minutes before food.
-Indometacin, 25 mg capsules, one capsule taken three times a day, with or just after food.

Because the Rifaximin capsules have fluorescent colors and can stain the urine according to the pharmacist and the leaflet, I will buy some more neutral capsules first to put the powder in. After
flushing from the mepacrine (which has bright yellow dye) I rather try this med on the best terms and conditions, given I only have it for one month. If it makes me flush when I take it now in the old capsule, I am not sure if the flushing comes from the capsule or from the drug itself.

Skin

 
Really wanted to see this expo ..











6 comments:

  1. indomethacin might be a bad idea with your colitis, even diclofenac gel is not recommended (both cause bleeding) if you have ibd, maybe ok for ibs

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  2. Thanks for your comment, yes I know.. I was told to not use any NSAID's by my internist following the colitis diagnosis, but I never noticed much worsening in that respect, while on the diclofenac. Mine is quite mild. It's perhaps a bit like with the beta blocker and the clonidine; when I got diagnoses with Raynaud's, the doctor said that I couldn't take those drugs anymore either, as they will worsen Raynauds. But it's a choice between two evils often, and for me personally the cold red hands are peanuts compared to the red burning cheeks. I prefer to keep the rosacea in check with whatever it takes often. I didn't use the diclofenac for the past 3 years however and haven't started the indomethacin yet (but will try it out, if only to see if the rosacea even responds to it).

    Thanks for your advice though, it's spot on.

    Best wishes ScarletNat

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  3. I have been reading up on your journey as I am just starting mine and I had no idea that others suffered with this horrific acid like burning and redness just from simple every day things like going to the store, or daring to eat breakfast! I sleep with a fan on my face and a cold insert in my pillow and wonder each day how bad it is going to be. But I have learned so much from your blog and posts on the forum that at least I am armed with what to try and suggest to my doctors who don't seem to know where to start,

    Do you know why eating-I mean eating anything-can cause things to stir up? My face looks pretty decent in the morning and then as soon as I give into hunger it starts reacting and I eat pretty innocuous things. I noticed in your blogs posts you mentioned this happening to you too. Okay, back to reading. Thank you so much for taking the time to create this place for us. You are awesome!
    Pippa Lane

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  4. Thank you for commenting here Pippa and sharing something about your rosacea problems. I am like you. I can look sort of pale in the morning after waking up (also sleep with a small fan on always), and then as soon as I eat anything, wham. It goes back to red and flushed. It's so bad now that when I have meetings of any sort in the day, I just don't eat at all, till after I get back home again. I will get a bit more red then as time passes but nowhere as bad as once I get something to eat. I thought about it too, what could be the cause.. Perhaps because our digestive system only starts working in higher geer when it has something in the stumach to digvest? By starting the digestion, it produces some heat. That's also why some people get a lot more flushed when they eat a large meal at once. Creates a lot of heat, suposedly. Also, one wonders, it might be from what you eat in the morning? I notice for instance that when I only eat some pears, I don't get too bad. When I eat gluten free pancakes (carbs I guess), bingo. I hope you can find some relief for your symptoms. I know how draining and seemingly never ending it all might seem. If you have a cooperative doctor, and have a lot of facial flushing (and you needing a fan indicates that I think), then I would actually try out medication. I posted in the medication section about them, and also some warnings as I got some slack for advicing on prescription medication, but I think I do that for a good reason. If you have any questions, feel free to ask them here in the comment section or by mail at scarletnat@gmail.com Hope you get some improvement very soon, best wishes http://scarletnat.blogspot.com/2012/09/medication-for-facial-flushing-in.html

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  5. Thank you so much for your response and for being so open with your experience. I wouldn't have known where to start without it really. My derm is not as helpful as my GP ironically who has prescribed me propanolol and has given me some samples of clonidine. The propanol is the extended release which I am nervous about because I feel like I have less control over it in some ways. I am picking it up today. I tried the clonidine and slept almost 12 hours so I might break it in two and see how that goes but she only gave me five.

    The social side effects are so debilitating. I am studying to be a teacher and I wonder how I am even going to do this? Maybe I should find a job working in a dark, cool supply room somewhere. I had heard of rosacea before but only associated it with redness but not the agonizing burning that is so inhumane. It feels like a chemical burn and can appear at any time. The worst is when someone is watching it as it comes on.

    I am also noticing that my mouth is more sensitive to food now. I am getting more canker sores and my gums hurt. I wonder if that is related or not. I just miss being able to eat and not wonder how bad my face is going to look afterwards.

    I haven't caught up on your blog so I'll have to see where you are now. I am interested to see if you feel more in control of your life now. That is the suckiest thing about it.

    Take care-Pippa

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  6. That is wonderful to hear, that your GP at least lets you try propranolol and clonidine. I added some sort of words of defense in the current medication blog post, after some people wrote me that they disagree with me suggesting prescription medication for something as non life threatening as rosacea. I always think: Rosacea is not life threatening but it can destroy lives. I'm glad you are under doctor's guidance and are allowed to at least try these anti flushing medications. I take 0,75 mcg clonidine 3 times a day, as I find it wearing off and giving some mild rebound after the 8 hour mark. I take 40 mg of propranolol once a day, but in the past have taken 40 mg every 8 hours for along time, which seemed to really help me. I hope you see some effects and please feel free to share that here. I found the mild side effects, like tiredness, wore off after some time, and my doctor says that for almost all of his patients the drop in blood pressure is temporary, as your body compensates a bit. I am in the low normal range still for my blood pressure, despite never having had high bp and now being on 2 bp lowering meds. We use them at lower doses than those who take them for heart realted problems or hypertension.

    Yeh I also find my rosacea to be very debilitating. I am behind a small fan most of the time, day and night. It was like a blink in time, a feeling, but when I first developed rosacea (immediately went from normal skin to flushing quite a lot), I was studying law at uni. I was doing really well but had such a hard time for 6 months debating in class, joining all sorts of uni related trips etc, that I just felt there was no way I would be able to stand in the dock and be a lawyer with this skin condition. It's very odd that I almost knew for some reason that this was going to be a long term problem, instead of a transient thing. So I switched studies and studied art history instead, and am very lucky in a way now that I can work and write and do my research for a big part from home. Not ideal but I had a nightmare time in an office for one year back in 2007 and my rosacea went nuts, as well as my colleagues who all complained of cold necks from me having a window open in winter :(
    So no offices for me anymore..

    Don't want to demoralize you though, maybe you can find a way to control your flushing and burning, either with medication or laser/IPL treatments (but please be careful and do test spots first then). I did let go of a teaching offer at uni because my flushing is too bad. I took over one college class for 6 months while still studying and had a small fan on my desk while teaching and I felt an absolute clown :( Didn't show it though, it seemed to go well and got good feed back afterwards, but it took a lot of the fun out of it and made me feel very self conscious. Maybe if you teach younger kids, a small fan wouldn't even be a problem though (Mine were 20-30 years of age), or you might not need one at all and just keep the temperature in your class room low?

    It's tough having rosacea and having it impact your every day life the way it does often, but hopefully you can improve your symptoms now :) Best wishes

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