tag:blogger.com,1999:blog-6015332149890513796.post3218348376896797893..comments2024-03-23T17:03:55.153-07:00Comments on Scarlet Letters, dealing with vascular rosacea, face flushing, burning and the rest: Visiting Dr. Chu in LondonScarlet Nathttp://www.blogger.com/profile/07109388039163423418noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-6015332149890513796.post-67901320532988096872014-04-28T18:26:59.082-07:002014-04-28T18:26:59.082-07:00That is wonderful to hear, that your GP at least l...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. <br /><br />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 :(<br />So no offices for me anymore..<br /><br />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? <br /><br />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 <br /><br />Scarlet Nathttps://www.blogger.com/profile/07109388039163423418noreply@blogger.comtag:blogger.com,1999:blog-6015332149890513796.post-13079041306723308932014-04-28T07:15:02.379-07:002014-04-28T07:15:02.379-07:00Thank you so much for your response and for being ...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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />Take care-PippaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6015332149890513796.post-40885274960150144512014-04-27T07:54:07.962-07:002014-04-27T07:54:07.962-07:00Thank you for commenting here Pippa and sharing so...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 Scarlet Nathttps://www.blogger.com/profile/07109388039163423418noreply@blogger.comtag:blogger.com,1999:blog-6015332149890513796.post-33336023154866917742014-04-27T07:00:41.705-07:002014-04-27T07:00:41.705-07:00I have been reading up on your journey as I am jus...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,<br /><br />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!<br />Pippa Lane<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6015332149890513796.post-53726630737994951212013-04-28T08:53:45.383-07:002013-04-28T08:53:45.383-07:00Thanks for your comment, yes I know.. I was told t...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).<br /><br />Thanks for your advice though, it's spot on.<br /><br />Best wishes ScarletNat Scarlet Nathttps://www.blogger.com/profile/07109388039163423418noreply@blogger.comtag:blogger.com,1999:blog-6015332149890513796.post-89527978524794826272013-04-24T23:32:56.549-07:002013-04-24T23:32:56.549-07:00indomethacin might be a bad idea with your colitis...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 ibsAnonymousnoreply@blogger.com