Steroid withdrawal question
Joined: 07 Jan 2008
| Posted: Tue Feb 12, 2008 5:47 pm Post subject: Steroid withdrawal question | |
| Do symptoms of steroid withdrawal wax and wain (sp?)- or whatever the expression is?
I felt like I was finally on the right track. I was starting to see some improvement in redness and the flaking was getting a little better, too. Then last night I flared up again. I could feel it coming on before dinner and by the time I went to bed I was really red. When I woke up this morning I was very flaky. Is this normal for steroid withdrawal or do I possibly have something else going on? My biopsies came back as "allergic atopic dermatitis" or spongiotic dermatitis. I'm wondering if my poor food choices over the weekend (after two pretty good weeks of a clean diet) had any impact. My derm has pretty much said she's stumped and thinks I should try a gluten free diet for a while to see if that helps. I'm going gluten free (mostly yeast free, too) as well as significantly reducing refined sugar. I had some serum testing done at the allergists yesterday so we'll see if that yields any results (probably not!). Grrr....so frustrating!!!! It took EVERYTHING in me not to pull out the steroid cream! I know, I should throw it away, but I need it for the eczema on my hand. Any thoughts?! Thanks! |
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Joined: 27 Apr 2007
| Posted: Tue Feb 12, 2008 6:31 pm Post subject: | |
| The answer to your question is YES. There have been soooo many times I thought I was on the mend and then I would go right back to where I was. This little mind @!*!........things do get better.
One of the problems of spending time on the internet is that you start to think that there may be another cause to your situation. I am not saying that there isn't however based on your steroid use, it is more likely that all your symptoms are as a result of steroids and not anything else. I have been down this road for over two years and tried most of the diet eliminations and thought it was every kind of skin condition imaginable. Bottom line, steroid overuse can manifest itself in so many ways and we all have different symptoms as well as some very similar...red face, flakes, itching. Forget the diets and the creams....you probably won't be able to but just so you don't feel frustrated when nothing changes...keep your expectations low. Hang in there....keep it simple. |
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Joined: 07 Jan 2008
| Posted: Tue Feb 12, 2008 6:59 pm Post subject: | |||
Thanks so much, Monte! It is so unbelievably frustrating, but good to know that others have been there and can relate! I am trying really hard to just relax and deal with it. It does make sense to me that it's steroid related b/c all of the other allergic issues I have are kept under control with all of the anithistamines I'm on, yet my face doesn't get any better. Like you said, I spend a lot of time trying to figure out if it's related to X or Y, but need to just relax and give it time. I guess there's no harm in trying to eat a clean, healthy diet, so I'm going to stick with that, but not get too caught up in it. I had some serum testing done yesterday to check my tolerance for gluten and yeast as well as some other things, so we'll see how that comes back. In the meantime I'll just stick to my gentle cleansers and moisturizers and hope it gets better again. I'm glad I found this forum, it keeps me from googling other possible diseases/conditions/causes!!! I know everyone is different, but at what piont did you turn a corner and notice forward progress without falling back? Also, how long were you on topical steroids and did you have p&p's, too, or just redness? I just have redness. Thanks again! ~J |
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Joined: 27 Apr 2007
| Posted: Wed Feb 13, 2008 4:54 am Post subject: | |
| A couple of things I learned about steroid induced rosacea recovery:
1) it depends on the strength, amount used, and lenght of time used AND if it was topical or oral. 2) your skin type - are you sensitive to topicals etc... For me, I have sensitive skin and I used Desonide for about 4 months and used it several times a day...maybe six times per day...the doc never told me otherwise. Also, I took 60mg of Prednisone for one week....twice. This being said, I feel that if I had left things alone my recovery wouldn't have lasted this long... I just past two year mark. However, I tried all sorts of crap and many of the things I tried created flares....some worse then others. I am on the tail end of this and am doing better then ever. There was never a point where I saw my condition take a turn for the better...It just gradually improved with some flares thrown in for good measure. So don't expect to wake up one morning and look in the mirror and see a big improvement....from everyone I have talked to, the consensus is that this thing slowly resolves itself over a period of many months and possibly years....it all depends on the factors l listed above. Hope you recover sooner then later  |
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Joined: 07 Jan 2008
| Posted: Wed Feb 13, 2008 3:25 pm Post subject: | |
| Thanks again, Monte!
It's interesting that you had this happen after several months use, too. My derm said that it "only" happens to people who use it for years, not months. Glad to know there is someone out there who used it for a shorter period as well. I used about five different topicals, switching every few weeks, getting more potent each time, for four or five straight months. I used Desonide for a little while, but it wasn't even the most potent I used. I only used them twice a day, but I do have very sensitive skin, and I think probably pre-rosacea (mostly social, anxiety flushing). I was also on prednisone twice. Once for one week and the second time for three weeks. When I came off after the three week dose I flared worse than before I was on it. That's the flare I'm trying to recover from now. I seem to be recovering from the flare the other night and am almost back to looking like I did before the flare. The burning has pretty much subsided, the itching/skin crawling still happens from time to time, but seems better. I still get flaky, but it seems to be a little better, too. I just wish the redness would start subsiding. Oh well, time will tell! Thanks again. I'm sure I'll have more questions as I continue this journey! ~J |
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Joined: 27 Apr 2007
| Posted: Wed Feb 13, 2008 4:20 pm Post subject: | |
| According to Dr. Rapaport, some people can get addicted to steroids as soon as four (4) weeks.
You seem to fit the perfect profile since you used increasingly stronger steroids...this is a classic case. I never increased my strength but what put me over the edge was the Prednisone. When I came off my last weeks use, I flared horribly. One thing to consider, if you have a predisposition to rosacea, you may not completely clear of the redness and may need some laser or IPL to help that. This is the question I ask myself all the time. Do I have a predisposition to rosacea? I had to go back and look at pictures to see because I never had flushing issues and nobody ever said anything about me having a red face. Like you say, time will tell. |
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Joined: 07 Jan 2008
| Posted: Wed Feb 13, 2008 4:52 pm Post subject: | |
| I know it hasn't been very long for me, but I'm going for a laser consult on Friday. I just want to see what they have to say. I don't want to do anything about it for at least six months, but I just want them to see it and talk about whether or not it's right for me. We'll see how it goes.
~J |
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Joined: 09 Jan 2008
| Posted: Thu Feb 14, 2008 4:32 pm Post subject: | |
| Melissa will have a day or two where the itching and redness subside then several days of itching and redness. It seems like shes starting to see more "good days" inbetween her bad days. For several months it was nothing but bad days. | |
Joined: 18 Oct 2007
| Posted: Sat Feb 16, 2008 6:48 am Post subject: flares | |
| boo2facialredness,
Have you been diagnosed with steroid rosacea or are you having atopic dermatitis flares? Steroid rosacea would generally resolve with 8-12 weeks of treatment with anti-biotics. If the dermatitis is persisting is is possible that it is not steroid rosacea but another skin problem. Alternatively you could unfortunately have both steroid rosacea and the original skin issue you presumably began applying steroids for. What steroid were you using and for how long. Generally steroid rosacea would be contracted through prolonged use of a strong flourinated steroid to the face. |
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Joined: 07 Jan 2008
| Posted: Sat Feb 16, 2008 3:17 pm Post subject: Re: flares | |||
I haven't officially been diagnosed with steroid rosacea. I was originally prescribed topical steroids for what my derm thought was a small spot of eczema on my face. The area kept getting worse (I think with used of the steroid). I was on four different steroids over a four or five month period. I used Pandel, Desonide, Hydrocortisone Butyral (sp?) .1% and Locoid. I had other areas pop up along the way and used the cream there as well. When I came off the steroids my face went crazy. I had terrible flares of redness with burning/itching/skin crawling sensations. I then started having issues of swelling (my eyes) and my skin also became very flakey. I've always had sensitive skin and flushing in social situations/anxiety, but never officially diagnosed with rosacea. The derm I saw yesterday thinks I'm having a "rosacea flare" either caused or worsened by the use of steroids. She is putting me on 100mg of doxy for the next couple weeks. Besides that I'm just using a gentle wash and moisturizer (she gave me a topical cream to use but it burned, so I'm not using that anymore). My redness affects my entire forhead now, both cheeks (looks like symmetrical butterfly under my eyes) and above my lip. All the places where I had applied the steroids. I still get the skin crawling sensation, wich the nurse thinks might be from the blood vessels. When I wash my face and put lotion on it get a little oozy, especially on my forehead. I've been tested for Lupus, but it came back normal. I had a couple biopsies done as well and they came back as "allergic contact dermatitis". Not really sure what's going on!!!! ~J |
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Joined: 26 Jun 2006
Location: BC
| Posted: Sat Feb 16, 2008 4:22 pm Post subject: | |
| What cream were you prescribed that burns your skin? If it is one with an antibiotic/metro ingredient then you should try to do what you can to use it. Even if you have to cut it to almost nothing with a gentle moisturizer. It's really important with a steroid rosacea flare to treat the skin topically. _________________ Do what you feel in your heart to be right, for you'll be criticized anyway. You'll be damned if you do, and damned if you don't. – Eleanor Roosevelt |
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Joined: 07 Jan 2008
| Posted: Sat Feb 16, 2008 6:17 pm Post subject: | |||
It's called Clenia. It's a sulphur and sodium sulfacetimide (sp?). I do have some Metrogel still. I could add just a dab of that to my moisturizer and see if it helps. I feel like it gave me a little relief before, but also burned, so I stopped using it. Any other recs for what I could use to treat it topically? I have Protopic as well, but I haven't tried that yet. I was going to try a dab of that with my moisturizer. Thanks! ~J |
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Joined: 27 Apr 2007
| Posted: Sat Feb 16, 2008 10:47 pm Post subject: | |
| ~J
Just wanted to voice my opinion, there are many on this forum so you have to be careful who you listen to. What I keep telling people is that if you truly have steroid rosacea you should avoid putting anything on your face....only a mild cleanser and maybe a moisturizer if it doesn't irritate. Also, the idea that steroid rosacea should clear by a certain time period is not accurate. Steroid Rosacea recovery is different for everyone. Out of the many hundreds of patients Dr. Rapaport had, it ran the gamut from 6 weeks to three years. It all depends on the factors I previously mentioned. And, steroid rosacea can indeed create all sorts of problems that could resemble contact dermatitis, atopic dermatitis, excema, Sebderm etc, etc, In fact many people with steroid rosacea go get patch testing done as well as visits to allergist etc, etc... In the end, it is the steroids that created the problem and if you leave things alone, your body will correct itself. Monte |
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Joined: 26 Jun 2006
Location: BC
| Posted: Sat Feb 16, 2008 11:52 pm Post subject: | |||||
Not sure what you are intimating with the first bit there, do you have some sort of credential that others are lacking which makes your opinion more valid and others less credible? As with most of us, I can only speak from my own experience. A history of full strength steroid application head to toe for 40+ years and having done the weaning off regularly to keep my load down. My journey to steroid Rosacea is in the photo section, should anyone think my opinions are pulled from thin air. Anyway. 
I disagree with that. I have listed what to do with the weaning off process a few times, and it is important to treat the skin as per your derms direction. Steroid induced rosacea skin has experienced an insult that will get worse before it gets better. A gentle withdrawal approach is best to try to keep the rebound flare down, slowly weaning off medication completely until you are only using moisturizer. To stop cold turkey is rarely recommended by a competent and sympathetic doctor. _________________ Do what you feel in your heart to be right, for you'll be criticized anyway. You'll be damned if you do, and damned if you don't. – Eleanor Roosevelt |
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Joined: 07 Jan 2008
| Posted: Sun Feb 17, 2008 2:14 am Post subject: | |
| I just wanted to say that I appreciate everyone's opinions, and understand everyone has had a different experience. What worked best for one might not work for another. I know that in the end it is my face and my decision to do what I think is best to heal (with the guidance of my doctor, of course!). I expect to get different opinions when I post, but I think it is good to hear all of the different views/experiences, as it helps me (and others) put the puzzle together.
I am so glad I found this forum b/c there are people here who have had or are having similar experiences. I truly do appreciate all of the time and information everyone has given in answering my many questions. I can see everyone's view and I have taken all of what you have said into consideration when trying to figure out how to heal the fastest and safest way. I went to a new derm on Friday and I'm trying her approach now. I am taking the doxy, but I just can't use the Clenia products on my face. It is entirely too irritating. I'm going to stick with moisturizer and gentle cleanser for the time being. It's been about 6 weeks since I've put any topical steroids on my face, and both the old and new derm agree that they don't want me going back to using any steroids on my face. Old derm said to just stop using anything but cleanser/moisturizer and new derm wanted me to try the sulphur stuff. I did once, and wanted to cry it burned so badly! I do have a prescription for Protopic coming, so I am going to try a spot treatment of that. I've read that it can help with steroid rosacea, and most likely with whatever underyling condition I started with. I am going to be very careful, though, as my skin is still pretty sensitive. Thanks again, and I'm sure I'll have more questions soon!!! ~J |
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