Wednesday, 18 April 2012

A-Z of Corticosteroid Withdrawal: Burning

B is for Burning

Eczema should not burn.

Eczema itches, stings, flakes and weeps, but it should not burn.

Therefore, if someone has an eczema-like rash and it is burning, it may not be eczema, it may be steroid cream addiction.

I first heard this on a teleconference on corticosteroid addiction with Dr Rapaport MD, an expert in this subject, who has treated over 2000 people with steroid cream addiction. When I heard him talking about the fact that eczema does not burn, it was like the penny dropped and the scales fell from my eyes. it was the first time that I realised that this fine red rash covering my body was not eczema at all. it was Red Skin Syndrome. I recalled the eczema I had as a child. He was right. It never burned. Yet now, after years of steroid use, my skin burned, oh boy, did it burn! It burned every time I tried to stop the steroid creams for a day or two. It burned if I tried to use an emollient on my skin instead of a steroid, and the weird thing was that I never made the connection in my head and thought that there was anything odd about my "eczema".

Of course, realising what is wrong is one thing. Dealing with it is another. Once I stopped the steroid creams the burning started big time. The burning reaction varies depending on the potency of steroids used on the skin and the duration, but it is always nasty. Within two or three days of stopping the steroid creams, my face felt as if it was on fire. The skin was bright red and hot to the touch. this is caused by the fact that the blood vessels in the skin have been suppressed for so long and can finally "run free". This causes some vessels to almost double in size as the excess nitric oxide in the blood dilates them, causing the skin to redden considerably.

In my case, the burning lasted for about two months and then started to subside. Thankfully, now I have been off the creams for five months, burning is no longer an issue for me. I think it is one of the most intense initial symptoms, but also one of the first to go. if you google the term "steroid rebound", you will find a lot of information about the burning associated with steroid withdrawal. it is the reason that many decide to taper off steroid gradually, rather than quitting cold turkey, but that is a decision for the individual to make.

Here is a picture of my burning skin, taken very early on in withdrawals:
And here are some pictures of others with burning skin due to corticosteroid withdrawal:
Here is a quote from a medical article by Betsy Bates in 2003:

"Dr. Rapaport, who confessed he is "fairly passionate about this subject," believes dermatologists are too quick to prescribe superpotent corticosteroids and to dismiss as "crazy" patients who develop a classic pattern of symptoms that include burning sensations that may seem disproportionate to clinically apparent skin findings.


He described 100 patients who presented with a consistent pattern of clinical symptoms after having been treated with corticosteroids for 2 months to 40 years, often by a series of physicians who prescribed increasingly potent formulations when symptoms failed to resolve. In these patients, many of whom are atopic, a chronic eczematoid rash is accompanied by what he termed "fierce burning."The rash may appear in odd locations, and it does not worsen with wind, dry winter weather, or harsh soaps."

And here are some comments from the members of the Google forum:

"I'm experiencing burning on my face and
neck for the first time since August this week. The back of my neck is
particularly bad. The weird thing is that the skin looks practically
normal, despite the feeling like there's a blowtorch on it. Hardly any
oozing either. Dr Rap describes this in his paper - disproportional
burning in relation to how it looks."



"The burning skin seems to start getting more intense from 4pm each
day.  The nights can find me burning up so much on neck arms shoulders
that lying down becomes unworkable - requires even more antihistamines
and valium before relief comes
."

"I tolerated the burning better as it eased up in my baths. I also got relief
for the burning from ice and tylenol and rest. Most of my burning is now in
7th month,  is gone and it is the rashes, oozing, red bumps on my stomach
and arms and insane itching."


Therefore, I repeat what I said at the beginning: Burning skin may be a sign of steroid cream addiction rather than a symptom of regular eczema.




5 comments:

Spe said...

Great job, Louise, Im really happy u write so much! Yeah baby, we need to put all we know on the net...:)I was on a group meeting for young doctors today and I shared my story with the withdrawal...They all accepted it so well! I was so happy, cause I thought there is no hope to meet sane doctors who will understand what Im talking about. I had to many bad experiences with the ones who didnt listen to me. But here it was different, they paid attention and they understood...:)They even read my blog;)So after all, Im noticing we just need to find the right people and when there will be enough of them the news will spread like fire!:)))
Good luck, Louise, <3

Loveunknown said...

HI louise first of all your blog has answered so many questions for me.thank you so much .i've been suffering from eczema since birth but only recently have i had such a bad flare up in ages then i read this part of your blog about the burning and realised this is what is happening to me . I have been sleepless for a few weeks bcos of this and wearing clothes even burn my skin .at least now i have answers next step for me is to try and get through this .i did more research and so I'm trying out coconut oil and a healthy diet if it works i'll be sure to share out the result .thanks again and i hope you get through it too :)

Louise said...

Hi Loveunknown!

I'm glad that the blog has helped you. it is a big learning curve and it will be interesting to see how the healing process works.

I find the issue of burning skin really pertinent. Burning is a sure sign of steroid addiction and withdrawal and what sets it apart from regular eczema. When I thought about it, it was like a lightbulb went on in my head. My eczema never burned like this!

I'm so glad you have found the answers. The healing process is hard and I will be interested to see how you get on with the diet and coconut oil. Hopefully you will fully heal. Please keep me posted and bear in mind that this is a marathon rather than a sprint. Healing takes time but is well worth it. x

Unknown said...

Hi , I am so glad I found this site . I went of my steroids last wed thinking I was doing the rite thing for myself, I had been using elocon for the past yr on my face and neck, the very next day my skin started to flare, by the 2nd day my whole face was red raw and burning, with lumps and bumps everywhere . I went to see a detmotologist , who put me on rozex and antibiotics. Another 4 days later and a visit to the hospital I rang the doctor again only to be told he was on holidays, they put me onto another one who was fantastic, he has taken a biopsy and skin scrapes . He took me off the rozex and prescribed me anti fungal cream , plus a gel for my eyes . I also read about l-lisine and started taking those. It is one 3 days later and the burning has diminished , still red, and itchy, but am glad the burning has depleted. In my whole life I have never looked like this , but now I have read this site I now know what has happened. But a shame the doctors didn't. I have a appointment with the doctor for Mon , I will be having a very long talk about red skin syndrome. I will never go on steroids ever again. Thanks once again for this informative site. Oxo

Louise said...

Elaine, please consider visiting the forum on itsan.org if you need any support with this. X