Author Topic: Prednisone and withdrawal update  (Read 8755 times)

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Offline fmt

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Prednisone and withdrawal update
« on: December 21, 2014, 06:01:40 PM »
My story starts with a rash on my forehead treated with sequentially more and more powerful steroid creams (Hydrocortisone, Elocom , Betamethasone).  After demanding a patch test 2.5years later, I found out that I am allergic to propylene glycol.  The cause of my rash was liquid laundry detergent.  The perpetuation of my rash was the result of being prescribed steroid creams that also have propylene glycol in it.  In the 2.5years I developed dependence on topical steroids.

On July 14th this year I made my first post on ITSAN.
I was at my darkest time of TSW.  I had watch Dr Rappaport’s interview and his comment that systemic steroids does not seem to work in the treatment of  TSW was at the forefront on my mind.  Yet, with my eyes swollen shut and the numerous cracks on my face oozing and bleeding, I was desperate to find more information and was hoping that someone have had success with prednisone.  There were many kind responses but none had first hand experience with prednisone and most essentially repeated what Dr Rappaport said.  In the state that I was in, with my face distorted beyond recognition, I succumbed to the treatment offered my dermatologist, that is Predisone 50mg stat,then 50mg everyday for 10days. 
At 50mg, the reversal of the inflammation was as dramatic as TSW itself.  Just one dose I could see the changes for the better.  However at 50mg, I was unable to sleep.  I was agitated, anxious and restless. These are all psychological effects of high dose steroids.
Because of this, I made a judgment call and reduced the dose to 25mg/day.
On the 10th day, I returned to my dermatologist and I began the tapering of the steroid dose.  I was given a prescription of 5mg prednisone, enough so that I can taper by 5mg every week until finished.
At 25mg, the swelling on my face has subsided.   The cracks and wounds are still present but crusted and the skin flaking.  The cracks between my eyebrows and the base of my neck remained.  Healing was slow.  I suspect because of prednisone suppression of wound repair.
At about 15mg, I developed rashes on my waist, my back and my right arm.  These are areas where I have never applied topical steroid or any other medication.  I believe that these rashes are the result of systemic corticosteroid withdrawal.(Prednisone)  I have read that some going through TSW also developed rashes where topical steroid was never applied.   I suspect that these individuals were suffering from systemic steroid withdrawal brought about from transdermal absorption of the steroid creams/ointment.  If this is true, then the use of topical steroid creams should carry the same precautions and contra-indications as systemic steroids. It seems that dermatology is the only specialty in medicine that does not treat corticosteroids with greatest caution.
I stayed at 15mg per day until the rashes resolved.  It took an extra week.
When I got to 5mg/day, my eyelids started to itch and swell again.  Again I stayed at this dosage for extra week and the symptoms subsided. 
I finalized the prednisone tapering at 2.5mg every other day and ended my last dose on October 10th.  In summary the duration of tapering lasted from July 14th to October 10th.
I have been free of Prednisone since October 10th.  There has not been any recurrence of rashes anywhere.  I do have scars between my eyebrows and the base of my neck.  I think these will be permanent. Periodically, these scars give me sharp pains but of lesser frequency as time passes.
So far, I believe that the prednisone method worked for me.  The oral regimen allowed me to methodically control the amount and wean myself of steroids.
I hope my report is helpful  and that prednisone may be effective for others in similar situations

My best wishes to all those still struggling.

Francis



Offline Nmopepisdn

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Re: Prednisone and withdrawal update
« Reply #1 on: December 21, 2014, 09:37:48 PM »
This is a very very interesting post and thank you for sharing Francis. Do you have any other symptoms of TSW such as itchiness, flaky skin?
Please keep us posted with your progress.
20+ years of intermittent TS use.
Steroid free: 12/2/13

Offline fmt

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Re: Prednisone and withdrawal update
« Reply #2 on: December 21, 2014, 11:20:30 PM »
During the last quarter of the tapering off prednisone there was itching with no rash.  My back and my legs would itch, but no visible signs of any difference from other parts of my body.
I have no symptoms(rashes) since Oct 10th.  The only thing that reminds of TSW is the sharp needle like pains coming from the scared areas.

slysaint

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Re: Prednisone and withdrawal update
« Reply #3 on: December 22, 2014, 10:09:29 AM »
This is very similar to what happened to me except I didn't have any tapering of the second course of pred but had rashes on my back torso,bum,legs,ankles, and arms and a bit on my face. I'd only used TS on my hands.   Did all your skin go very dry?  Is it still dry?

Offline fmt

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Re: Prednisone and withdrawal update
« Reply #4 on: December 22, 2014, 12:58:38 PM »
My skin feels normal.  No dryness.

Offline BrothaJeff

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Re: Prednisone and withdrawal update
« Reply #5 on: January 29, 2015, 02:19:50 AM »
Oh this is good to know. I've only read horror stories of weening of oral steroids. I'm glad it worked out for you.
Have you dealt with eczema or rashes through out your life or was it just this rash on your forehead that got you started on topical steroids?
I wonder how the withdrawal from orals would be with someone who has had eczema their entire life.
Stopped topical steroids April 2013

Offline fmt

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Re: Prednisone and withdrawal update
« Reply #6 on: April 21, 2015, 01:09:14 PM »
I had a  rash on my forehead originally.  I had rashes on other parts of my body while I was using betamethasone.
The interesting observation that I realized during my withdrawal is that the initial symptom is a rash similar to the original.
When do we know what we are treating,the original rash or a steroid induced rash? 
In my case my original rash was caused my allergic contact dermatitis to propyleneglycol.  Once I eliminated that, I assume that the subsequent rash was steroid induced. 
Sounds like you need to know whether you have the original eczema or steroid induced rash.   

Offline SweePea

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Re: Prednisone and withdrawal update
« Reply #7 on: April 24, 2015, 10:18:29 PM »
Glad prednisone worked for you, but it was a round of prednisone that started this whole nightmare for me. After the prednisone I got a mystery rash on the top of one hand. You can guess the rest. Just sharing my experience as a caution to anyone reading this and considering taking prednisone. It might not help everyone.
Stopped using ts Nov 2011
Used ts for 3 years and 4 months

slysaint

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Re: Prednisone and withdrawal update
« Reply #8 on: April 25, 2015, 05:41:44 AM »
Sweet pea,  same here.  Things started to go really bad after the prednisolone,  starting with strange big itchy spots up my forearms, all my skin turning super dry, then the rashes on my back, bum, legs feet, etc etc.  It progressed while I was on the second course of orals.  I read someones blog who said that her skin changed completely after orals and hadn't been the same since.

Offline SweePea

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Re: Prednisone and withdrawal update
« Reply #9 on: April 28, 2015, 07:10:58 PM »
Wow.
Stopped using ts Nov 2011
Used ts for 3 years and 4 months

Offline BrothaJeff

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Re: Prednisone and withdrawal update
« Reply #10 on: June 03, 2015, 01:28:56 PM »
Yikes. That's scary. Were you guys tapering off or did you guys just stop and then the rashes started to appear?
I have been considering it. I was curious how many people were able to taper off of it.
I'm just scared of all the side effects. Weight gain, Muscle loss, bone density loss, risk of diabetes and many more...
I also don't want to go through this horrible nightmare again from the start.
Stopped topical steroids April 2013

Offline fmt

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Re: Prednisone and withdrawal update
« Reply #11 on: June 06, 2015, 11:27:22 AM »
 I am sorry for those who tried prednisone and did  not work.  I am also sadden for those where prednisone made their condition worse.  For myself, I cannot imagine not having prednisone.  I have scars on my face now and without prednisone I believe the scars would have been much worse.
I am at that age where I accept that I will not make it to GQ magazine and I can boast that I was in a brawl and one should see the other guy.  Joking aside, I see the scars everyday.
I was busy living life free of TSA until a fellow member messaged me and prompted me to come check the forum.
The pharmacology of prednisone is well documented and consistent. The problem is that the physiology from one person to the next is variable. This variation will also account for why different individuals have different  capacity to recover.
 Cortisol is the hormone that our body produces to regulate the physiology that we have.  When we become TSA we have essentially disrupted the normal cortisol body regulation.  We may have started off with a dermatological condition but now we have an endocrine disorder.
If one reads the reports of those suffering from auto-immune diseases such as SLE where often they are treated with massive doses of prednisone, they report rashes in various parts of their body during the tapering process.  These individuals know their “hypo-thalamic-adrenocortico axis” better than their physicians. They adjust the dose according to how their body is responding. They guide their own tapering process.
When one goes on prednisone, one have essentially switched from an uncontrollable method of giving a drug to one where one  change the dose by increments. One also have moved to a relatively localized area to a wide spread one .  However one can question if  a topical form is really localized.  If the drug can get to the dermal layer, it can also get to blood vessels and hence can travel to other parts of the body.  That would explain why I got rashes in places where I never applied betamethasone during TSW.
I believe that the success of using prednisone rest on the tapering process which will vary with the person and therefore the guidance of an experienced clinician is  needed.(this is a big part of the problem).  Since it is really an endocrine disorder, an endocrinologist might be a better person to do that?
I also wonder how many have had success with prednisone and  like me busy doing other things and  have forgotten to report their success. The ones where it has failed still suffers and continue with the forum

Lastly, one makes the assumption that everyone here at this forum are suffering from TSW.
Even though  the signs and symptoms may be the same,it does not mean that the disorders are the same.  This may also explain failures and successes. One can also have TSW with the underlying skin problem still present which further confuses the matter. 
We all started with a dermatological problem. Mine was a straight forward allergic contact dermatitis. That is not the case for everyone.
As always, a correct diagnosis is  of paramount importance.
A wrong diagnosis only leads to wrong and ineffective treatment.

Offline SweePea

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Re: Prednisone and withdrawal update
« Reply #12 on: June 07, 2015, 09:03:32 PM »
Quote
If one reads the reports of those suffering from auto-immune diseases such as SLE where often they are treated with massive doses of prednisone, they report rashes in various parts of their body during the tapering process.

I wish I had known this when I was given prednisone. I wish the endocrinologist I saw when I got the mystery rash knew this. And I wish the dermatologist that the endocrinologist sent me to knew this. Then I would never had been misdiagnosed as having adult-onset eczema and given the ts. And my life would not have been ruined. And I would not be sitting here with the blistering rashes that are preventing me to this day from living a normal life.
Stopped using ts Nov 2011
Used ts for 3 years and 4 months