Author Topic: Updates of those who have come off immunos or tapering?  (Read 1598 times)

0 Members and 1 Guest are viewing this topic.

Offline elliebee

  • Newbie
  • *
  • Posts: 12
  • Karma: +0/-0
  • Gender: Female
Updates of those who have come off immunos or tapering?
« on: August 02, 2016, 03:50:00 PM »
Hi guys
Has anyone (still on the forum) managed to come off immunos without flaring hugely and rebounding? or tapered off and had their skin stay ok and not go back to the way it was before immunos?
Does anyone feel like they healed at all while on immunos?\

I'm on MTX and have been on it around 10 months. Although my skin is amazingly good I'm pretty worried about the longterm effects these drugs are gong to have on me and also whether my skin will be worse when i get off the MTX than before i was on them :(
Pre-TSW: 20 cumulative years on medium to potent TS. 2 steroid shots, 4 short courses of oral prednisone.

Started TSW: 17 august 2012
2.5 months- no longer house bound
6 months - normal life and no baths
12 months - residual 'normal' eczema
1.5 yrs- lots steroids for eye operation caused flare up

Melania

  • Guest
Re: Updates of those who have come off immunos or tapering?
« Reply #1 on: August 10, 2016, 03:47:06 AM »
I too would like to know. As my dr is slightly horrified by my skin, and wants me on them. 

Offline SAF

  • Newbie
  • *
  • Posts: 5
  • Karma: +0/-0
Re: Updates of those who have come off immunos or tapering?
« Reply #2 on: August 10, 2016, 11:46:44 PM »
I just finished tapering off Imuran.
Probably been two months now.
I haven't rebounded yet.
I'm unsure how long that drug would stay in my system though.
I tapered down without flares.
I have a couple of eczema spots that come and go.
For example my hands if I don't use gloves they get itchy and a little pink.
I do honestly believe I healed while on them.
I've been very curious to see if I'll relapse.
Hopefully that helps you out in some way :)


Offline faceofmichele

  • Semi-Newbie
  • **
  • Posts: 31
  • Karma: +0/-0
Re: Updates of those who have come off immunos or tapering?
« Reply #3 on: August 18, 2016, 01:43:27 PM »
Hello - I posted back in April. I was on Imuran for almost a year and was planning on tapering, but got really sick and ended up having to stop taking it for quite a few weeks (to get my immune system back up and running). I was very clear while sick (which typically happens, I think, because my immune system kicks in to try and fight the sickness), but when the  rash did not come back after getting better, I never went back on Imuran. It has now been about 4 months or so and my skin has NEVER looked better- totally perfect. No flares (yet) and I'm just kind of waiting....

On a side note, I was not using any kind of moisturizer or anything on my skin while in withdrawal and I am sticking with that. My face (where the rash was the worst) has not touched soap, lotion, makeup, sunblock, etc. for well over a year. I occasionally put sunblock on my arms if I am in a tank and in the sun, but that is it. No lotions or anything that could possibly upset my skin and so far, so good!

Offline davidjatt

  • Newbie
  • *
  • Posts: 21
  • Karma: +0/-0
Re: Updates of those who have come off immunos or tapering?
« Reply #4 on: August 29, 2016, 01:10:49 PM »
Ive posted a few times on here in the past, however haven't done so in a while. I'll post this message elsewhere on this forum as well, just so that the message gets out. In a nutshell, I've had a torrid time. My first attempt at TSW lasted 10 months before I was hospitalised with sepsis. So I caved in and returned to using moderate TS twice a week all over my body (as I had been doing for the last ten years). I did this for a few months whilst on mycophenolate. I didnt improve much and contracted shingles, so I quit the immunos. This was around March 2016 when I decided to give tapering TSC a go. I tapered from Betnovate RD to Eumovate, and this seemed to work. I managed to go March - August (5 months) without any TCS but last week had a massive full body flare, which I just couldnt tolerare and I had to go back TS. I have to work and raise a young baby so severe TSW where I am bed ridden with full body soreness is just not an option. I think that infection was the cause of the recent flare - I seem to be easily infected and the problem I have is that without any TCS, the staph has the opportunity to proliferate and this worsens the inflammation and makes it widespread. TCS either reduces the staph load or ensures that the skin remains intact so as to prevent infection.

So, in summary, I am back on the 2-3 times a week application of moderate TS all over body (I try not to involve the legs, but they remain in a bad state as a result. Funny I can cope with my legs being bad but anything on my torso and back I just cant tolerate clothing). I do believe in TSW however there are also other complicating (if not driving ) factors in my case. For me, cessation of TCS will not work alone - there has to be something to help the sking getting inflamed and leading to infection / full body flares. I've tried everything including sea salt, hibiscrub, sudacrem, ACV etc etc - nothing works.

I now have the option of Methotrexate which I am hesitant to go with because its very hard on the liver  - (add a combination of a powerful hepatoxin to moderate alcohol consumption and all the prescription drugs ive taken antihistamines, antibiotics, imuran, cyclosporin and it makes me worried about liver damage. 

Im therefore at a position where TSW does not appear to be a feasible option.  I will try to taper once again to a TCS strength that does the least damage possible and I am waiting in hope for  the next generation of biologics to save me- I'm not sure when these will be available or whether they will work. At the moment, I have to accept that TSW isnt possible and that in order to function, I have to carry on with the TS.   

Offline CarrieLou

  • Semi-Newbie
  • **
  • Posts: 90
  • Karma: +5/-0
  • Gender: Female
Re: Updates of those who have come off immunos or tapering?
« Reply #5 on: April 02, 2017, 12:36:19 PM »
Hi.  I have been off methotrexate eight weeks. My maximum dose was 25 mg a week. I did a very slow and prudent taper of about 2.5 mg every three or four weeks. I did flare once at the beginning of the tapering, but that is it.   My skin is not flaring now. I do have a few trouble spots due to dry skin and environmental irritations. But I am convinced that I am done with methotrexate and that my withdrawal is no longer systemic. You can do it! I have been on this journey nearly 5 years. My skin is still getting stronger. But overall is very, very good!
Quit steroids in June of 2012. Used topicals medium to strong strength for 8-10 years. Used a cortico-steroid inhaler also. Used a little bit of protopic

Offline Wendy

  • Full Member
  • ***
  • Posts: 118
  • Karma: +0/-0
  • Gender: Female
  • Used topicals 40+ years Stopped February 2012
Re: Updates of those who have come off immunos or tapering?
« Reply #6 on: June 09, 2017, 04:52:57 PM »
Hi carrielou, I quit ts at the beginning of 2012 and used oral immunsuppressants from about the start of my third year onwards. I'm about to plan to start reducing from my usual dose of 20mg methotrexate a week and wondered how you're doing now, since you last posted in April. I'm thinking of getting a pill cutter and going for mini-reductions.

How are you finding things further down the line? Hope things are going okay xx

Offline CarrieLou

  • Semi-Newbie
  • **
  • Posts: 90
  • Karma: +5/-0
  • Gender: Female
Re: Updates of those who have come off immunos or tapering?
« Reply #7 on: June 11, 2017, 12:40:03 PM »
Hi Wendy. We have been on a similar timeline! A prudent tapering of mtx is a very good plan. In retrospect, I think I might have tapered too rapidly after I got down to four 2.5 mg pills a week. I sped up at that point, and should have continued my slow progression. However, Here I am and my skin is really good. I believe I am done with TSW...but...I do have some really crappy contact dermatitis that I am trying to figure out. Face, neck, hands, right armpit are inflamed. And my heals never really healed, nor did the tops of my toes. I cannot stand shoes. I can't tell if it's leather or vinyl or rubber or fabric, but something  on my feet is trouble. I am getting patch tested at the end of June. I think this is unique to me.  I am atopic and will probably always have issues of some kind. I am considering dupilumab...I cannot live in this bubble any longer.  I hope your taper goes well.  It's pretty exciting!!
Quit steroids in June of 2012. Used topicals medium to strong strength for 8-10 years. Used a cortico-steroid inhaler also. Used a little bit of protopic

Offline Wendy

  • Full Member
  • ***
  • Posts: 118
  • Karma: +0/-0
  • Gender: Female
  • Used topicals 40+ years Stopped February 2012
Re: Updates of those who have come off immunos or tapering?
« Reply #8 on: June 11, 2017, 03:47:03 PM »
thanks for replying Carrielou, wishing you continued improvement.

If it's possible, I will take it slowly (just hope not to get thrown off early with dodgy blood results etc). I'm in the late bloomer category and  shifted into full body at 20 months rather than at the beginning. It's good to know where things are at and review our strategy if needs be.

All the best xx