Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Red burning, itching skin

  • Please log in to reply
5 replies to this topic

#1 violett



  • Members
  • Pip
  • 1 posts

Posted 08 April 2009 - 04:31 PM

Hi. I'm new here. I was searching the internet for going off Cellcept and found this discussion. I'm on 3,000 mg daily and today is my third day off it cold turkey. My doctor had me quit because I'm having a wisdom tooth removed tomorrow. I have to wait another 3 days after, then I can resume taking Cellcept.

As I read the posts, I came across one where the person had red, burning skin. I immediately registered and joined, so I could correspond with that person. I have erythroderma, an autoimmune disease that attacks the skin and eventually, other organs. I have red, burning, itching skin that gets so bad that I have chills and fever. My body cannot regulate it's temperature.

It is miserable, and I was hoping to find others to talk to who know what I go through. You guys are close - some things are the same - the body aches and joint pains, loss of energy, etc.

Does anyone on here have what I do? Or at least some of the same symptoms?

#2 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 08 April 2009 - 05:35 PM

I'd like to welcome you to the ISN forums. I'm glad you found a posting that got you to join in. I hope you're not having any side effects from coming off cellcept. I'm not a doctor, but from what I read cold turkey isn't a problem.

I think many of us can relate to the itchy, burning skin; however, you got me on the erythroderma. I had never heard of it until now. Is that why you're taking the cellcept? I have dry, red, itchy skin but nothing near to the extreme you're having to deal with. I'm so sorry that you are having such extreme symptoms. Hopefully someone else can relate more to what you are going through and help out.

I hope your wisdom tooth extraction goes well with no complications. Please keep us informed on how you are doing.

big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Penny


    Silver Member

  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 08 April 2009 - 06:03 PM


Welcome to the ISN forums.

I am so sorry that you are going through erythroderma, I did a quick search on it and it looks like a very uncomfortable condition to deal with.

Many of us can understand and deal with very dry skin that itches and burns, but not even close to what you must deal with on a daily basis. This does not mean that you should give up looking here for common ground. We do have experience with debilitating conditions and in that we definitely share many things, on the medical pages you will find many links on autoimmune skin diseases and in the support area there are wonderful links for coping and dealing with the different issues that are universal to chronic conditions.

I hope that the extraction goes well, and like Janey said, please keep us informed as to how you are doing. You have joined a site that is known for hugs and caring filled with people who are more than willing to share their shoulders for crying and their laughter when you least expect it.

Warm hugs,

#4 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 09 April 2009 - 02:54 AM

Hi Violett,

Welcome to the Sclero Forums. I'm so glad you've joined. I also have the issue with burning itchy skin at times. Sounds like you really have a bad time of it. It must be miserable.

I think you will find a wealth of information, support and friendship here.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 Honey


    Senior Bronze Member

  • Members
  • PipPipPip
  • 55 posts

Posted 09 April 2009 - 03:38 AM

Hello and Welcome.

My itchy skin is all around my core, especially around the ribs, and flares up every now and then. It started around the time I was diagnosed with systemic sclero in January. I can feel it all the time, but at certain times it is really loud and clear.

I use menthol anti-itch lotions. I like the menthol flavor to the lotions.


#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 09 April 2009 - 09:59 AM

Hello Violett

Welcome to the forum, it seems you're the unique among the unique!

I'd never heard of erythroderma either and had a google at it, don't sound much fun I have to say.

As well as systemic sclerosis I have erythromelalgia which causes the skin on my hands, feet and legs to itch, burn and go bright red. You can actually feel the heat coming off the skin. Needless to say it's not in your league though.

I've come off Cellcept "cold turkey" twice and had no adverse reaction either time.

I hope you find some help on this forum and can guarantee you'll find support.

Take care.

Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)