Home         Forums  

Go Back   Marrowforums > Treatments > Transplants
Register FAQ Search Today's Posts Mark Forums Read

Transplants Bone marrow and stem cell transplantation

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Feb 11, 2013, 12:29 PM
BrianFlaigmore BrianFlaigmore is offline
Member
 
Join Date: Jul 2012
Location: San Diego CA USA
Posts: 27
Chronic GVHD Skin suggestions?

Hello all,

I am now about nine months post-transplant and it's becoming more clear that I am having some GVHD on mostly my face. It's really not terrible but enough to keep my doctor prescribing me more and more. It manifests as really dry skin and a circular rash on my neck and two blotches under my eyes. Right now I am on Tacrolimus, Sirolimus, and prednisone. The Sirolimus has successfully lowered my platelets, but nothing else (they were in the 100's but now in the low 80's). The only thing that seems to do anything is the prednisone, which we keep going between 10 and 20 mg per day. I know that doesn't sound like a lot but I have become very sensitive to it for some reason. I get night sweats all night long, crazy mood swings, and muscle cramps all the time. I was on 80 mg for almost a year and it didn't affect me as bad as when I'm at 20 mg now.

My question is, has anyone had any success in combating chronic skin gvhd without steroids? I am trying lots of lotions, but sometimes they seem to make my skin have more of a burning dry sensation.
Any information would be great.

Thanks! Brian Flaigmore
__________________
26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
Reply With Quote
  #2  
Old Mon Feb 11, 2013, 03:23 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,345
You may want to look into photopheresis for the GVHD of the skin.

http://my.clevelandclinic.org/servic...opheresis.aspx
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
Reply With Quote
  #3  
Old Thu Jun 27, 2013, 02:10 AM
selina selina is offline
Member
 
Join Date: Dec 2010
Location: usa
Posts: 5
still on steroids

Hello, I am still having GVHD and I'm 2.5 years post transplant. I have been on prednisone for all but 6wks of that time. I am on the other meds too but every time we try to discontinue to steroids, I have a major rash and start having gut issues. I have been weaned down to 20mgs but that was 6 months ago. We have tried every anti rejection meds out there. My next step is the procedure that she is talking about but only a few hospitals do it.
Reply With Quote
  #4  
Old Fri Jun 28, 2013, 01:07 PM
BrianFlaigmore BrianFlaigmore is offline
Member
 
Join Date: Jul 2012
Location: San Diego CA USA
Posts: 27
Thank you for the responses.

I hope that they find something for you soon. The bouncing back and forth on the steroids is my least favorite part these days. Do you have side effects from the prednisone? How are your muscles?

For me every time the pred. gets increased, my Dr. puts me on voriconazole, which I am not a fan of, which also makes the tacro and siro numbers jump. Are you in a similar boat?

My doctor does not want to try the photophoresis at this point as it requires a line (is that correct?).

Last week he started me on Tacrolimus cream for the blotches on my face. They have disappeared completely and now we are reattempting a slow taper. I hope it holds! Does anyone have any success or information about the tacro cream? I have heard that it is not good to be on for a long period.
__________________
26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
Reply With Quote
  #5  
Old Tue Jul 2, 2013, 05:17 PM
KathyM KathyM is offline
Member
 
Join Date: Mar 2013
Location: Philadelphia, PA
Posts: 23
I don't know how much help I can be - but my husband used the tacro cream for about a month after his transplant. It worked very well. We had a routine - I would wash his back with Eucerin Body Wash, then rinse, then lightly pat it dry. I used paper towels. Then I would slather the cream on his back. He also had the rash on his arms, arm pits and face which he washed and creamed up himself.

He got a lot of relief from the cream. His rash is almost gone now - he just has scaly bits of flakes and they've told him to stop using the cream now.

Best of luck - I hope this helps.
__________________
Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Online Course - Managing Chronic GVHD 100+ Days Hopeful Transplants 1 Thu Oct 5, 2017 04:47 PM
Acute GVHD if the skin MDSPerth Transplants 7 Sun Feb 9, 2014 11:57 PM
Chronic GVHD Mucositis Question sherryjac2 Transplants 4 Wed Oct 9, 2013 10:04 AM
living with GvHd ? now on my skin mishka nichols Living with Illness 0 Tue Mar 2, 2010 11:51 AM
chronic GVHD micho Transplants 1 Tue Aug 7, 2007 02:16 AM


All times are GMT -4. The time now is 03:50 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2019 Marrowforums.org