Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Mini Allo HCST. Wife now has scleroderma. Suggestions?


  • Please log in to reply
7 replies to this topic

#1 Wife's Caregiver

Wife's Caregiver

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 06 June 2008 - 02:08 AM

Hi,

I'm new to the forum. Please allow me to give some background...

A little over two years ago my wife had a "mini allo" or matched-unrelated-donor stem cell transplant at the Mayo Clinic (MN). The original, underlying disease was chronic lymphocytic leukemia (CLL). She was an 11q22 gene deletion. Her transplant was the first non-fully myloablative transplant performed by the Mayo. During the transplant she underwent low dose radiation and high dose chemo. Rituxamab (Rituxan) was one of the agents used in the chemo conditioning prior to transplant. In addition she had a couple of other blood relating issues with the CLL (Evan's disease and ITP). The good news is that all of these were cured by the transplant! Her blood counts have returned to normal levels with no sign of the underlying disease(s) present.

The bad news is that she developed graft-versus-host-disease (GvHD). The GvHD has turned into what appears to be a severe case of diffuse scleroderma. Her current symptoms include skin thickening on lower and upper forearms, lower legs, thighs, buttocks, and some minor involvement on her face and back. Time period from onset of thickening on forearms to today is about 4-5 months. So far there is no indication of organ involvement.

The Mayo doctors are recommending a series of Rituxan treatments (4 infusions over 4 weeks). Question? Has ANYONE ever been through a similar situation? What (if any) are the success rates with Rituxan to treat scleroderma?

Of course her case is unusual. In her case I suppose (and hope) it is possible that whatever created the problem could reverse itself and fix the problem. Most people with chronic GvHD tend to require less immunosuppression as time progresses. She is current using 1000 mg/daily of CellCept (Mycophenolate), 100 mg/daily Cyclosporine, and 25 mg/every other day Prednisone as suppressive agents.

Any help and direction would be appreciated.

Sincerely,

Bruce

#2 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 06 June 2008 - 02:25 AM

Hi, Bruce. I am sorry to hear about your wife's unfortunate health developments, but want to welcome you both the ISN Sclero Forums. Hugs to you both.

I don't have any personal experience with Rituxan or transplants, but a number of members will be able to share relevant information. Everyone here is extremely helpful and supportive. We do have a page on Graft-versus-Host Disease (GvHD) which may prove useful to you.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 06 June 2008 - 05:57 AM

My doctor also prescribed Rituxan but then my insurance company denied it due to it not being approved for the treatment of sclero but for rheumatoid arthritis. So instead I'm doing IVIG therapy along with Cellcept. I also have the systemic sclero with organ involvement and lots of gastro problems; Sjogren's; Raynaud's; Polymyositis; and peripheral neuropathy. I hope your insurance will in fact approve this for you. If not, being this coming from Mayo, who are the best, I would appeal the decision and see what happens. I did this for the IVIG therapy and they reversed the insurance company's denial and I was able to receive the treatment for 3 months. Only 3 months though. The insurance company wants proof that it is in fact working before they will approve any more treatments. It's amazing how our health is tied to what our insurance will allow.

Good luck to you.

Warm hugs,

Peggy

#4 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 06 June 2008 - 06:33 AM

Hi again, Bruce. The link to your blog has now been added to our GvHD page:

Blog: Jackie Sue We Love You. Jackie has GVHD. THe blog covers her progress after her mini-allo MUD transplant. Her transplant was the first one to be performed by the Mayo Clinic. Bruce and Jackie.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 06 June 2008 - 12:10 PM

Hi Bruce,



Welcome to the Sclero Forums. I'm so sorry to hear about your wife. I do hope they are able to help her. I have nothing else to add to all the other good advice you've received, but I did want to welcome you and send positive thoughts your way.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 06 June 2008 - 04:04 PM

Bruce,

I'm sure going to keep my fingers crossed for your wife... and for you!

It sounds as though your wife is in good hands while she weaves through all of this.
I also hope that all of this does reverse itself, as you hope... Obviously, she and her body have been through plenty.

My best to you both and may the treatments get the results the doctors are going for.

Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 Bunky

Bunky

    Senior Bronze Member

  • Members
  • PipPipPip
  • 73 posts
  • Location:California Wine Country

Posted 06 June 2008 - 05:57 PM

Hello Bruce and welcome!
Wow, you and your wife have been through the ringer! I have no experience with rituxan, but there are others who may have. I sure hope you both find some answers soon.
Take care,
Bunky

#8 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 06 June 2008 - 07:49 PM

Bruce,

I have no experience with rituxan but also wanted to welcome you and your wife. Good luck in your pursuit of answers; you have come to the best place for that.

Thank you for sharing your blog and your story. I look forward to reading it.