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Biomarker for Diffuse Scleroderma skin has been discovered!


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Graft vs Host disease


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#1 Chip

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Posted 23 November 2014 - 01:04 PM

Hello.

 

I'm new. :bye:
Anyone out there suffering from scleroderma as part of GVHD?

My husband was diagnosed in summer following his Stem Cell Transplant for Acute Myeloid Leukemia (AML).

 

Finding it difficult to get support :(



#2 miocean

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Posted 24 November 2014 - 04:04 AM

HI Chip,

 

You are the first to bring this up in the years I have been using this forum as far was I can remember. Please keep in mind that none of us knows what caused our scleroderma. Regardless of what caused it we are here to help and support you and your husband. 

 

Can you let us know what symptoms you husband has that led to the diagnosis of scleroderma and what kind of scleroderma he has? We can help more with that information.

 

Thanks for checking in with the forum,

 

miocean


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#3 Joelf

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Posted 24 November 2014 - 10:12 AM

Hi Chip,

 

Welcome to these forums to you and your husband!

 

I'm very sorry to hear that your husband is in such bad health. I've included a links to our medical pages on GVHD and Stem Cell transplants which I hope you'll find helpful and informative.

 

I'm afraid I can't offer you any first hand advice, but feel hopeful that you and your husband will be able to get plenty of support from our forums.

 

Kind regards,


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#4 judyt

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Posted 24 November 2014 - 11:08 AM

Hi Chip,

 

A warm welcome from me too, and I hope we will be able to give you help and comfort at this time.

 

I don't know anything much about Stem Cell Grafts, which I think is what your husband had, but I did know of one man who developed Systemic Sclerosis after a graft when he was suffering from Non-Hodgkins Lymphoma.

 

Keep coming with your questions and worries and we will do our best to help.

 

Best wishes

Judyt



#5 NorthStarHope

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Posted 24 November 2014 - 02:24 PM

Hi Chip,

 

 Just wanted to welcome you and wanted to let you know that sclero forums have truly helped me through some very rocky roads. My sister has diffuse scleroderma and we have been through some very rough times.

 

 Everyone here is wonderful!! At times I don't know what I would have done without my friends here. I truly hope you will find support and comfort here as well.

 

                  Please take care, NorthStarHope* :emoticon-hug:  :emoticon-hug:  :emoticon-hug:  :emoticons-i-care:


northstarhope* :emoticons-i-care:  :thank-you: 


#6 Amanda Thorpe

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Posted 24 November 2014 - 02:43 PM

Hello Chip

 

Welcome to the forums, now I know what's worse than scleroderma, scleroderma as a result of cancer! I mean are you kidding me! I am so sorry that you and your husband have to contend with this wretched disease now as well. NSH (northstarhope) is quite right in that you will get first rate support here as we all know scleroderma up close and personal, whether as the person with it or loved one of.

 

I guess that you already have your coping strategy in place, having made it through cancer, but I hope that being here helps.

 

Take care.


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#7 Amanda Thorpe

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Posted 24 November 2014 - 02:45 PM

Hello Northstarhope

 

How lovely to hear from you after such a long time! :terrific: How are you and how is your sister? I hope you're all as well as you can be. :emoticons-yes:

 

Take care.


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#8 Chip

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Posted 06 December 2014 - 11:22 PM

Hello again. Sorry it's taken me so long to come back, I kinda forgotten I'd posted.

We are in the UK first of all. He had a Stem Cell Transplant in Feb 2012.

The scleroderma started about a year ago with swollen ankles and fingers, especially worse in the mornings. That started to subside and his skin got tight and the muscle/tendon contractures started, now he can't put his shoes and socks on, can't barely move his ankles, can't get on and off chairs, can't lift his arms above his shoulders.

He was on fairly moderate dose of steroids before hand and in August was started on Photopheresis ( ECP); the steroids have been reduced down to 7mg. He's also on Penicillamine - but the doctor is discussing switching to Imatinib. He also takes Gabapentin for nerve pain in his legs which he suffers with at night.

(Obviously he's taken loads of other drugs for other things)



#9 Chip

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Posted 09 December 2014 - 12:50 PM

My husband was 'diagnosed' with scleroderma as a side effect to his GVHD following a Stem Cell Transplant.

I'm not sure what to think of it. No specific tests have been carried out to diagnose it and I suspect you here may have a better idea than a lot of doctors out there!

It started about a year ago with swollen ankles and fingers.

 

  • Thickened skin started and has lead to limited joint movement - he can't climb stairs - though this may be due to muscle atrophy in his pelvis, his ankles have virtually no range of movement, he can't lift his arms above his chest.
  •  
  • His lower legs are worst - shiny and no hair, very itchy and he suffers nerve pain. He has a lesion on one leg that is very tender and looks red and yellowish in parts and scabby.
  • He has patches of discoloured skin on his back, chest and wrists.

I'm terrified he's basically going to seize up, please help!



#10 Joelf

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Posted 10 December 2014 - 11:18 AM

Hi Chip,

 

I'm sorry that your husband is suffering so much with skin involvement and I would suggest (if he hasn't already) that you try to get a referral to a Scleroderma expert to enable him to get the specialist help and advice he needs.

 

Kind regards,


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#11 Amanda Thorpe

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Posted 13 December 2014 - 12:41 AM

Hello Chip

 

At the point of diagnosis I had about 60-70% tight skin. I had no movement in the joints in my toes, ankle, wrists and fingers. In my elbows, knees and shoulders I had some movement but, like your husband, could not lift my arms about my head, neither could I straighten out my arms. Only my hips were unaffected!

 

Thanks to mycophenolate (I think!) I had skin loosening and now I have tight skin from the knee down and from halfway down the forearm. It means that I have sclerodactyly (it's my hands in the video) restricted movement of the wrist joint. I have limited movement of the ankle joint and toe joints, the skin on my calves is tight, shiny and hairless. After 7 years of tight skin I have neuropathy and foot ulcers where the skin is tight, who knows whether it will ever loosen.

 

As Jo has suggested, referral to a scleroderma expert could be beneficial, I don't know if your husband could take any sort of immunosuppressants now but that's what's used to reverse the effects to the skin. Mind you, scleroderma can wax and wane so it is possible that it could soften with time, 7 years on and I'm still waiting for reversal of my remaining areas of tight skin. 

 

It there's one thing I know about scleroderma, it's that anything is possible and if there's one thing I know about people with scleroderma, it's that we're capable of anything as are our relatives!

 

Take care.


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