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After Stem Cell does Raynaud's get better?


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#1 ozzy69

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Posted 09 December 2008 - 04:32 AM

Hi,

Anyone whom has had the stem cell, does the Raynaud's improve or go away? My husband and I were just wondering.

Thanks
Nina Lynn

#2 scragporter

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Posted 09 December 2008 - 07:39 AM

Hi Nina,
Sharons fingers already feel warmer and Lisa aka Peanut her Raynaud's went away. I will ask Dr Burt for you on what results he has found.
Cheers Craig

#3 ozzy69

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Posted 09 December 2008 - 09:23 AM

Craig,

Thanks so much for the information. My husband has noticed my Raynaud's has gotten worse. They seem to be purple all the time and when they are not they are red swollen. I never have asked if the Raynaud's get better after stem cell. It would be so nice not to have the Raynaud's!

Thanks again! Hope Sharon is doing great! Give her lots of hugs for us!

Nina Lynn

#4 CraigR

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Posted 09 December 2008 - 10:24 AM

I had a stem cell transplant in January, 2003. It was the autologous type (where they give you back your own cells), which I believe is the type done for scleroderma. Mine was for lymphoma, however, not scleroderma.

I don't have the diffuse type, but rather the "CREST" (CRST) type (since 1977), with Raynaud's and some lung involvement, fatigue, and secondary Sjogren's as the main symptoms.

For a while afterward the Raynaud's seemed less intense. However, about 9 or 10 months after the transplant I had the worst Raynaud's attacks ever. All my fingers were bandaged. I found some relief with Adalat (calcium channel blocker) and Prazosin (alpha blocker). It has since relented, and my Raynaud's is no longer severe enough to require medication.

Craig R

#5 GocartMoz

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Posted 09 December 2008 - 11:24 AM

Hi Ozzy,

My experience has been that the stem cell transplant has not improved my Raynaud's, despite improving just about everything else. Frankly though, Raynaud's, though present, has never been a huge issue for me as I live in Florida. However, I still do get attacks from time to time. Good luck with everything.

#6 scragporter

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Posted 09 December 2008 - 01:20 PM

Hi Ozzy,
Sharons doing well thanks still awaiting counts to come up so we can escape the BMT unit. I asked Dr Burt and he said ~sometimes (rarely) it goes away but usually it does not. It seems to help everything else.
All the best Craig

#7 ozzy69

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Posted 09 December 2008 - 02:16 PM

Thanks everyone so much for your responses. My Raynaud's is starting to really bother me. It does not matter if it is winter or summer, I stay purple. I have tried three different meds, and nothing has worked. Gloves and wool socks don't help much because they just stay cold in them. If I put a lot of clothes on, then I get hot and start sweating and that makes me feel sick to my stomach. It amazes me that I can get so hot and still have cold purple hands. When my hands do get warm , they are hot and hurt, it seems like there is no winning. I am either hot or cold, there is no in between. Every night I wake up with night sweats, and then I get really cold.. I guess I prefer the cold then the hot.

Again, thanks everyone for your responses. I am having my lung function and CT scans tomorrow. It has been about four months since they checked them.

Hugs everyone,
Nina Lynn

#8 PrincessB

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Posted 09 December 2008 - 09:51 PM

Ozzy,

I had my stem cell transplant in September last year and last winter the Raynaud's did seem to be better. This year though it seems to be pretty bad again. BUT my fingers are less swollen than they were, I am back wearing my rings again, although they're a bit tighter than pre-everything.

Have you tried mittens? They are great because they're a pocket of warm air around your fingers and there's also friction between your fingers to warm them up. Gloves don't work for me either. My mum has just bought me a new woolly pair with fleece inside, can't wait to get home for holiday to have them.

B
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)