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Biomarker for Diffuse Scleroderma skin has been discovered!


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Trial for Dasatinib


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#1 Angel Sky

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Posted 12 August 2009 - 04:46 AM

Hi:

Just heard from my Sclero doctor in Charleston regarding Clinical Trials on Dasatinib. Looks like I don't qualify afterall. My skin is just not bad enough!!! :) It was recommended that I go on Cellcept for my lung involvement. Anybody currently on that? I will have to wait two weeks or so to go on it as I'm having my Thyroid removed on Friday.

Take care.

Angel Sky

#2 Jeannie McClelland

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Posted 12 August 2009 - 04:55 AM

Hi Angel Sky,

Welcome to the Forum! How do you like it so far? I hope you are making lots of new friends here.

I'm on CellCept, and have been for a couple of years now. I've done well on it and haven't noticed any major side effects. The 'downside' of it is needing frequent blood tests to check that it's not causing too much immunosuppression, but that's not a big deal. It's just gone on the market as a generic, so that's an 'upside'.

Good luck!
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#3 janey

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Posted 12 August 2009 - 05:55 AM

Angel,
I would say that's a good thing that you don't quality due to lack of skin tightening. I guess one of the measures of the drug's effectiveness will be skin fibrosis.

I've been on cellcept for 2.5 years and so far so good. I can't say that I've had any side effects but as to whether or not it has stopped my lung problem, we'll know in a few weeks. I'm currently going through the regimen of lung testing to see how I'm doing compared to 2 years ago. Fun fun - HRCT, pft, ECHO, 6 minute walk, nocturnal O2 - all that time consuming fun stuff. I'll post the results once I get them all.

I hope cellcept works for you.

Big Hugs,
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#4 alice1

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Posted 12 August 2009 - 10:17 AM

I just went off Cellcept after 6 years. I think it has kept me from having major organ damage but I do have digestive tract problems. In my early stages every time my doctor tried to reduce the Cellcept the SSc came back within 6 wks. so I know it worked for me. We are keeping our finger crossed. Good luck to you.....alice1

#5 Angel Sky

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Posted 13 August 2009 - 05:21 AM

Hi Alice1, et al:Thanks for the info on Cellcept!!

Alice1 did you have digestive problems before the Cellcept? I'm just wondering because I have almost constant diarrhea and weight loss.

The stomach problems have been happening for years, but the past 6 months it has been much worse, so much so that I take antidiarrheal tablets twice a day. I guess I should buy stock in the company! :lol:

Thanks so much for any further info!!!

Angel Sky

#6 Amanda Thorpe

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Posted 13 August 2009 - 09:27 AM

Hello Angelsky

I was on Cellcept (mycophenolate mofitel) for 10 months with no side effects then I developed frequent and severe headaches so I switched to methotrexate. All in all I was on Cellcept for a year and I am certain it was working well and would have stayed on it if not for the intolerable side effect. I still developed gastro-intestinal issues and changes to my heart on the Cellcept but no lung or kidney problems.

I hope you do well on Cellcept and am glad your skin involvement is not as bad as it could be. My skin involvement is better now and I was remembering today how I used to walk like Frankenstein's Bride I was so stiff! :lol:

Take care.
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#7 Deb1million

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Posted 13 August 2009 - 11:17 AM

hi Angelsky
First, Id like to wish you well for your thyroid opoeration tomorrow. I hope you are home soon after with no ill-effects.

I have been on Cellcept and Plaquenil for 8 months, and have noticed major improvements in my breathing ability and eneregy levels, with no unwanted side effects. Im waiting to see my renal specialist as I have stage 3 kidney failure, but that staretd before the diffuse sclero. Im hoping the drugs have helped my kidneys too.
I hope it works well for you if you decide to start cellcept.
best wishes
Debbie

#8 Sheryl

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Posted 14 August 2009 - 01:56 AM

Angel Sky,
I hope all went well with your surgery today. When you feel up to it let all of us know that you survived another ordeal. I have been thinking about you and hope you bounce back quickly. Keep in touch.
Strength and Warmth,
Sheryl

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#9 Kamlesh

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Posted 14 August 2009 - 04:46 PM

Hi Angel Sky,

I took Cellcept for over two years, 3000 mg dose.
It worked for me to put my Scleroderma in remission and stabilize my lungs.
Kind regards,

Kamlesh


#10 alice1

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Posted 15 August 2009 - 08:12 AM

Angel Sky...yes I had those type of problems and still do except my diarrhea has gone to constipation but nuts helps that too. I have no appetite and just lost 6 lbs. without even realizing it. So I'm setting here
stuffing my mouth because I have to go to the doctor in Sept. and he fusses at me and my husband when I lose below a 125lbs.

Cellcept...he took me off Cellcept thinking I was ready and that it may help
my stomach but I didn't help my stomach and I wasn't ready. I had to go back on it yesterday because my lower calfs started hurting but I still feel great compared to the first few years and I hope you will to.

alice