fragiledancer2

Gleevec anyone?

5 posts in this topic

I have had diffuse scleroderma for almost a decade now and have been on and off CellCept several times. I would like to hear if anyone has been put on Gleevec for pulmonary fibrosis by their rheumatologist but not as part of a clinical trial, and what your experience has been in terms of side effects and improvement. Thanks, Shirl

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Shirl,

I hope the cellcept has some effect in slowing the progress of your fibrosis. I'm assuming that since you've been off and on it, that you aren't handling the side effects very well. I've been on cellcept for a couple of years and have never had any personal experience with Gleevec, so I can't answer your question from a personal perspective.

Based on what I can find here at ISN and other reliable medical source, it looks like Gleevec is still in the clinical trial stage for scleroderma associated pulmonary fibrosis, in fact, it looks like a phase II trial. Please see the clinical trial page for Gleevec.

 

(Webmaster Update: Gleevec trials for scleroderma were discontinued because it was not shown to be useful and there were adverse side effects.)

Hope this hope somewhat.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Shirl,

I just finished a clinical trial where I was taking 400mg of Gleevec. It did wonders for the skin. According to the study, my skin score went from a 21 to 10 in a year. I think throughout the year, my PFTs went up and down, however for the study purposes, my PFT at the end of the study was the same or slightly better than at the beginning of the study -- so from the study perspective, that was a good thing -- from my perspective, I wish it had been significantly better.

 

The Mayo clinic in MN did a study of 400mg on Gleevec on pulmonary fibrosis. The unofficial results was that there was no statistically significant change between the participants in the study -- and I think it was a large study group.

 

I had a hard time taking all 4 Gleevec pills at the same time as I was nauseous and a couch potato. It was much better once I split the dosage up into 200 mg at lunch and 200 mg at dinner.

 

For now, since coming off the study, I have been on colchicine. Everyone says colchicine does not work but a lung transplant doctor told me that he has seen it work on patients waiting for a lung. He doesn't know why it works for some and not for others. For me, I like it as it is like taking nothing, i.e. no side effects, and makes me feel like I am doing something.

Good Luck. Gidget

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Shirl,

As far as I know, Gleevec is only on a trial basis for SSc. I tried it for six weeks but finally had to stop due to severe fluid retention, rib pain and lethargy. still, I know some others have had good results on it, so it may be worth trying, depending on your individual symptoms. Good luck.

 

 

(Webmaster Update: Gleevec trials for scleroderma were discontinued because it was not shown to be useful and there were adverse side effects.)


best,
cemile

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Funny, just went to my rheumatologist and she mentioned this drug too. Said it was still in clinicals, but there was a glimmer of hope that it may be beneficial in treating the fibrosis and that it would be another 2 years or so. She wants to try me on it.

 

Michelle

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