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Anyone have experience with Gleevec?

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#1 aniwallar


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Posted 22 August 2009 - 10:08 PM

Hello to all:

Last time I saw my Rheumatologist he told me about a medication called Gleevec.
I was diagnosed with systemic sclerosis about 5 years ago. I was doing fine until last year my tests started to show some Pulmonary Hypertension and also Pulmonary Fibrosis. I have not started any treatment because I was moving from Korea to Romania. I will be going to Germany to see a Rheumatologist there and I wanted to know if anyone is taking Gleevec.
I read somewhere that it does not help people with Systemic Sclerosis.

Thanks for your help,


#2 Amanda Thorpe

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Posted 23 August 2009 - 04:00 AM

Hello Ani

I am sorry you are having problems with your lungs and heart after doing so well for so long. There are plenty of others on this forum with pulmonary fibrosis and/or pulmonary hypertension and hopefully they will also chime in. I see that you have not started any treatment for either and would urge you to do so because the sooner you can begin to arrest the damage being done the better for you.

Take care.

Amanda Thorpe
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#3 Gidget


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Posted 23 August 2009 - 02:20 PM

I have been on Gleevec for over a year now.
I initially received the drug as part of a clinical trial out of NYC with Hospital of Special Surgery. I am now in the follow up trial. The clinical trial is getting ready to publish their results for October and the doctors have told me unofficially that the drug has been promising. As I have lung issues and some skin hardening, my main hope was that it would work effectively for my lungs. After a year of the drug, my skin score went from a 21 to an 11 -- so I think it worked marvelously for that. As far as my lungs -- well they have remained relatively the same although they have drifted slightly downward in the year. What I have heard from the clinical trial is that of the 10 that completed the trial almost all the participants lung function remained the same and that a 2 of the participants had a significant improvement in their lung function. As a side note, the Mayo Clinic in MN did a study on Gleevec for pulmunary fibrosis on 400 patients and the results of their study showed "no significant change in lung function". When I brought this up to the clinical trial doctors in NYC, they indicated that they felt that the pulmunary fibrosis was caused by sclero and therefore it was not the same study. As far as side effects for Gleevec -- I had alot of nauseau initially and felt very worn out -- so I started to taking the dosage throughout the day on a full stomach and that help quite a lot. Also, while on Gleevec, I have less joint pain and I feel less arthritic. It takes a few months for your body to get use to Gleevec. I initially did not feel good on the drug. My only other comment is that the drug here in the USA runs about $3000-$4000 per month -- hence the reason I continue in the clinical study as there is no way any insurance company will cover this drug,. Also, some others have tried the clinical trial and had very poor luck with Gleevec in that it made them very sick. I think if you search Gleevec on the forum you will see some other experiences. Good luck. Let me know if you have any questions. Gidget.