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Gleevec (Not useful for scleroderma)

gleevec disproven treatments birth defects

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8 replies to this topic

#1 virg121



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Posted 12 March 2008 - 01:15 PM

Hello there, my daughter has systemic sclerosis she is currently taking methotrexate and folic acid along with amlodipine. We saw her doctor yesterday and it seems she wants to start her on Gleevec, she thinks this would be better for her, the only thing is that our insurance won't cover and from what I understand, its pretty expensive. So, I would like to know if anyone out there is taking this med, and did your insurance cover it, or how can I go about getting this. Please help.


#2 Gidget


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Posted 12 March 2008 - 03:04 PM

There are several clinical trials with Gleevec. I am enrolled to begin the one at Hospital of Special Surgery in NYC but I believe that Stanford, Northwestern, Johns Hopkins and UCLA are also running clinical trials. The trials are all slightly different and maybe an option. I was told that if I wanted Gleevec after the clinical trial, the cost would be $35,000 a year for the medicine. Good Luck. Gidget

#3 janey


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Posted 12 March 2008 - 04:29 PM

Sorry to hear about your daughter. Has she seen any results from the methotrexate? That's the drug I was first started with. It did wonders for me but it take about 3 months before I started seeing any changes. I haven't taken Gleevec, but as Gidget mentioned there are several clinical trials with Gleevac for scleroderma. The link will take you to a list of several of these trials. Maybe you should talk to her doctor about these. It might be the way to go.

I hope things work out for your daughter and she gets a treatment that works for her.

Big Hugs to you both,

Janey Willis
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#4 oddone


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Posted 23 March 2008 - 04:48 AM

My husband may be participating in a clinical trial for Gleevec. We should be receiving information concerning the trial in 3-4 weeks.
Are there any sclero's on this forum currently on this study?
The big hesitation for my husband are side effects.
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#5 Gidget


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Posted 23 March 2008 - 05:28 AM

Expecting to start the Gleevec clinical trial on Mar. 29th. Was also concerned about side effects and if I would be able to function or if I would just be curled up in a ball on the couch for the next year. Dr. basically told me to expect water retention (they can give me a pill for this) and muscle achiness. Dr. will adjust Gleevec dosage amount if I become too uncomfortable and I can take drugs for the muscle aches. So for me it is a go -- as long as I am not curled up in a ball on the couch. The hiccup for me is that I am on warfarin for my port-a-cath and Gleevec and the warfarin may throw off my body chemistry -- so I have to have blood work done every 2 weeks to see what is happening. I have had the initial PFT, chest Xray and echo and Friday they will do the skin biopsy (hope that doesn't hurt too much) and then that is it. I have to take 4 Gleevec pills a day and once the study is done, if I still want Gleevec, it will cost $35,000 per year for the drug. Oh and one more thing -- before I agreed to the study, I made good and sure that my lungs were stable. Had OK from pulmonologist and rheumatologist that lungs stable. If my lungs were not stable, I would be headed to a stem cell at Northwestern. As a side note, I did confirm with Northwestern that the Gleevec would not eliminate me from their Stem Cell clinical trial. So, if my lungs do go south at least I am keeping that option open. Good Luck. Gidget.

#6 Lucy


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Posted 26 March 2008 - 12:01 PM

I am a new member who is diagnosed with Diffused SD 2006 but had severe outward symptoms for one year prior. I have qualified for the Gleevec study. I am awaiting the phone call that the study has begun and to come and get the drug, few technical delays. The study I will be involved in is only for 6 months. All that I have read the side effects should be very limited, (less than many other drugs I have been on) however my Rheumatologist's concern is that when the drug stops the disease comes back. Have any of you had this discussion with your doctor? Has anyone started the drug?
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#7 jpgoogs722



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Posted 27 November 2015 - 02:47 PM

Hi All,
Like Yaya, I am debating on going through with taking this prescription. After reading everyone's experience a lot of my questions have been answered except ONE major question ..... Can this drug cause birth defects? Is it safe to try to concieve after you have been on Gleevac for a certain time period?

#8 Joelf


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Posted 27 November 2015 - 11:02 PM

Hi Jpgoogs,


Welcome to these forums!


I've included a link to our page on  Scleroderma Clinical Trials: Completed, Negative Results as Gleevec trials for scleroderma were discontinued in 2012 because it was not shown to be useful and there were adverse side effects.


I've also found some information on Gleevac which does state that the drug should not be taken whilst pregnant, as it could harm the unborn baby.


Kind regards,

Jo Frowde
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#9 Shelley Ensz

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Posted 03 December 2015 - 04:17 PM

Hi Jpgoogs,


If your doctor has prescribed Gleevec for something other than scleroderma (such as leukemia or gastrointestinal tumors), be sure to discuss any plans you may have regarding pregnancy. 


If they were recommending it for scleroderma, then you might want to get a second opinion, preferably with a listed scleroderma expert, which we strongly recommend.


Please keep in touch and let us know how things are going for you.



Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.