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Side effects or something else ?

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#1 snowbear


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Posted 17 August 2015 - 09:47 AM

I am trying to figure out if my symptoms are from Inflammatory Arthritis (Lupus like syndrome) or a side effect of the Gleevec which I have been taking since 12/30/2014. 


Prior to being diagnosed with CML, I was taking low dose methotrexate which resolved the joint pain but I still had synovial swelling and tendonitis (which became very severe at one point).  I have since been taken off of the methotrexate, but remain on Plaquneil & 30 mg Cymbalta (down from 60 mg).  The joint pain first returned in my hands and wrists, but has gradually spread to my feet and ankles with flare ups in my larger joints.  I also run low grade fevers and get flushing and/or rashes when over exposed to heat or light.


My Hema/Onc has given me the go ahead to treat the autoimmune issues with a stronger medication as long as it's NOT methotrexate (because it can cause other bone marrow problems long term).  Arava & Rituxan are my other options which my rheumy has considered before.   My SED rate spiked a few months ago when I began walking again, but came back down with extra rest and limited activity then started creeping back up. I've also gained 12 lbs since then.  Ugh!


I don't know what to do.  I need more pain relief, but if the pain is caused by the Gleevec, then I don't want to be taking any more toxic meds.  However, I don't think the fevers and feeling unwell after exertion or exposure to heat/light can be blamed on the Gleevec.


I take Aleve & Tyelnol nearly every day, hot showers, ice packs, Rx pain creams, limit activity and increase rest, but it's still not enough and I'm just tired of hurting all the time.

#2 Trey


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Posted 17 August 2015 - 04:57 PM

Gleevec is considered an anti-rheumatic, but that does not mean it will help everyone by relieving joint pain.  But I doubt it makes RA symptoms any worse.  Whether it makes the skin issues worse is another matter, and it probably does.




Most RA prescription medications are anti-inflammatory drugs, meaning they suppress the immune system.  That is not normally what you would want along with TKI drugs except to a smaller degree.  But if you need one, you could try it.


Stopping exercise due to SED rate increase seems to be counter-productive to me.  Personally, I would keep exercising.  Overall benefits for RA would seem to outweigh any potential negatives as shown by SED rate, which in isolation does not reveal what is actually happening in the joints. 

#3 Gail's


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Posted 19 August 2015 - 11:49 PM

I was so impressed with how my mom responded to rituxin for B cell lymphoma and am surprised that it's useful in RA. I read about it on one of the cancer sites and would love to know why it works for RA.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#4 Trey


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Posted 20 August 2015 - 01:26 PM

Rituxan suppresses the lymphoid WBCs (including B-cells), which decreases immune responses.  In doing so it decreases lymphoid cell activity in autoimmune disorders such as RA.  So it is sort of a very powerful NSAID.


Gleevec inhibits the kinase c-Kit and by doing so helps with RA.  So a different mechanism.

Edited by Trey, 20 August 2015 - 01:28 PM.

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