Hello all....I have been on the 400 mg gleevec without any glucocorticoid support for a week now....the side effects are impressive. From swelling to joint pain, night sweats, GERD, POTS, heavy feeling in calves ( that comes with the POTS), etc. I know that you all know about them....
Do they get better and about what time frame?
I am so grateful for this forum and the support you all give to so many questions from new patients like myself....
Hi Susan,
400mg ... so you’re on imatinib. How long have you been taking it?
I can talk to GERD quite well, as I have a bit of a history with that. Imatinib on an empty stomach is a recipe for an upset tummy. I no longer take imatinib, but when I did I found the only way to reduce GERD was to take it during my meal. It really helped, but didn’t eliminate it.
Imatinib is the only TKI that is tolerant of reduced stomach acid. So you could get some omeprazone (over the counter, no script needed) which will reduce or eliminate GERD. This isn’t so possible with other TKIs because they need an acidic environment.
David.
Hi Susan, 11 years down the line I still remember the night sweats and bone pain well after starting imatinib 400mg. They declined over 2-3 months to a level where they didn't impact my daily life significantly. I used paracetomol a few times, which is not recommended because of the load on the liver from the TKI, but I had to do something. Given your gastric issues I'd definitely suggest you stay away from ibuprofen and other non-steroidals. Hot showers/baths helped, with gentle exercise (walking/swimming) and stretching. A year later I was back playing inter-club league tennis. Now I'm 9 months in to a reduction to 200mg, still PCRU, and in 3 months I hope to stop taking the meds, with a 72% chance of TFR as per the paper David put on the forum this week.
Oh my goodness....the side effects. It was a lot easier with the steroids but my stomach was a mess. I even get depression on the gleevec. I take it at night with supper and I awaken with the worst feelings that linger until about 4:30 in the afternoon. What in the world...I did measure my trough level and 24 hours after taking the gleevec I am 1658 ng/ml.
