imbruvica tendonitis

[agatha123]

i have been 1 year on Imbruvica.I amgettinvg tendonitis too often: wrists, knees,ankles.Anyone experiencing that?

[Hidden]

i have it-mine rotates spots

[agatha123 in reply to Hidden]

I suspected it was related to the med.

Thanks

[Ginajetta]

I have been in embruvica for about 15 months, had roving joint/tendon pain. Has settled in hip some days better. But i have achy joints and tendons on and off. Past month more achy than usual.

[morepork]

Hi Agatha

I can also relate to that - roving pain and weakness in most of my joints and tendons.

The pain seems worse since going back on Ibrutinb. Currently having issues with combing my hair, pushing open heavy doors or using the computer mouse for too long.

[Lenny123]

Yes, miserable, seems worth it though. lots of hydration, ask provider about Ibuprofen or similar. seems to work best taken early. Ice packs to area.

Hang in there , seems to get less troublesome with time.

[Jooby59]

Yes! It hurts to lift my arms to wash my hair, my right ankle/heel is painful & inflamed and, bizarrely, today my lower forearm feels like it’s been hit with a hammer 😂

I was told Ibuprofen was a definite no no and consultant gave me codeine.

Still, I always think these side effects are a small price to pay for such a fantastic tablet.

[sllincolorado]

Apologies for sounding like a broken record but if you are in a country where it is available, and if it is not an additional financial burden, you might want to ask your doc about acalabrutinib/calquence. I could barely walk on ibrutinib. I realize I had an extreme reaction and most people do well and have minimal issues with ibrutinib. I also realize that for those of you doing very well with your numbers on ibrutinib you may prefer to stay with what is working and manage the side effects. Just glad we have increasingly more choices so we can figure out what works best for each of us.

Early best wishes for a happy and healthy new decade.

[BluMts in reply to sllincolorado]

Did your pains go away or get better on changing to Acalabrutinib? I think that's what you inferred, but you did not say so?

[sllincolorado in reply to BluMts]

Sorry for not clarifying. Pain went away completely once I stopped ibrutinib and started acalabrutinib. I think it took less than a week. No more bone pain or cramping. I have a few minor mouth blisters. I feel very good. I have been on acalabrutinib for about 18 months. Had blood tests and doc visit a few weeks ago and all numbers are in normal range.

[BluMts in reply to sllincolorado]

Thanks

[Tom27]

This is my first response to a post. Yes, I have significant pain in both wrists that started upon my taking Imbruvica. This is the biggest side effect I have had. While the daily tablet has helped tremendously, the pain in my thumbs and wrist keep me from doing some normal activities or make common actions very painful. Acupuncture has helped some. Tylenol has helped some. A hand/wrist brace is the most helpful. I would love to see if anyone has any other suggestions.

Tom in California

[BluMts in reply to Tom27]

I not sure I understand what you mean by the the daily tablet helping. Was this a dose reduction to one instead of three capsules or did you go on the new IB one tablet at full dose? Would be grateful for your reply.

[Tom27 in reply to BluMts]

I take 1 Imbruvica 420mg per day.

[BluMts in reply to Tom27]

Thank you for taking the time to reply Tom.

I understand that you've found the one tablet of IB 420mg gives less side effects than the 3 capsules amounting to 420mg.

[sheilamarie]

I have had knee pain, first in one knee but that's fine now, and now in the other knee. Tylenol for Arthritis seems to help. I thought the pain during some activities in my right thumb was due to a heavy knitting day but perhaps it's ibrutinib? I will see a orthopedic PA soon about the thumb. I've been in CLL remission for 3 months and my hematologist/oncologist suggested I could go on a ibrutinib "holiday" but I've been reluctant to do that just yet. He was not pleased when I told him I had decreased the dosage from 420mg to 280mg January 2019, cautious when I told him I decreased it further to 140mg in May, but okay with these decisions, and now suggesting a "holiday." I guess I was so surprised I didn't follow up with him re consequences etc for that change of mind. I will do so when we next speak. I began treatment in June 2018.

[livinglifewell in reply to sheilamarie]

Why would you reduce your dose without discussing it with your prescriber? I'm just really curious as to what led you to make that decision.

[sheilamarie in reply to livinglifewell]

The idea that the same dosage of ibrutinib (or any drug) is used for people of all sizes just doesn't make sense to me. After being on ibrutinib for 5 months, I experienced skin and nail issues. I read comments from folks on this site that they changed their dosage so I felt I wasn't alone. I have great appreciation for these bodies of ours; I believe if we provide the nutrients etc they need, they will try to heal themselves, as they have done for most of our lives. Of course, I'm grateful for the meds that are available should the aforementioned fail. With monthly blood tests, I monitor my numbers. I come from a thinking medical family, taught biology, so perhaps that helps too. Thank you livinglifewell for the question - hope I've answered it to your satisfaction.

[livinglifewell in reply to sheilamarie]

I think I understand your desire and reasons to change the dose, what I don't get is your decision to make the change without consultation or notification beforehand with your specialist. I totally appreciate owning our disease and our treatment choices, but I guess I'm confounded by the approach. I've gone on some different paths myself in choosing approaches that didn't jive with my physician's, but I always got their "nod" before I ventured down that path. I wanted us to be on the same page and have the doc vested in my care.

[sheilamarie in reply to livinglifewell]

I believed he wouldn't agree with my decision.

[livinglifewell]

Oh, yeah, greater trochanter bursistis bilateral. It's awful. It got so bad I saw a physiatrist and she injected steroids and lidocaine directly into the bursa (on fire) for almost immediate relief. It's lasted several months so far with mild flares ups. It doesn't prevent me from walking or sleeping like it has in the past.

[Hidden]

Yes - it roves as others said to weak spots in my body. By that I mean my left elbow (from playing guitar), my hands (from years of computer work), etc.