After going off 420 mg Imb for 2 weeks my previous wbc was at 223,00 down from 290,000 but I was experiencing severe muscle / back pain. My onc/hemo suggested stopping for two weeks and then going on to a lower dosage 280 mg
Went to see her last Friday and my wbc was at 40,000. Started back on the lower dosage and within 6 hours I started to feel muscle and back pain setting in.
My gp gave me a shot of B12 and put me on iron tabs to deal with my anemia - 9.2
My chiropractor was not at all successful in relieving any pain, though he wants to do acupuncture tomorrow afternoon, maybe that will help.
I’m very discouraged and down not sure what to do to get myself up and running. Getting out of bed is such an effort it comes down to how much pain I want to go through to stand up & walk.
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2tas
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I have to say that the whole reason I initially got onto a lower dose of ibrutinib was due to disabling back muscle spasm, which developed a couple of weeks after I started ibrutinib. It could have been unrelated of course. But I have never experienced anything like that in my life before or since. I was in great pain for 3 months. Could barely walk. Was seeing physiotherapist. So it interests me to see that someone else here has a possible correlation between back muscle pain and ibrutinib. I have been on one pill a day for a long time, and it does seem to be managing my CLL completely, based on good blood count numbers and no lymphoma b symptoms (whereas before I was very cytopenic and had all the usual lymphoma b symptoms). Good luck to you!
2tas, the fact that your pain went away while off ibrutinib and came back shortly after you restarted sure does make it sound like a good portion of your pain is an ibrutinib side effect.
I am linking you to a discussion below I had read earlier when I was getting on ibrutinib. What I gather from the discussion is that they while they have some theories, they are not really sure why ibrutinib has this side effect, nor do they know how stop it, short of reducing the dose.
I am no doctor, but it would seem to me your options include reducing the dose to 140 mg to see if that helps; staying the course and see if it resolves or if the pain can be managed with other therapies like acupuncture; or switching to another btk inhibitor like acalabrutininb.
One of the doctors in the panel discussion below offers his opinion that side effects can vary from one btk inhibitor to the next and they are not always sure why.
Of course I guess yet another option would be to switch to venetoclax. But since the btk inhibitor you are one is working so well, other than the side effect, I might consider reducing the dose once more or seeing if you can get one of the other btk drugs first.
You can see in the article below its a perplexing problem even for the experts. It sounds like Dr Keating thinks 140 mg can be effective and it might be worth going down on the dose one more time.
Very interesting video. Thank you for sharing, jeff. And yes, Dr. Keating does seem to be saying that lower dose is worth exploring and may be fully effective.
2tas, does your CLL hemotology/oncologist Dr. attribute your anemia to low iron? There are several causes for anemia besides iron levels.
If it is low iron, and the Dr. did not give you a prescription ferritin, know that the over-the-counter iron pills are not all the best remedy. I found Ferrous Sulfate (Feosol) worked best for me in bringing my low iron up to normal.
Also, spasms can be from poor circulation, low magnesium, low potassium. You can ask ask to have those levels tested also.
Do not wait for your next appointment to call your hemo/onco and relate your situation.
Lowering my ibrutinib did NOT lessen my muscle & joint pain, tried for two or three weeks and there was no change, so I went back up to the full dose. I use acupuncture and Reiki weekly to help me deal with the discomfort, cannabis lotion and other products. It is a challenge to put it mildly.
So sorry to hear about your pain issues. Acupuncture may help. I was getting acupuncture regularly until my insurance stopped paying for it. ( Alas, I can't afford the high cost of regular treatments.) But I was getting treated for energy, not for pain. Note that acupuncture does not produce immediate results. I'd recommend a few weeks of treatment before making a decision about how well it works. I wish oncologists in general knew more about the realities of living with CLL and the effects of treatment. All the best to you, 2tas.
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