Two years after stopping Ibrutinib muscle pains getting worse

[romarin]

Two years ago I stopped Flair trial of Ibrutinib and Rituximab and have been doing pretty well since then. However in the last few weeks I have developed muscle pain in my arm (heavy shopping) and now my thigh - due to swimming weirdly to avoid pain in my hip...anyway the pains have continued and even painkillers- paracetamol and Ibuprofen don't seem to work. I am assuming this is CLL related. I stopped the trial due to severe muscle and joint pain-(see previous posts) so maybe that was the CLL as much as reaction to the medication. I have just had MRI scan of the hip - xray did not indicate urgent treatment. But physiotherapy exercises caused more pain! So again perhaps the hip pain is CLL related. I know nobody knows the answer to all this but any shared experiences or advice always appreciated!

[Hidden]

romarin,

Do you suffer fatigue issues? I have found myself the last month having sore muscles, arms, legs from doing regular things. I think it is because my physical activity has been so low, specially the last 6 months.

Last couple weeks (after almost dying from pain after going waterskiing.....very close call) I force myself to go do physical exercise at least 15 min a day...stack wood, mow my lawn...something. My muscles still hurt after but I am hopeful they will heal and get stronger.

Doing little physical exercise is not enough (Renee and I walk about 1 mile a day). You might need to add some strenuous physical exercise for 15 min or so every day.

Scott

[Jm954 Administrator]

All this joint and muscle pain may not be CLL related at all but just the usual problems us older people aquire.

I think Ibrutinib finds every little weakness in us and brings it out into the open big time - for me it was hypertension when I had been borderline hypertensive for years, for you joint and muscle pain, for others heart issues such as AF.

I also had terrible joint and muscle pains on Ibrutinib, some days I couldn't function or pick up a cup but I can be unbelievable stubborn and I kept going with it and now have no pain at all.

Co-incidentally, you and I started in FLAIR the same month and with similar wbc, marrow etc.

I can't help with advice re the muscle pain except to endorse what Hidden has said and say that exercise can help. I wish you well.

[Hidden]

Have you ever looked into your diet? I’ve suffered many aches and pains over the years plus mental fatigue and after doing an elimination diet realised many of my issues were either stress related or food intolerances.

Have a look at an anti inflammatory diet.

Stuart

[Hidden in reply to Hidden]

Stuart,

I went the opposite of you, and I know some people don't agree. But after hearing Leukemia I figured I can eat anything I want now under the whole "Whats it gonna do, give me cancer?" type thinking.

Before LoooKemia Renee and I always tried to eat healthy...not complicated as neither of us like to cook, but healthy. I still try to eat mostly healthy, but a few times a week end up having a TV dinner or can of soup type meal. I can't say I noticed any difference whatsoever in how I feel....but my Cholesterol which was not high, but high normal, is much lower at last test. Go figure.

If I had the resources I would have a cook and all fresh food, cooked to order...but still...I am not sure it would make me feel different...well, other than less stress about the whole eating thing. I find eating a whole negative to evolution (I say again, I am not disputing evolution, I totally agree...I just think there is more to it). If you think about it...those of us who had to eat less would survive better, be better able to procreate and thus pass along our eating less genes....

Scott

I suspect I am suffering from Devolution...always going the wrong way it seems

[wmay13241]

My wife (aggressive follicular lymphoma) took Ibrutinib for 15 months ending in 2014 - it gave her horrible leg cramps that continue to this day.

[winterwild in reply to wmay13241]

I have also suffered from really bad muscle cramps throughout my different treatments and I have also found magnesium oil to be very affective. It is absorbed through the skin quicker than tablets. The oil can be sprayed on the soles of the feet, behind the knees or I use it as a deodorant under my arms. Some people don’t like the feel of the oil so a good quality tablet can be taken, or magnesium flakes can be added to a bath.

[livinglifewell]

I complained of the muscle pain to my onc a while back and he recommended magnesium. He said that for some unknown reason, cancer uses up the magnesium, not enough to register in our lab values, but since I've been rubbing magnesium infused cream/lotion into my muscles, the pain has lessened considerably. I purchased the infused lotion online.

[romarin]

Many many thanks for all the sympathy and advice. Here is what I have figured out. My pains are not mysterious I can work out what caused them. Thus I think that maybe the pain results from my immune system being unable to control it. Even on Ibrutinib it was perhaps the CLL that made the pain caused by the medication hard to cope with. This means it makes sense that some people eventually get over the pain on Ibrutinib because their immune system is strengthened by the treatment.

So my current pain in elbow and leg I know the causes, - awkward swimming movement, cradling heavy shopping- (in both cases trying to avoid stress...) but my immune system can’t cope. My hip pain which has been recurring for years, this time has not gone away, because again my immune system can’t cope with it any more. X rays show some damage to the hip but not enough to warrant a replacement as yet. Last time I saw the consultant we reckoned it would be better to have the hip done before more treatment. Now I wonder if it should be the other way round, I need CLL treatment before a hip op because my immune system would not be able to cope with it.

I take magnesium tablets (the science says you can’t absorb magnesium through the skin) I do moderate exercise every day- but this has caused my pain! ...I am aware of my diet though I am sure I could do more. My Vit D was checked and said to be normal .My main need now is stronger painkillers.....any ideas?? I really hope this is helpful to somebody!