Any information on pain re Ibrut

[onu1tadi2]

I am on third month of Ibrutinib . And i have had some of those roving muscular skeleton pains. Usually a muscle pain goes away after a few days. This time, I have a more severe pain on right side of one of my knees. My Oncologist who speaks very little, said, when I last reported a pain, that it may have nothing to do with Ibru, which I do not agree with. Sudden onset of these pains started with the drug. Generally I have not had any terrible symptoms except for this and a cough. Any advice or information on this? Would be happy to hear it. Thanks all.

[onu1tadi2]

Yes. It is very different from anything else I have experienced. I am not even sure this pain I have now is muscle related. Mystifying. So I guess I will just wait it out. I feel that researchers are very excited about the new drugs that engineering of targeted responses to leukemia. But they care most about battling the leukemia and extending overall survival than the quality of life with all these side effects. I think they should research all the side effects more. But that has to do with who will support this kind of research, as it does not have immediate rewards connected with it -- eg. making a name for the researcher, or increasing Pharma profits.

[AdrianUK]

Scott, as in any business the best way to make money IS to think of the wellbeing of your customers. Ultimately profit is made when people are prepared to take your produce. When the risks are clearly outweighed by the benefits. The whole foundation of capitalism is that it takes mans greed and desire for profit and hopefully turns it around for good. There is no better way to make the world go round and as far as I know there has been no government or non profit organisation that has ever shepherded a drug all the way to market. Lots of researchers work in Big pharma or are funded by it. For sure good regulation is crucial. And most of the less helpful behaviour of pharma companies over the years has been driven by poor or absent regulation. We can be grateful though for the way regulations have allowed rare diseases to have new drugs studied for them.

[onu1tadi2 in reply to AdrianUK]

This may all be so. However, I have done exhaustive (layman's) research re trials of Ibru and related combos (to the degree I can understand them -- although conclusions very clear). No real clear outcome yet. IBRUT is at early stage. So many variations and question marks. Terribly tragic when it triggers a more dangerous form of leukemia or cancer in some users as do other drugs and treatments, I am thankful that the drugs like Ibrut exist and extend my life. But the world of research still is driven by eagerness by some scientists who wish to make a name for themselves in scoring a longer overall survival. And some studies suggest that IBRU is not as problem free as general impressions suggest. The goal is long term survival but i feel studies should add more focus on the side effects that too many people are seriously affected by. and hence quality of life. And of course the ultimate goal is to create customized drugs to accommodate individual genetic differences. That will take time. But I am cautiously optimistic about my treatment but cannot get a combo with Venetoclax in Canada yet -- they say results are not yet clear enough. But I am not sure it would be best anyhow. Do not know.

[onu1tadi2]

Great to hear and encouraging. I have been working throughout, and am 74. But no symptoms that last beyond a day except for some muscle or other mysterious pains which can last a couple of days. In which month did your hair start to get curly. Possibly for me a good thing, as i do not like my ultra straight hair LOL.

[onu1tadi2]

Yeah. If it is frizzy and makes hair brittle, not great.

[Hidden]

i started january 10 2019. It has worked wonders for me. However i have had 2 continuing side effects. rotating rashes and rotating joint/muscle pain. Their duration also rotates. some last less than a day. some longer. I am glad these are the only side effects i'm getting.

[onu1tadi2 in reply to Hidden]

That is good to hear. I was told by the head of a clinical trial that such symptoms should abate in about 6 months. So you are near that time. Let us know once you feel the symptoms are fewer and less frequent.

[Hidden]

Ferengis' were copied from humans-lol-except for the ears of course.

[wmay13241]

My wife (fNHL) took Ibrutinib for 15 months (2013-2014) - had horrible leg muscle cramps - still has them - I understand that once you take a BTK inhibitor it remains with you for life - UGH.

[Big_Dee]

Hello 1tadi2

One of the biggest issues with CLL either before treatment or after treatment, is determining if adverse symptoms we have, are caused by CLL, treatment or something unrelated to CLL. That is a very big box full to lift. I had roving aches and pains before treatment and also after B+R treatment. They last from one day to 6 weeks. I am not to worried, I just work through it. Hope you get too feeling better.

[Smakwater]

Although I am on venetoclax, I have a similar experience.

When I am moderately active, my muscles never completely calm down.

The sensation reminds me of the lactic burn I used to feel on the day after a big workout.

JM

[Smakwater]

Ya, that too.

[AnneHill]

Hi, I began Ibrutinib 3 weeks ago. I read a lot about the drug and side effects but 3 days after I started my left hand was agony. I couldnt make a fist. It was painful for 3 days. Then the pain began in my right wrist and hand. Also agony. I had pain in the side of my knee and my buttocks ( sore sitting down) pain in shoulder. Leg cramps.

Last week my lower back was in spasm. I could hardly move. Needed Tens machine and used heat pads.

Today the muscle on one side of my back is a lot better. I have a tender spot on the side of my foot. When I get up in the morning I have trouble walking because my feet hurt.

I havent been able to drive. Tomorrow Im hoping to meet a friend and be able to drive. No idea from 1 day to the next.

Im in the uk and have found that nurses dont know anything much about this drug. When I see my consultant Im going to ask about roving pain. Ibrutinib is a recent drug in uk outside of a trial.

Iv googled roving pain and Ibrutinib and 2 years ago on this site folk were asking about this pain. Some had been to hospital and xrays showed no damage. Doctors couldnt understand it.

. Newdawn has been in terrible pain. She, like myself already had arthritis. I have degenerative disc disease. It seems to attack those areas.

I have a few big bruises but others have faded.

I feel great in myself. More energy and enthusiasm. Last week I was anxious. Not being able to attend appointments without my Husband to drive really got me down. I asked my gp for pain relief and also take meds if I wake up around 4 am. Im in so much pain that it helps me to function when I get up later. Biofreeze roll on helps with pain that is red and hot.

I have had days that are better than others. We have to remember it is intended to treat the cll and I dont feel ill the way I might with other treatments.

From my research there is no doubt that the Ibrutinib causes these pains. The problem is knowing how long they will last and how painful they will be. I hope you will improve in time, Anne uk.

[fussybritches]

Interested in the muscle spasms. My husband gets the most awful spasms in his spleen area and liver area which last for a few minutes then abate. Sometimes they come back again very quickly, other times he is fine. We do not know what to do about it and the consultant does not seem worried. However it makes him feel dreadful and I cannot help in any way. He is on full Ibrutinib dose. If any one has any suggestions???????