My right hip and both knees are hurting so bad it hurts to stand for any length of time. I have had one knee replaced and now they want to do the other one. But in the last few days my hip is probably worse.
I know some people have had to quit Imbruvica for that very reason. I have already talked to my doctor about this problem but they don’t seem too interested in helping me. I already take a low dose pain medicine for my back but it doesn’t help much.
Anybody have any suggestions?
Thanks for any help.
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BATony
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I empathize with your pain, having had back muscle spasms much of my life.
In 2012, just before I entered a clinical trial, my CLL doctor explored the causes of strong muscle spasms in my thighs and diagnosed a HHV-6a virus as a contributing cause.
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In 2016, after stopping Ibrutinib for a skin rash, and starting Venetoclax, I started having pains in my left knee, thigh and calves. My back doctors put me through several MRIs, Physical Therapy, xray guided steroid injections and eventually 2 back operations to deal with stenosis and osteoarthritis. I am now pain free as long as I do my PT exercises diligently.
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From that long story, I would suggest that you consider asking your CLL doc to pause your Ibrutinib for a few weeks to determine if your joint pain subsides. If the pain is less, then you might want to explore changing medications to either Idelalisib or Venetoclax.
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If the pain does not subside, and there is imaging suggesting osteoarthritis, then Ibrutinib might not be the cause, and joint replacements might be needed. But as always - your doctor needs to be involved, and provide good support to your investigations and questions.
I forgot to say I had a laminectomy discectomy in 2008 which helped somewhat but not entirely. I messaged my oncologist again this morning to see what he might be able to do. I am 60 and have spent my whole life as a machinist so I have been on concrete a lot and I know I have a lot of arthritis but man does it wear on you.
Hi Tony - Sorry you are dealing with this. Many people on the site have had this type of pain on ibrutinib. Not sure where you live which may impact availability but I would ask doc to switch you to acalabrutininb unless doc is ready to move you to venetoclax (with or without other meds).
All of this depends on your markers and where you are in the treatment cycle.
If your doc is not keen on helping you I would get a new doc (is doc a CLL specialist). I realize in different countries there might be issues with switching docs.
I could not walk on ibrutinib (no pre existing conditions) - a few days after the switch all was good. I did not have any days off in between. My doc strongly believes that with my markers you should not take breaks from BTK inhibitors. My blood counts have been good for two years on acala although with my markers I may need to add venetoclax soon.
Although I had no pre-existing conditions I had episodes of excruciating joint pain in my knees and wrists/hands for the first two months of Ibrutinib. You didn’t mention how long you have been taking it. After two months the episodes reduced in intensity and frequency and usually in only one knee for a day or two about 1-2 times monthly. Ice packs helped especially at bedtime. I also used the Salonpas pain patches with aspirin even though it is contraindicated for low platelets. I couldn’t see any effect on my platelets counts. Hope this helps.
Hi all, I enjoy all of you, with your help and compassion with all of this. I don’t post too often on here but check it out often.. I was sort of wondering the same thing, my dad has been on ibrutinib (3 a day) for just over a year (December 2019) and mostly all was good. Just recently his hip/thigh region has been really painful, making it hard to walk and just do normal stuff. Just wondering if this could be a side effect of the drug and if anyone had this happen at a years time? I know effects change all the time etc. Thanks all in advance.
I have been on Ibrutinib for a almost exactly a year. I was told I could take Motrin for the pain even with the dangers inherent with taking ibuprofen. At this point I don’t care I just want some relief. I am only 60 so retirement is not possible along with my 401 taking a huge dive. Just have to fight through I guess. Not to mention my wife got laid off and lost her insurance too.
The sad thing is people in this country that don’t deserve disability get it and the ones that really need it have to suffer.
Just got a message from oncologist and he passed the buck to my orthopedist and PCP again. I told him about the known association between Imbruvica and joint pain but he either doesn’t care or know. I am somewhat surprised by his lack of help because when I am in his office he’s great.
I am getting a little frustrated by the whole thing.
I suffered over a year with knee pain. Coincidence or ? I drank 3 oz of tart cherry juice every morning and it went away?? I thought I had gout. My uric acid levels were normal.
Check with your doctor, Tart cherry juice may effect blood thinning?? I have just switched to Alcabrutinib. Starting tommorrow.
Ok I got a response and he did say that if you think the Imbruvica is contributing to what is currently going on then he would advise to hold the Imbruvica for 7 days and these symptoms you are experiencing should resolve completely.
His recommendation again would be to speak with an orthopedic surgeon for perhaps a steroid injection or surgical management.
Cancelled knee replacement this morning as their is now way I could do it with the bad hip. Also going to stop Imbruvica for a week to see if it goes away.
for me, bone & joint pain is pretty severe. it seems pressure on bones for as little as 10 minutes rehires me to move into another position to get some relief, but starts all over again. rib cage hurts from tossing & turning trying to sleep. standing, sitting, laying down, all painful. Pain feels like an ice cold feeling, burning pain, sometimes sharp nerve pain, other times tingling & numbness. aside from the pain generated by position, there are random pain that appear and reappear at different places.
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