Joint/Muscle pain

[Westie11-]

Has anyone who is in Acalabrutinib suffered with muscle pain after being on it it for some time? I have terrible pain in upper left leg for over 2 months. After an x-ray and seeing a physio was told it was Greater Trochanteric Pain Syndrome which is a form of Bursitis. This , when I read up on it comes from hip but I still felt it was more from muscle. Biggest problem was cant go upstairs in normal way as cant bear weight on left leg, Now pain has moved to right buttock and is much more severe. I have spoken to doctor at cancer centre who said any pain caused by tablets would have happened when first started treatment. Would like to know if anyone in this big group has suffered anything like this? Thanks in advance.

[BluMts]

How long have you been on Acalabrutinib?

[Westie11- in reply to BluMts]

Been on it for 13 months but did stop for 3 weeks in October due to being on antibiotics .

[LeoPa in reply to Westie11-]

I didn't know you had to stop A for ATBs.

[Westie11- in reply to LeoPa]

I had pneumonia and was told to stop to give my body a chance to fight the infection and start again when I felt better which I did

[flipperj]

Yes, I had lots of pain on Acalabrutinib which did not develop until after 6-8 months of therapy. It was bad enough that I ended up in a wheelchair for some time.

Late onset joint and muscle pain is associated with all of the current BTK inhibitors per the experience of 2 CLL specialists I have seen. They each indicated that it’s a much more difficult situation than the common early onset pain syndromes and this has been the case for me.

[Westie11- in reply to flipperj]

Thank you. Sorry to hear your pain has been so bad. I hope mine doesn't go so bad. Your answer proves it is connected to the Acalabrutinib, my doctor said it would have happened at begining of the treatment, not now. I think we all know our own bodies better!!

[flipperj in reply to Westie11-]

My doctor indicated she has had cases with pain so bad they end up in the hospital on morphine. This was prior to my taking treatment so I knew the risks going in. There are still a lot of unknowns and poorly understood/appreciated phenomenon associated with BTK inhibitors. Don’t be afraid to seek a second opinion if the situation warrants.

[Westie11- in reply to flipperj]

Thanks, I was never told of this side affect, only headaches and sickness which I overcame after a few weeks. I am convinced now it is the drug that is the cause.

[skipro in reply to flipperj]

Hi

If it's the bursitis, a steroid injection into the greater trochanteric bursa can be a miraculous cure!

I've seen this hundreds of times in my ortho surg practice

[Westie11- in reply to skipro]

Thanks, that's what I was hoping for but pain from there is minimal now which makes me think it wasnt that as pain has moved to right buttock and is far worse!!

[NoClew in reply to flipperj]

So sorry to hear your story. The hope was when you said 'used a wheel chair FOR A WHILE'. Did these specialists have a solution to fix your pain/weakness issue? I have seen several specialists from pain, cancer, orthopedics, physiatry, rheumatology, neurology, with no answers re: what causes it. And am getting no help from my team except prescriptions for duloxetine (that does nothing) and ever increasing doses of Norco that takes the edge off the pain, but otherwise clearly harmful and no real remedy.

[flipperj in reply to NoClew]

I have also seen the types of doctors you describe with largely the same response, palliative care with little effort to determine or correct the cause.

The correlation of pain syndromes to BTK treatment is well established so getting off the BTK therapy or switching to another drug in the class is an option which works for some. I have tried switching from Acalabrutinib to Zanubrutinib without improvement in pain and mobility but did get some improvement in other areas so it was a worthwhile endeavor. Coming off BTKis entirely is not an option for me as the Acalabrutinib triggered the cancer to mutate with explosive growth anytime BTK inhibition is interrupted. It seems I am married to BTK inhibitors until the cancer finds its way around them so my only option is to try and improve the situation.

I have found some help with the pain and disability in seeing a functional type Dr. who takes a more traditional and time consuming root cause type of approach to medicine, lots of testing for nutrients, pathogens/chronic infections, genetic tests etc. Where I am, this means you pay out of pocket but it's something which has paid off for me in the past.

[NoClew in reply to flipperj]

Thank you for your response. Seems our similar journey with Acalabrutinib now have us both locked to the BTKIs according to my specialist, too. Glad to hear you have had some good results with functional medicine. Trying to find a good one has been as frustrating, bordering on absurd. I am in the Chicago area where a recommendation to a "functional" doctor turned out to be a physiatrist and PT. 😏 I am currently going for acupuncture again, but so far not much help for this pain and side effects. May I ask in what area are you? How did you find your doctor? Any suggestions?

[kitchengardener2]

I am three years into my Acalabrutinib treatment. I don't know if it is muscle or joint pain with me but it seems to move from my right knee to my right hip. Then to my lower back but is most severe in my left shoulder, where it's been for a few weeks. My CNS advised that I may get joint pain right back at the beginning and if I did, then I should take paracetamol. The left shoulder seemed to get worse after my last covid vaccination but since I hadn't had problems with the previous seven, I wonder if its just coincidence. I take cod liver oil with multi vitamins and added vitamin D. Living in the UK we don't get much sunshine in the winter but we are lucky enough to be able to get plenty of holidays in the sun.I am 71 and so suppose it could also be age related.

Perhaps it's something we have to live with but I will mention it to my consultant in January.

Interested to see what others have to comment about this.

[Westie11- in reply to kitchengardener2]

Thank you for your reply. You sound similar as my pain started on left leg and is now more severe in right buttock!! I don't think when you go to GP surgery they look at your notes and think if medication is cause. Problem too is you never see the same doctor when you go to surgery. I do take Vitamin D and Glucosamine with Condortin. They blame everything on age related I think when they dont have an answer!! My biggest problem is not sleeping as pain can be worse when in bed.Wishing you pain free days.

[kitchengardener2 in reply to Westie11-]

Agree that during the day, the pain is somewhat diminished but when I get to bed, finding a comfortable spot to lie on is hard. I also have the frequent loo trips during the night ... where does all that liquid come from! I often take a couple of paracetamol if the nighttime pain is really bad and then I seem to sleep. If you don't mind, I will follow your posts to see how you progress. I really don't want to stop the Acalabrutinib because with it, my bloods are in good shape. My next consultation is January but will be a telephone one. Suits me so that I don't have to endure the walk through the hospital, where infection is likely to be rife.

Incidentally, I am in the warmth of Tenerife for a holiday and have just had a reasonably long walk without too much trouble.

Stay safe 🙏 xx

[Katie-LMHC-Artist]

Good morning from Boston! I am on Acalabrutinib. I was told in the beginning headaches and possible muscle pain for the first 2 weeks on the medication. As someone previously posted there are still a lot of unknowns. I believe the doctors just go by the information for the drug provided by Astra Zeneca. I felt like a bit of a complainer when I told both my CLL Specialist and local Hematologist that I continued to have headaches. After a year, I now wake up with a slight headache and drink a cup of coffee to manage it. Months into taking Acalabrutinib I started to have muscle and joint pain. I would wake up and put heating pads in my bed to manage the pain. I then started to take Claritin 24 hour and some magnesium in addition to drinking more water. I read that they sometimes give Claritin to chemo patients for bone pain. My muscle pain at night seems to be better. Occasionally I wake up with a little muscle pain and use the heating pads. I hope this helps. Pain is real and you have a right to bring it up to the doctor. Search previous posts regarding what others have done to manage muscle and joint pain. Take care!🥰

[Westie11- in reply to Katie-LMHC-Artist]

Thanks for your reply. I am surprised to see people with muscle pain still on Acalabrutinib. I thought perhaps an alternative would have been offered? I felt quite well in myself before starting treatment and I don't want to live my life with this pain. Once walking I am fine but getting up from sitting or bending slightly causes pain. As you say doctors go by what Astra Zeneca say as my doctor said "if you get joint pain it would be when you start taking them", but that isn't the case from comments in here. Thank you and wishing you well.

[Katie-LMHC-Artist in reply to Westie11-]

When I hit the 6 month mark I had bad joint and muscle pain at night. It slowly went away. Now it’s occasionally. My doctor has given me a choice to switch to Zanabrutinib. I told him I would wait until the holiday is over to make a decision. I did read that a percentage of people experience headaches and muscle/joint pain on Zanabrutinib. I was just approved for free medication from Astra Zeneca for another year. I really don’t mind a slight headache in the morning and occasional muscle/joint pain. I wish you well managing your side effects. Other people on this site may have suggestions. Look in previous posts. Take care!🦋

[Westie11- in reply to Katie-LMHC-Artist]

Thank you.

[Bethsaida in reply to Westie11-]

I am 7 months into taking Zanubrutinib. I have had terrible stomach pain and am currently taking Nexium 2 times a day. I still had bad stomach muscle pain when bending over or doing anything strenuous. As I suffer from anxiety, I also see a psychiatrist. I had an endoscopy done and my gastroenterologist said the amount of damage did not equal the amount of pain I was having . My psychiatrist said it well could be nerve pain and he added a small amount of gabapentin to be taken at bedtime. This helped me so much, not only to sleep better but the pain is about 80% gone.

[Westie11- in reply to Bethsaida]

Thank you for reply, I read another article and patient had been offered to change from Acalabrutinib to Zanubrutinib and was deciding what to do. Reading your experience it doesn't sound much better than Acalabrutinib for side affects.

[Bethsaida in reply to Westie11-]

Don’t make your decision by my experience. I have multiple drugs I can’t tolerate. Many others are saying they don’t have many if any side effects on Zanubrutinib. I really do think it probably is the best tolerated BTK. I am an exception, but I am really beginning to feel pretty good after the addition of the nerve pain med.

[Westie11- in reply to Westie11-]

Thanks , think I will discuss this with my consultant.

[flipperj in reply to Westie11-]

I switched from Acalabrutinib to Zanubrutinib. The side effect profile for Zanu is not necessarily better than Acalabrutinib, it’s just a bit different.

[NoClew in reply to Westie11-]

My pain on Acalabrutinib continued for 3 1/2 years when I finally stopped therapy. When my CLL recurred, I changed to Zanibrutinib but the pain recurred as well. On Z, the leg cramps became even worse.

[Westie11- in reply to NoClew]

So sorry to hear you have had pain for such a long time. Another patient said Zanibrutinib still had side affects but just different to Acalabrutinib so think I will see if I can reduce dose. Hope you get rid of leg cramps as that's not good either. Wishing you all the best.

[NoClew in reply to Westie11-]

I reduced to 1/2 dose of Zan almost from the beginning with great success. My large masses of lymph nodes were undetectable on my 9 mo. Pet-CT! Wishing you the best success.

[Westie11- in reply to NoClew]

Thank you.

[Teemed]

I have been on Calquence almost 2 years and blood work looks great

I do get joint stiffness and pain but it’s not terrible. Stretching , walking and moving along with the recommended water intake greatly helps. If I skip the physical activity for a couple of days it starts again

Best to you!!

[Westie11- in reply to Teemed]

Thanks for your reply. However, at moment getting pain with any movement like a slight bend and getting up from chair is the worst so don't feel able to exercise but I do want to keep active so will try exercises when less painful.

How long have you been getting the joint pain for please?

[Teemed]

it started about 6 months after starting meds. So I say for the past year I’ve had it but I’m fortunate as it’s manageable and forces me to keep moving

I’m sorry you are experiencing this and I pray you discover some relief

[Katie-LMHC-Artist]

Unsure if this is helpful but will share an interesting story about sciatic pain I had. I had an injury at the end of 2020. I developed bad sciatic pain. I had not started Acalabrutinib yet. I went to physical therapy 3 times, had injections, saw three different specialists, and a chiropractor. I thought I was going to have this pain forever. I took NSAIDS and Tylenol quite frequently and used my heating pads at night. I then started Acalabrutinib last December. My local Hematologist said half jokingly I may wake up some morning without pain and that perhaps enlarged lymph nodes were hitting nerves causing the sciatic pain. 7-8 months later I discovered the sciatic pain was just about gone. In the book: “For Blood and Money” which is the history of how the BTK inhibitors were developed and came to market (Great book to read if your interested), a patient who could no longer walk and was in a wheelchair due to excruciating pain started on a clinical trial of one of the BTK inhibitors. A month later he walked into his oncologist office. The BTK inhibitors decreased his lymph nodes and reduced the pain causing the severe sciatica. I had to mark the page and share with my local hematologist because I believe once my lymph nodes starting decreasing my pain got better. Take care!!!🦋

[Westie11- in reply to Katie-LMHC-Artist]

Thank you for sharing your story. Will bear all this in mind.

[FifthFloor]

I'm still in watch and wait, but recently began to suffer a rash of unexplained muscle/joint issues, including this week hip/leg symptoms identical to yours. I'm wondering if it is a lesser discussed CLL symptom, or some other cause.

[Westie11- in reply to FifthFloor]

I had no symptoms before starting treatment but reading one of other replies they felt pain decreased when lymph nodes decreased in size. The muscle pain doesn't seem to be accepted as being caused by the drug by my doctor at cancer hospital but after all my replies will be discussing with him. Wish you well on your CLL journey.

[Katie-LMHC-Artist in reply to FifthFloor]

Muscle and joint pain could be due to enlarged lymph nodes if you are still in wait and watch. When you do start treatment see if the muscle and joint pain subside. 😉

[Westie11- in reply to Katie-LMHC-Artist]

Hi have been on treatment for just over 12 months and next blood test due begining of January. Might try and bring it forward.

[FifthFloor]

Saw that reply and saved it; so could be a link. Many thanks for your post, and I hope you find a solution very soon.

[Katie-LMHC-Artist]

Good morning. My sciatica pain went away when my lymph nodes decreased. The muscle and joint pain I experienced is due to the Acalabrutinib. The patient info from Astra Zeneca states that Acalabrutinib can cause muscle and joint pain. Hope this helps!

[Windblown]

The pain you are experiencing sounds identical to mine. I have been on Acalabrutinib for six months. About 3 weeks ago leg pain started in my thigh. Sometimes in buttox. Now in both legs but mostly in the right. I can't go up stairs normally. My right thigh has no strength. Pain is not as bad when I am moving. It's worse at night.Methocarbamol and heating pad help me with the pain. Methocarbamol was a med I had taken a few years ago for back pain and still had some left over. So that was self prescribed. I don't recommend taking it without your doctor's approval. I see my cll specialist the end of January so I'll discuss it with him.I was surprised to get this pain after six months. I walk, bike, some yoga and kayaking. I never feel pain when biking. That seems odd because I am using my thighs. I think it's the Acalabrutinib. But, I don't want to stop the Acalabrutinib. I'm hoping the pain, and yours, will subside.

Thanks for writing this post.

[Westie11- in reply to Windblown]

Hi yes sounds very like mine. It started out of the blue, I had been for a gentle walk then go upstairs when I came back and couldnt without dragging myself with the aid of bannister. I could cope with not managing stairs but this pain in my buttock is really bad. Like you, ok when walking, but getting up from sitting down is horrendous and especially first thing in morning as you get out of bed. Any movement that is slight bend or to side causes like a spasm in muscle . Left leg where it started isn't painful now but still can't do stairs, so all pain is in right buttock now.Thanks very much for your reply.

[Varney]

Hi Westie11,

I had been on Ibrutinib 420mg for 2 1/2 years when I went from being very active, playing pickleball several hours a day to needing a walker to go to the bathroom because of the severe pain in my right leg. I could not put any weight on that leg. I am only on Ibrutinib and no other meds. I went to an orthopedic surgeon thinking it might be a hip problem and then to Duke University to check out my lower back to ascertain if anyone of those areas could be eliciting the pain. All checked out negative. At the time I was going to Mayo Clinic and asked them what they thought about lowering my dosage to 280mg to see if the Ibrutinib was possibly the culprit. They agreed to do it and after about 2 weeks all pain was gone and I got back to a normal pain free routine. I have continued on the Ibrutinib at 280 and in April it will be 5 years. My blood picture remains the same (normal) as when I was on the 420.

I am by no means advocating reduction of meds. Each individual is different. I am just relating what I did and it happened to work fo me. Wishing you the best.

Varney

[Westie11- in reply to Varney]

Thank you . I was thinking of getting dose lowered. No way can I carry on with this pain so must do something.

[66dd]

Yes , lower back, had the xrays etc. never goes away. All the Dr.'s have No insight, plus I am married to a Dr. It was worse on the Ibrutinub.