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CLL Support Association
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How do you treat joint pain?

I’ve been having pretty bad pain in my hands and knees. Besides having CLL, I’m a Type 2 diabetic (though my A1C is near normal). I had joint pain before starting Imbruvica in late December, but recently it has affected more joints. Of course I see my doctors regularly, and take a med for the pain and put on Diclofenac Sodium gel and ice. I am trying acupuncture soon. Anyone have other suggestions? Thanks.

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Claritin without D has helped for bone pain. Ask your doctor if ok to take. Nurses tell us it works even tho it's an antihistamine!

Acupuncture is great...been going for 17 years. Dx 12 years ago....in remission since Aug. FCR worked.

What are your markers? Where do you live? 💕

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Thanks for those recommendations! I will ask my oncologist about Claritin and I’m trying acupuncture soon. My rheumatologist last week prescribed Meloxicam so hopefully that helps.

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Matt,

Take listen to Dr. Greger's podcast here and use the webpage search box for a series of linked short videos on non-pharmaceutical methods to reduce the inflammation that causes/contributes to joint pain.

nutritionfacts.org/audio/th...

Eat Well to Be Well - cujoe

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It is worth asking your oncologist about a TENs machine, I used to work in the cancer centre where I am now a patient, at that time they had a physio who specialised it that, and because I was off sick with pain, I was able to have an appointment with her, and she organised me a Tens machine, to try, and then to buy, and I was back at work in days. This was about 20 years, long before CLL.

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I never heard of that, I’ll look into it and ask my rheumatologist during this week’s appointment. Thanks!

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I too suffer from joint pain, knees, back etc. and have been on Meloxicam for about three years now. It has been a lifesaver for me. Regards Y

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Ysabeau, hoping it’s a lifesaver for me! My rheumatologist prescribed Meloxicam just three days ago. Do you recall how long it took for your joint pains to subside? Thanks very much.

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Hi Matt

Within a week my joint pains subsided. The only thing I found was that it was a bit of an appetite reducer;. In my case that was not bad thing. I also sleep much better on it.

Hope this does the same for you, (pain going that is). Regards Y

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Thanks! I’d be thrilled if the joint pains subsided in about a week. I started it last week.

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One week on Meloxicam and no improvement. In fact today I have sever pain in the back of both hands. I have rheumatoid arthritis and take one 15 mg. per day. Is that how much you took? Thanks.

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I take 7.5mg. in the morning and again before I go to bed. I am so sorry this is not working for you. I suppose different medications work in different ways depending on the person. I do hope your pain gets better in time and wish you well. Regards Y

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Only a week on Meloxicam so I’m hoping joint pain goes away ASAP. I’m going on a cruise in six weeks and pray it’s gone by then.

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Hi Matt: I hope your doctor, and pharmacist who is providing your Imbruvica, that you should NOT take any NSAID drugs while on Imbruvica. That includes aspirin, ibuprofen, Advil, Excedrin, or anything with anti-inflammatory purposes. That's because those meds are considered "blood thinners" and when combines with Imbruvica, can increase the chances of any type of bleeding. I've also been told not to take Turmeric. Only Tylenol is acceptable. Of course this makes things hard for those of us with joint pain, myself included. I've tried almost everything, and am now (at the suggestion of my docs) trying CBD oil, and may progress to medical marijuana.

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Cook4650: thanks. There are so many opposing recommendations by different doctors. The well known plant-based doctor Michael Gregor raves about Turmeric. (I’m vegan and since becoming one never felt better and lost 10 pounds. I have had joint pains since starting Imbruvica in December. The Meloxicam my rheumatologist started me on a few days ago seems to be working.

One problem in our dysfunctional health system: the average number of hours that medical school students take nutrition courses is 12! Most doctors just keep prescribing pills instead of healthy eating guidelines.

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Cook4650, I didn't have joint issues prior to starting Imbruvica, but I started having trouble less than a week after I began taking it. I tried cherry juice and also the turmeric derivative that is said to help with inflammation, but neither did anything to curb the pain and swelling. My oncologist put me on prednisone which worked great! My doctor didn't want me on it long term, so she took me off, but the pain and swelling came back...but not as bad. I would probably be still doing the off and on with prednisone, but I started having other issues and was taken off the Imbruvica completely.

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Sorry that particular treatment wasn't the one for you. I have heard of quite a number of folks with CLL who developed joint pain. Oddly enough, I don't know if I would be able to tell the difference between arthritis pain and Imbruvica pain! LOL! But yes, I can tell my issue is osteoarthritis. I had it for years before my diagnosis, and it has been confirmed by many, many scans and X-rays. It also runs in my family, along with a whole host of other things. Another thing I did hear somewhere was that herbal and/or supplements (e.g. turmeric) take a while to build up enough to tell a difference. I know nothing about that from my own experience. As for prednisone, I WISH I could stay on that forever!! I have taken 2 short courses of it for other issues, and felt like a million dollars!! But alas, in the long run it takes a toll on your body. Lots of bad things, as I'm sure your doctor told you. Frankly, I've thought it would be great to be on it for about a week around Christmas!! I would be my old multi-tasking whirlwind again! But no, not a good idea. I wish you the very best! I guess I'm lucky that Imbruvica has worked well for me. Not sure if i could ever come off of it.

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Sorry to hear you have so much trouble with osteo. Both my parents have issues with it, but thankfully it hasn't shown up in me. My mom was on a lengthy regimen of prednisone for an arthritic condition, and the worst fallout was osteoporosis. However, it should did help while she was on it. Oh well...

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My rheumatologist put me on prednisone but it shot my blood sugar up and I quit it (I’m a type 2 diabetic). He put me on Meloxicam last week. Hopefully that helps alleviate the joint pains. Now the Imbruvica is also causing a tongue sore and lip blister. My oncologist recommended Orajel. I’m also rinsing with warm water and baking soda.

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I had the mouth sores and gum irritation when I first started ibrutinib. My oncologist wrote me a prescription for DMB Solution which I swished 4 times a day. It really seemed to help.

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Lisa-1959: Thanks! I’ll ask my oncologist about it during my appointment on Thursday.

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I have been using a "root butter' from Healthy Roots that has a number of natural oils along with "premium CBD extract". Is is pricey but amazingly effective for soft tissue pain associated with the joint pain. You might consider it.

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Is medical marijuana available to you? Even if you don't want to smoke there are other things available and know few people with worse pain issues than CLL patients have and they swear buy Just a suggestion

I'm a patient and use for SE I get from current treatments

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Hi kwarehime: Yes, I live in NY State so medical marijuana is available to me. In fact last week I obtained my ID card and purchased a product from a dispensary. Not sure yet just how it will work for me, or what the dosage will be. I am really hoping to be able to alleviate some of the pain of my osteoarthritis. I also take Plaquenil, as I have Sjogren's Syndrome. I have many other issues that I won't go into here! Good luck to you!

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best wishes dear consult your dispensary expert FYI I am not

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Have you been tested for rheumatoid arthritis? I’ve been treated for RA since 2003 and diagnosed with CLL in 2009. There is a correlation between the two diseases and RA is often successfully treated using lymphoma remedies.

Following certain CLL treatments, my nearly crippling RA has been in remission since early 2015.

You might want blood tests to be checked for Rheumatoid Factor and also anti-CCP factors.

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I was diagnosed with Sjogren's in 2012 and 6 months later with CLL. Sjogren's is of course another autoimmune disorder. My rheumatic factor was elevated, among other things.

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What is CPP? I’m new here.

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Anti-cyclic Citrullinated Peptide (anti-CCP). WebMD says it is proteins produced in response to inflammation. Nothing to do with tests for CLL, only RA.

RA, being an immune system disease, shows good response to some CLL treatments. Notably methotrexate and rituximab, some of the many meds that worked for me... for a while. Obinituzumab (for my CLL) put my RA into remission and my CLL into remission and I tested MRD negative.

A year + afterwards my WBC had increased and I went into a trial study on single agent tirabrutinib. RA has remained in remission and my CLL response has been really good.

My oncologist and rheumatologist jointly published a paper based on my response to obinituzumab.

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Thanks for the info. I need to get my oncologist and rheumatologist to communicate with each other.

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I am not in treatment at this time however I take a half a dose of turmeric daily and went on the plant based diet. I also do stretching exercises and go for long walks. Check with your doctor before taking the turmeric. Even supplements could interact with medications.

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Have your B12 and folate levels checked... you may not be getting much/any from a Veggie diet... VitD3 too...

~chris 🇨🇦

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I take B12 daily, a B complex (contains folate) and D3/K2. I also drink mineral water, however thinking I should take a multivitamin and mineral vitamin? Isn't there enough folate in green leafy vegetables?

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Thanks! I am also on a plant based diet and recently started turmeric pills. I’ve taken B 12 for about two years. Trying acupuncture soon and may buy a TENS machine,

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Have you noticed any difference? It might be my imagination or coincidence however my lymph nodes in my neck shrunk down to a tiny pea.

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Since starting Imbruvica in December, my lymph nodes have shrunk and my markers improved. Just the damn side effects are annoying. Now I have a mouth sore and lip blister. I’ve been rinsing with baking soda and warm water. My oncologist recommended also using Orajel

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I believe there is a special mouth wash for chemo patients, probably Rx. Hope things get better for you.

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Thanks. I will look into that.

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Hi Matt, acupuncture works well for pain or cortisone but if you haven’t had X-rays of you knees and hands get them. You might need surgery on them. Whether you have CLL or not joints wear out. Good luck, Anna

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I also have seronegative rheumatoid arthritis. I am on meds for that. I tried acupuncture a few days ago and it already helped. I’m going back weekly for at least the next month, prior to going on a cruise. I have had zero joint pain since acupuncture. Thanks for your reply.

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Great I’m glad that it worked for you. Some cruise ships also have acupuncture on them. Check it out. Have a great trip! Anna

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