Cll victim on Ibrutinib with obnoxious pain in knee would like to know if any of my friends here had heard of connexion between swellling of the knee and uric acid.
Gout is a possibility. So far Tylenol, physical therapy arenot helpinag at all.
I will try to see a rheumatologist soon to find out.
There is absolutely a connection between knee pain and uric acid. It’s called gout of the knee. If your labs show elevated uric acid you might want to talk to your doctor about allopurinol. I take it regularly with my ibrutinib.
I've had trouble with my knee hurting and filling up with fluid since my skiing accident over 30 years ago. i've recently discovered an amazing device that has changed my life! it's the denas pcm 6.. I can send you a link to purchase straight from russia if you would like to buy one ($140 including shipping). It is a microcurrent device that is very different from a tens unit. I went to an orthopedic doctor and she said my knee was toast..nothing to do but get a new one. She said i had bone on bone and all kind of other problems. The pain was incredible and I started gaining weight which made it hurt more. Then I hooked it up to a microcurrent device and wow! The liquid is gone and I can even bend it without pain! Incredible. I can walk and run with it too...no problems. I use it on the bottom of my feet too...it's supposed to help improve the lymphatic system too.. I don't know about that, but i sure can sleep better after using my denas on my feet for 20 minutes
Jeff— I was taking 300 mg of allopurinol for my first 18 months on Ibrutinib when my hematologist lowered it to 100 mg— have had miserable right knee and joint pains since. What is your dosage and do you know of any cons to taking allopurinol for an extended time? All blood levels are in normal range except ALC which is around 20. Uric acid is elevated at 6.9. I love this forum.
Sharon
Sorry you are in pain. One common side effect of Ibrutinib is joint pain. Some people don’t have this issue but I did. I could not walk. Doc switched me to acalabrutinib and no more joint paint. Might want to discuss with your CLL doc.
How are you doing on acalabrutnib how long have you been in it?
I have been on it for 18 months. No side effects. My numbers are all in the normal range. Lymph glands decreased markedly. They flare up occasionally like this week - they knew in advance I was getting a cold 
Other than this cold I have not had any infections or any other medical issues. Knock wood.
Doubt that I am MRDU due to time I have been on it and I have the double whammy of unmutated and tp53. My guess is that sometime in the near future/next few years I might need to add venetoclax or something but for now - I feel good with occasional dips in energy level.
Regarding cost. I am in US, insurance through my job and whatever blue cross is not paying AstraZeneca is picking up. My cost is zero for now.
Glad to hear your doing well on it as I am starting next week as well, feel a little worried starting treatment but I’ve been told this is a good drug to start with.
Are you on the full dose of acalabrutnib? Is that 2 x 200mg pills daily ?
I’m taking 100mg twice per day which I think is standard.
I have suffered from knee pain also and recently been told it maybe caused from gout, and to eat apples. I have never had gout and always thought the pain was from old injuries dreading any suggestion of knee surgury.
So I bought a new bag of my favorite apples. You know 'an apple a day keeps the doctor away' lol It's worth a try.
I had this. Similar to gout but caused by something different.. Very painful, I was put for a while on a drug called colchicine. Pre CLL days and apparently normally suffered by much older people than i was. 42 at the time.
Quote.....
‘’ Pseudogout is a type of arthritis that causes spontaneous, painful swelling in your joints. It occurs when crystals form in the synovial fluid, the fluid that lubricates the joints. This leads to inflammation and pain.
This condition most often affects the knees, but it can affect other joints as well. It’s more common in adults over the age of 60.
Pseudogout is also known as calcium pyrophosphate deposition (Like gout, pseudogout is a form of arthritis that causes sudden joint pain and swelling. The prefix “pseudo” means that it looks like something else. ... While gout is caused by uric acid crystals; pseudogout is caused by calcium pyrophosphate dehydrate crystals (CPPD).‘’
Just a thought.
Peggy 😀
My first few weeks on ibrutinib was a non event , no side effects . Then wham the joint pain was unbearable the doctor gave me allpurinol I took one pill and it made me feel worse I didn’t give it a chance. When I was diagnosed with cell my wbc was 183,000 and my numbers were dropping like a rock with ibrutinib so I figured my body was not set up to rid that many dead wbc that fast so I put up with the pain. As my numbers got under 100,000 the joint pain lessened then went to pre cll body pain levels. My numbers were in normal range in 4 or 5 months. It’s been a year now numbers still normal next blood test tomorrow
Total Knee Replacement and CLL Connected?
High Alkaline Phosphatase and knee/bone pain side effects with Venetoclax/Obinituzumab
Knee pain during the night and getting up in the mornings 
Total knee replacement. Looking for advice, guidance and wisdom.
Joint pain and Imbruvica
