Arthritis not imbruvica

[Mcpill]

I have had knee problems for quite sometime now. Last year I had a shot of cortisone which really helped when I developed a baker's cyst. Since my ankles also ache and crack, I have just blamed the imbruvica which I have been on for 25 months (and doing fantastically). Yesterday I returned to my orthopedic doctor because now both my knees have been quite bad. He gave me another shot of cortisone, and I will return in two weeks for a shot for my other knee. I expected to hear that yes, it was the imbruvica, but the doctor said I had severe arthritis and that most in my condition would be having two knee replacements. Since that is not be possible, I will just hope to be able to make it as long as possible, and then return for another shot as needed. Strange as it may seem, it was actually a relief to hear that it was arthritis. I have done some research and not been able to find imbruvica as a cause of arthritis. To be fair, I had some arthritis before ever even being diagnosed, and it does run in my family. For those wondering why they have joint and muscle pain, you might want to check in with an orthopedist.

[Newdawn Administrator]

Glad you have uncovered the cause Mcpill. Unfortunately I have pretty bad arthritis but am not on ibrutinib and am untreated. The thought of a treatment that could further aggravate my joints is very concerning.

Hope you find some relief for your knees if you're unable to have the replacement surgery.

Regards,

Newdawn

[kc1953]

Why is it not possible for you to have knee replacement surgery? I had my right knee done in December 2016 and will probably have my left knee replaced within the year. I am in remission after 6 rounds of BR and my CLL specialist indicated getting the surgery was perfectly ok. Now you would probably need to stop ibrutinib for a few days before surgery.

[Mcpill in reply to kc1953]

Well, my specialist said definitely no knee replacement. Ortho doc believed I might need to stop for 4 weeks, tho that was just his thought. I have read some research articles which stated that long term survival decreased if Imbruvica was stopped for more than one week. I am fine for now with the cortisone, and I know that I have read about a gel that can be inserted instead of knee replacement, so i will research that as well. Just one day at a time.

[kc1953 in reply to Mcpill]

I believe you are speaking of a hyarulonic acid injection. I am going to have one of those on my left knee (non surgically replaced) as the recent cortisone shot didn't take. I am visiting my CLL specialist this Friday and will ask about knee replacement surgery if I end up on ibrutinib at some time in the future. It sounds like it may be wise to have my left knee done while I am in remission.

[Mcpill in reply to kc1953]

Yes, that is it. Please let me know how that injection works. I would definitely have the knee replacement done while in remission.

Good luck!

[lankisterguy Volunteer]

Your analysis may be correct, but I will pose a counter hypothesis. I find that CLL has destabilized my immune system and like many I see autoimmune reactions, especially when I am in treatment. My psoriasis/T-cell dyscrasia flares and my back problems (arthritis/stenosis) are more dramatic. Could these be both autoimmune reactions?

Borrowing on Wayne Wells analogy: in my case when the CLL bear advances - treatments for CLL seems to anger the bear, so it responds by attacking my skin and vertebrae.

Len

[Mcpill in reply to lankisterguy]

It is all so confusing, a chicken or the egg scenario. Not really sure in my case. Imbruvica can certainly cause problems, and I did have arthritis issues prior to diagnosis. I suspect I also want to stay on Imbruvica for as long as possible so am willing to blame anything else. My only problems have been knee pain, edema, and some stomach issues.

Thanks for you thoughts. I will continue to post on my response to the cortisone.

susan

[MonD]

Does anyone know if those of us with arthritis have greater tendency for even more joint pain with imbruvica? Trying to decide between fcr and ibrutinib for front line treatment as nearing...

[lankisterguy Volunteer]

To MonD,

I doubt you will get reliable statistical data on that choice. I suggest you make the decision based on genetics- consult your CLL expert.

IMO if you are Mutated 11q or Mutated Tri 12 then FCR may give you 10+ years of remission. UnMutated or any other genetics the risk of marrow damage and Richters makes the use of Chemo more dangerous.

Len