Rheumatoid Arthritis (RA) and Chronic Lymphocytic Leukemia (CLL)

Billy1mate

Hi All, Apologies for being nosey. Is there anyone on the forum that has both RA & CLL? You can probably guess that I have both. I have had treatment for the CLL and ‘touchwood’ I have no joint pain and am on no RA medication. In some respects I am lucky to not be on MTX and the other anti-inflammatory tablets but I seem to be an odd case.

Lane

Hi @Billy1mate welcome to our online community where you will meet members to share tips and advice.

I understand that have had RA for some years, whilst serving in the Royal Navy. You have had bad flare ups but have managed to cope. You are asking if anyone has both RA & CLL, as you have both. You have had treatment for CLL with no joint pain and no medication for RA. 

Whilst you wait to connect with our members, I have attached a couple of links from our website for you to have a look at, one about Rheumatoid arthritis and the other self help:

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://www.versusarthritis.org/about-arthritis/your-experiences/hints-and-tips/self-help-hints-and-tips/

Thank you for getting in touch with us and I hope you continue to do so. I am looking forward to hearing further from you. 

Best wishes.

Nfk_gal0617

Hi Billy, I am unble to comment on CLL but my daughter had 2 years treatment for Acute Leukemia. She did develop mobility problems, it was believed it effected her nerves, no reflex action when rubber mallet was used to test tigger points. At the time the medicics could not tell us if it would return.

Luckily things improved when she finished treatment. However in her early 30s she has had a hip replacement, the high dose steriods given to assist her cancer treatment were sighted as the cause. She was still growing at the time.

Treatment has come on leaps and bounds since then.

I wish you the best and hope you keep as well as possible, Nfk gal

Billy1mate

Thank you both for your responses, they are appreciated. It is a double edged sword, whilst I don’t want to be the only person with both, I don’t want anyone else to have it either. The only bonus of the leukemia is the treatment has helped my arthritis but the consultants don’t know why. I made sure they were speaking to each other which has happened. I cannot fault the treatment I have received from everyone.

Billy1mate

Surely I cannot be the only person on this forum with both conditions, can I?

stickywicket

Unfortunately, @Billy1mate , in all my time on here I don't remember anyone mentioning having both.

I did wonder, though, about your treatment. When, many years ago, I had breast cancer and needed chemo, it really helped my RA. What I didn't know then was that methotrexate is a key element of chemotherapy. I've been taking it (obviously in much smaller doses) for my RA for over 20 years now. Might chemo, and methotrexate, be part of your treatment for the leukaemia?

Billy1mate

Hi @stickywicket thanks for the reply. I stopped all of my arthritis tablets which included methotrexate when my chemo started, which was Obinutuzumab and Venetoclax. If either of those contain methotrexate I don’t know, but there were several different treatments and I did ask if it might help my arthritis and haematology were hopeful but couldn’t give me that guarantee. Seems I am a bit of a special case, who knows hopefully my situation will give the hospital and others an answer in future.

stickywicket

Interesting. I've never heard of either drug but the reliable www.drugs.som does say "Venclexta will suppress the immune system...."

(Venclexta is another name for Ventoclax and, clearly, although not containing methotrexate, is does suppress the immune system which is what all drugs for inflammatory forms of arthritis do. So I guess you would feel better and long may that continue.