New here...... was wondering if anyone has non-hodgkins lymphoma and RA? I do. While on six course of chemo this summer my RA was under control. I have read about Rituxin being used for RA and thought WOW it helped me. Well as soon as the chemo drugs got out of my system the RA was back worse than ever. Then Dr tells me I have to begin Rituxin every 3 mos. for a year as "maintainence" I thought oh good that will help the RA...... NOT. So I am thinking it was most likely the 100mg of steroids I had to take for 5 days following each chemo session.
I see the RA dr the end of Jan. I would like to try some of the RA drugs I see advertised on tv.... but so many of them say "may cause lymphoma" what to do now. hmmmm
If I posted wrong or anything just let me know, I am new at this. Thanks
There is a woman who posts as judy_smile_37 (I think that is right, I always just think 'judysmile" LOL) on the Arthritis Foundation board. I know she has a similar story - lymphoma, RA, Rituxan. I'm sure she would be happy to talk with you!Hey Laura -
You have another option. It's called AP (antibiotic therapy) and some of are using it with great success for our RA. For information, either search here or try www.roadback.org.
Lymphoma is linked to the Epstein-Barr Virus but a lot of other cancers are linked to bacteria.
I know there are a few people here with a history of cancer who hopefully will chime in. I know I'd seen a lot of research on cancer and mycoplasma (cell wall deficient bacteria blamed for these diseases) but a quick search so far and I'm getting NADA. I'll try to come back soon so I can search my files.
Hugs,
Welcome to the board.
Pip
From the Arthritis Foundation board:Laura - Judy also posts she is on Minocycline.
Also, I know she has posted there is a lymphoma board she goes to that has other RA patients. I hope you can get in touch with her, I know she will have a lot to share with you. Take care.
Hi Laura. I have been diagnosed with RA for 2 yrs., but my rheummy said I've had it for much longer. Strangely, I do not have the erosions of joint edges that appear with RA damage. However, I also have severe OA which has badly damaged my joints and, I believe, added greatly to the rapid destruction of my spine from scoliosis.
In taking all the blood tests for RA, it was discovered that I have MGUS. This is monoclonal gammopathy of undetermined significance. This condition is a possible precurser to lymphoma, so I get many blood tests every 3 months. My IgM is high, which indicates MGUS. If it goes over a certain number, we do more biopsies, etc, to try to locate lymphoma. I've been through this once, my hemotologist was certain I had lymphoma, but a very low grade. He was kind of excited about treating me with Rituxan, as, he said, it would put the lymphoma and the RA into remission. But after all the testing, we could not locate tissue proof of lymphoma. This means that the insurance company decided Rituxan was not indicated for me at this time.
But, my rheummy also told me that I cannot, under any circumstances, have any of the biologics, like Remicade, Enbrel, etc, due to the fact that they may be linked to cases of lymphoma. With MGUS already, she advises, and I agree that it would be unwise to leave myself open to a double threat. She did say, however, that Rituxan is still possible as a drug we will use when we need to bring out the "big guns".
I would consult with your oncologist/hemotologist about the biologics. I cannot imagine that they would have you take them, having lymphoma already. I know the doses are different for Rituxan for lymphoma and for RA. But I would certainly ask about it. As I said, my hemotologist was very excited about using it on me when we thought I had lymphoma and RA. Just do some research and talk to your doctors. Ask anything you want to. Your questions are all valid and I'm sure they would be glad to answer them.
We are glad to have you with us
1 I hope your doctors are working hard to put you into remission. My thoughts and prayers are with you.
Hugs, Nini
Thanks so much for the replies. The Dr. says I am in remission, from the NHL but yet there is a spot on the spleen and I am still going for rituxin.
Judy, can you link me up to the lymphoma boards?
I'm Judy. Here is the link to the best NHL message board I have found. http://forums.webmagic.com/ubbthreads/postlist.php?Cat=0& ;Board=UBB2 Also, the best lymphoma information site I know is: My RA started presenting in 1989. Got the dx in 1994. I started with minocyline for 3 years, then tried sulphasalazine, gold, and finally got great relief from enbrel in 1999. I did great until lymphoma in 2004. It was large b cell. I took 6 chop/r cycles. My RA went into remission for about 2.5 years. Then I got cellulitis and my RA got worse than it has ever been. I took some more rituxan in April 2007 and got to RA remission in October. It lasted about a month, now my RA is starting to get a bit more active, but so far only a little. My sed rate is 30-34. Last april it was 93. I was due to take more rituxan last week, but I got a bad cold so I postponed it. Maybe next week. What type of NHL do you have and what treatment did you have? Judy Hi Judy, So glad to hear from you!!! I cannot remember a time I was not in pain someplace in my body. When I was having children the Dr said the pain in joints was from hormones. When I was done having kids the Dr said it was the strain my body went thru while having kids. Then a Dr told me it was fibromyalgia. Tried all kinds of different medicines, when I was on prednisone my aches were not so bad. Forward to 2004... during a rountine pelvic exam when the dr pushed on my abdomen it hurt a lot. She sent me for a CTscan, that showed an enlarged spleen and some enlarged nodes, behind stomach wall. No one wanted to biopsy those. So the first oncologist decided to go right to the bone marrow biopsy....... boy is that a nasty thing to have done. Anyhow he told me all was fine that it was probably CLL and I wouldn't have any trouble until I was in my 60's. I thought, well that's fine...... I have a time bomb in me. So a year or so late again with the pelvic exam and pain, back I go for the CTscan only this time a reaction to the dye and the hospital said no dye ever again. So my reg Dr said back to the oncologist, I say I need a different one as I was not impressed with the last one's opinion. She says you do not have CLL you have lymphoma. I say ok. We watch and wait again until last March I got sick. Thought it was the flu, NEVER dawned on me it was the lymphoma. Nite sweats, cough, raspy voice, my temp was too low. I went to a stop in clinic type thing and the dr there said she could feel swollen nodes and that I should see my reg dr soon. Still not thinking here!!! Well by April I had this awful pain in my back radiating to the front I thought it was a kidney stone, went to ER and the nightmare began. Sorry to go on and on. Tried to make it short. In May I started what my oncologist called RCHOP and had 6 sessions. By the 3rd my pet scan was clear but she said I had to finish the rest because if I stopped and it came back it would be harder to treat. So I did what she said. After it was over my scan in July said things were good. Then in Oct the scan showed a spot on the spleen (the spleen is where it all started if I forgot to say that) so she said Rituxin every 3mos for a year. I asked if the cancer was back or was this maintenance, she said maintenance. Oh I was told mine was non-hodgkins lymphoma stage 3 large B cell. My rheumatologist has not tried me on any of the RA drugs all talk about on here. Some of the drugs people talk about I tried but they didn't help. so glad you wrote. gonna check out your links. THANKS
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