View Full Version : Rituxan
10-25-2006, 06:40 AM
My rheumatologist has talked a bit about Rituxan. Currently, it's used mostly as a chemo drug for cancer and in some cases for RA. Mayo Clinic is doing some work with it for Lupus. I have stubbon, recurrent pericarditis and pericardial effusion and can't seem to reduce steroid use without another episode. So she's thinking of referring me to Mayo, if they'll accept me as a patient. (I live in Minnesota, so referrals to Mayo are not uncommon.) Has anyone had any experience with Rituxan? I've read some about it, but would like to hear about any real experiences.
10-25-2006, 09:49 AM
I know butterflyRN has used it but also had a problem with her insurance refusing to pay for it afterwards, which is the same situation I had - BC/BS classes it as "experimental" for lupus and won't pay for it, so you definitely need to find out if your insurer will authorize it - it is very expensive.
10-26-2006, 01:13 PM
Thanks for the heads up. I will most certainly check it out with our insurance company.
10-26-2006, 02:54 PM
I found a medical article about the outcomes of some clinical trials involving Rituxan for lupus - if you can wade through the medical jargon, it's pretty interesting - some patients reported improvement even 18 months post treatment. That would be a lot better than once a month cytoxan!
Not sure this will work as a link, but you can cut and paste the address in your internet browser
11-03-2006, 07:46 PM
Just wanted to put my 2 cents in about this treatment. I had it in august 2006 - 2 infusions 2 weeks apart. They gave me a big dose (if I remember correctly 2000ml.
It is important to have the infusion over a longer period of time (3-4 hours). I was also given a big whopping dose of IV steroids to minimize the chance of an infusion reaction.
I had very few side effects - maybe a headache, shocking for me as I normally have nausea with everything I try. My lupus symptoms appeared to be completely gone for about 2 weeks post treatment. Things kind of limped along where I would get the odd joint pain and fatigue but the flares seemed really mini - things would seem to last a couple of hours instead of weeks.
I don't feel that Rituxan has knocked me into total remission like we all hope when embarking on an expensive, experimental journey but its been effective enough in dampening the symptoms that I would do it again. Oh and I have reduced my prednisone from 30mg to 13mg (this week anyhow) but am feeling really sore in the AM/PM. I hope this helps. I haven't posted very much before so am not really sure the protocol, but I will check back to see if you have any other questions.
Good luck to all!
I have been reading your posts about your rec. pericard. I too, have been battling the same thing for the last year. Finally, started Colchicine(do look into this!)in June. (I got into a cardiologist, should have done that a long time ago!) At that time I was back up to 20 mg pred. Over the last year have had recurrent pericard. at least 6 times, and of course, up the pred every time. :x So....now, I have just lowered to 8mg today. Everythng is going very well so far. I have read that pericarditis can become steroid dependant. Google to find all kinds of info about it and the Colchicine. I also take Methotrex., Warfrin, Protonix along with the pred and colchicine. I have also had 4 RITUXAN treatments. That was in April of 05. That went well, but because of the recurrent pericard. I am not sure what to call the outcome. I did not have other Lupus symptoms with the recurrent pericard. I wish you the best of luck!
11-05-2006, 08:13 AM
mdjob and Kimb,
Sorry to hear about the recurring pericarditis. It sounds like things are starting to settle down for both of you? I was just wondering if you have normal heart rates? I had a problem with my mitral valve last year - not sure what collapsed it(lupus or lupus drugs) doctors aren't sure. They successfully repaired the valve (hard surgery though) but my heart has been racing since. Resting rate of 110-140 They don't see evidence of pericarditis but I can't get to the bottom of the cause. It makes me tired and anxious but the beta blockers help.
Anyhow just curious as to your heart rates.....
11-05-2006, 08:46 AM
Has your doctor ever mentioned radiofrequency ablation for your abnormal heart rate? I had this done a couple of years ago because of a history of SVT (inherited problem unrelated to lupus, but cardiologist was afraid it increased risk of lupus heart problems). I can't take beta-blockers because of asthma, and alpha-blockers dropped my blood pressure too low, so my docs recommended the ablation procedure. If your doctor hasn't mentioned it, you might ask whether it would help you.
11-05-2006, 10:04 AM
Thanks so much. I have never heard of radiofrequency ablation but my appt with the cardiologist is coming up so I will mention it. Its good to know there are other options other than the beta blocker (which lowers my already low blood pressure).
thanks again! This forum is such a blessing.
11-05-2006, 10:30 AM
Karen, here's a link to some information about ablation. Depending on your particular medical problems, it might not be appropriate for you, but it's definitely worth asking about.
If the link doesn't work, you can cut and paste the address into your internet browser address bar.
11-06-2006, 12:48 AM
I used to work at Boston Scientific, a manufacturer of RF ablation devices. Their website has info, too. Just go to www.bostonscientific.com and click on Patient Info.
11-06-2006, 04:41 PM
Thanks, Kimb, for your info! I just had an appointment with a cardiologist and he suggested Colchicine. He called my rheumy and she said she'd check with pharmacology to be sure it wouldn't interact with all of the other stuff I'm on. I also don't have a lot of other Lupus symptoms, but enough going on for a positive diagnosis. Both the cardiologist and rheumatologist are still interested in sending me to Mayo, as they feel like they may not have the expertise to deal with this. There is some 'hardening' of my pericardium and they're concerned about constriction of my heart. Anyway, sounds like Colchicine may make a difference, so I hope that's the direction this takes me! Thanks to all for your input.
I have the hardening of the pericardium also. Mayo sound like a good deal. Its good your drs. admit that Mayo may hold more info in you case.
email me through my bio.
good luck on the colchicine!
11-09-2006, 08:21 AM
Well, rheumy said no Colchicine yet. Wants to wait to see if Methotrexate works (if we started something new at the same time, it would be impossible to know which medication was working - the Colchicine or the Methotrexate.) So, reducing prednisone down to 12.5 mg and we'll see how my body reacts. Seems like Russian Roulette sometimes!
I did the same thing. I started Methotrexate first in Feb. and then when my pericard. came back after lowering the pred., in June I saw the Cardiologist and we started Colchicine. The metho has helped. But didnt keep the recurrent pericard. away. Now that I have been on both, I have been able to go from 20mg Pred. in June, to 8mg today. I hope to continue lower and lower.... :D
Hope the metho gives you some relief. :wink:
11-09-2006, 07:48 PM
I've been taking colchicine for about two years now with no recurrence of pericarditis. It made me very nauseated for the first couple of weeks, then I guess my system got used to it. I do have to have liver function tests, etc. to monitor for side effects but so far so good. Methotrexate did nothing for my lupus and made the scleroderma worse, so colchicine was a great choice for me. I was hoping it would help my joints, but apparently it's most useful for gouty arthritis and doesn't do much for lupus arthritis.
12-30-2006, 08:51 AM
I've had rituxan twice. Both times i had a severe reaction and never completed the cycle. However the little I did get improved my CD20 count (not sure what that is but my doc was excited) He still talks about it but has realized that I could go into anaphylatic shock if we try again.
It helped me out a little but it wasnt worth the risk (for me) if it works for you- TERRIFIC