I don't know anything about rituxan, but I was started on 100mg of imuran 4 months ago. I am also tapering pred. from 60 mg/daily tp 15 EOD. I am trying to get off completely. I am tapering much quicker than my neuro would like, but I need surgery and the surgeon won't operate until I have been off pred. for 1 month. My neuro said to be patient,as the imuran takes up to a year or longer for full results. How long have you been on imuran?

Judith

Hi Staci

I had Rituxan several years ago but unfortunately it didn't work for me. Over here they give 4infusions, one a week for a month. Did you have only the 2? Perhaps the doc thinks you are making steady progress now and is hoping it will continue without more of the drug. Do you think you have plateaud or is the improvement still happening? If not maybe you should ask about the dosage. Talk it through with your neuro and explain your feelings. You have a right to understand the decision after all it is your health and you are the one with the symptoms and side effects.
Goodluck!
Ange

Judith,
I have been on Imuran for 6 months. And, my neurologist wants me to wait and see if it will work. But, like you said, sometimes it takes up to a full year or longer to see full results...if it even works. And, if it doesn't, then what? Try another one, right? Wait another 6 months to a year. The problem is that I have been on high dose prednisone for over a year now. And, the side effects from the prednisone are actually worse than the MG. So, it is really a priority for me to get off of the prednisone as soon as possible. The Rituxan is the only thing that has helped me enough to be able to taper my prednisone. After only 2 infusions, I have been able to taper from 45 mg/day to 25 mg/day. So, I don't see the logic in stopping this therapy. I have had basically no side effects aside from some very mild nausea. I think I am going to go against my neurologist's advice and continue the Rituxan therapy. Wish me luck. I will keep you posted.

i totally understand wanting to get off pred. And I also understand why you would stick with the Rituxan if it's working. I am down to 10 mgs of pred.....I sleep so much better, lost all the bloat, and moodiness. What's frustrating is I do feel increased weakness and douvle vision at the end of the day. Have you thought of getting a second opinion? Even doing that can be confusing. I've found such conflicting info, even from the "experts". We are all so different in our mg and how we respond to treatment. But I think we can all agree on one thing....mg can be a real hassle to live with. I'm glad you found something that works. I wish you the best of luck!

Judith

I am on Rituxan and IVIG. I take Rituxan every 4 months. It doesn't work as well as everyone wanted it to, but it has allowed me to get off prednisone for the most part. I actually have to do prednisone every once in a while when I get really bad, but luckily it is a low dose only for a couple of weeks. I would really talk to your neuro. The rituxan does a lot of what the prednisone does, but it is not as dangerous. Basically it blocks the b cells from creating a lot of the bad antibodies. There are fewer side effects and over the long term, it is better to be on rituxan versus prednisone. Coupled with the IVIG, it is allowing my MG and Sjogrens to be managed and I am able to function. I am not great by any means, but I am able to function.

Judith,
Thank you for the words of encouragement. Just hearing that you are down to 10 mg/day and your side effects have subsided gives me so much hope. I am so miserable now, especially with this oppressive heat (I live in Alabama). I can bearly function during the day because the temperatures are staying in the mid to high 90's every day. So, I am basically home bound. I have tapered down from 45 mg/day to 25 mg/day. But, now the doctors want me to "hold" at 25 mg/day for 8 weeks to let my body adjust to the taper. Arghh. More waiting. They don't seem to understand how slowly time passes for us when we are suffering so badly and waiting for things to get better....just a little bit better.

mcangel,
Thank you for your reply. I am glad to hear that the Rituxan has helped you. I have decided to move forward with my infusions despite my neuro's advice to wait and see if the Imuran will work. I think it is much more important to continue with the therapy that is allowing me to taper my Prednisone faster, since the Prednisone side effects are now worse than the MG symptoms alone. I think it is worth any potential risk, and at this point I am willing to take that risk. It is exciting to hear from someone with both MG and Sjogren's that has found a therapy which allows them to taper off Prednisone to the point you are at now. How are your Sjogren's flare ups? Mine have gotten pretty bad since I have started my Prednisone taper. Have you tried any kind of special diet like gluten free, etc. I have found that shrimp cause extremely bad flare ups for me. FYI. Something about the long protein chains. I hate it because I love shrimp. But, I have switched to crab and lobster with no problem. :-) Great to hear from you. Please keep in touch.
Staci

I think I would still be on the prednisone if it wasn't for the Rituxan. My neuro works with my rheumatologist and listens to what she has to say. If she says Rituxan, he agrees. She worked with the doctor who came out of St. Louis who did the trials on Rituxan and MG. Since I also have Sjogren's, it is a good choice to help both diseases. It has helped a lot. I am curious why your doc did not want you on it. It is an infusion and can work with the imuran and help to taper your symptoms. I will get my next Rituxan infusion in July. My Sjogren's flares can be pretty bad, which is why I had to do 2 weeks of low dose prednisone, but that is so much better than 100mg everyday. My Sjogren's is attacking my joints, so I am in pain, but nothing that is too much to handle. The Sjogren's got worse when I got sick with MG. (I have only had MG for a little over a year)

I haven't changed diets, but recently started looking at gluten free since there is research that it can help MG and Sjogrens. Part of the problem with Shrimp is the sodium. Because Sjogren's is a disease that attacks moisture, the more sodium you have the worse the Sjogren's can be. Shrip tends to have more added to it when cooked and already has high sodium, so the added seasoning makes it worse. I am in the same boat with you though. :)

The Rituxan should help with both your MG and your Sjogren's since it is a b blocker. It will def help you get off of Prednisone. Just make sure you watch yourself and do your treatments on a set schedule. We did notice with me, that the benefits were wearing off around 3-4 months, so I do my treatments every 4 months. The norm is every 6. If you feel your symptoms getting worse, call your doc and let him/her know. You may need treatment sooner than the norm.

mcangel,
Thank you so much for the information. I have decided to continue with the Rituxan infusions. And, my neurologist is supporting me in this decision. I am going to get 775 mg IV monthly in addition to remaining on Imuran 100 mg BID and IVIG infusions. I am down to 25 mg/day of Prednisone. But, she wants me to hold at this dose for 8 weeks to allow my body to adjust before tapering further. I am eager to continue my taper, but I have had some pretty severe side effects to the taper: mood swings, excessive sweating, insomnia, increased pain, etc. So, I guess I will have to wait for now. I will get my next Rituxan infusion on Wednesday. Looking forward to it.
I haven't changed my diet yet either. But, I have also been looking in to the gluten free thing. I have read a lot about it. As you know, cooking is quite a challenge for us. Hell, just grocery shopping is just a challenge for us, right? But, I will do whatever it takes to help with this joint pain. My flare ups get pretty severe. I had one about 2 months ago in both knees that woke me up in the middle of the night screaming in pain. And, it took almost 2 days to subside. The problem is that with the MG, anything we take for pain is dangerous because it can worsen the MG symptoms. But, when the Sjogren's flare ups get so bad we have no choice, right? I have to take something to help me function. I have a 5 year old daughter to take care of. And, althought I can't work full time anymore, I still have to be able to get her to school, cook for us, maintain the house, bathe her and myself, etc. And, just that can be exhausting. I'm sure you know what I mean.
I know exactly what you mean about the shrimp thing. I actually read from someone else that on top of the sodium, shrimp may actually contain long protein chains cause joint pain in arthritic patients. Not sure if there is any scientific basis to that. But, I do know that when I eat shrimp, it causes flare ups for me. So, as much as I love them, they are off my menu now.
Keep me posted on the Gluten free diet. If you do it, I may try it as well. Maybe we can do it together. I will do some more research on it tonight since I cannot seem to sleep. :-)
Staci

I had to go slow with my taper. That is actually a good thing. It will decrease side effects going slow. It took me almost 3 months to get off prednisone since I was on a high dose. I am glad you are staying with the Rituxan. One thing to also ask a rheumatologist about is seeing if there is another med you can be on. Mine wanted to put me on an arthritis med (daily pill) to help with the pain and flares. Unfortunately the IVIG is making my liver tests high and therefore, I can't be put on anything else. I take advil as needed, but this isn't exactly really good for me. So my docs are putting their heads together about what else we can do. I know what you are talking about with the Sjogren's and the MG though. Hard enough having one, but both make it more difficult. Do you have to get punctal plugs for your eyes? I am unable to work at all right now. I kept trying to go back to work last year, but would ultimately come out worse than I was before. It has happened twice and I am out again. Doc is not going for the 3rd times a charm spill. LOL. So he is not letting me go back until I am completely stable. Which has yet to happen.

I will let you know about the diet. I meet with a group of other MG people here in TX. One of them has celiac and has to do glutten free. I am going to talk to her about it when we meet for lunch on Saturday.