Rituxin

[Chris]

So here I am on plaquenil, methotrexate AND Ivig. I am feeling almost "normal" and very grateful for the meds and how they are working for me! My neuro and rheumy spoke and agreed they want me to try Rituxin because my Cpk ( muscle enzyme) levels won't come down?!

The thought of another treatment is overwhelming  especially since I feel well!
Anyone try Rituxan!?
Thanks
Chris

[Ripvanann]

Oh Chris! Wish I could help! I thought that Rituxin was another brand of IVIG other than Gamaguard!! Oy vey! I'm sorry! I know that there are others here on it and I'm sure that they'll chime in. Sorry I'm a boob when it comes to this! I do hope that things work out for you though!


Grace and peace,

~Andrea

[DryGuy]

By normal do you mean sicca is better as well?  Rituxan is one of the only drugs shown to improve sicca symptoms. I'd take it if someone offered it to me, I understand there are a lot of side effects. An elevated CPK can lead to kidney damage which is obviously very bad. Sounds like both your docs feel benefits out weigh the risks and they pre medicate you as well to prevent side effects.

[Kdmamm]

I just took my first treatment of rituxan today. I go back in two weeks for second treatment.

The treatment went well. I will admit to being a little nervous. I was premedicated with benydril, a steroid and Tylenol.  I killed the battery on my phone! It took about 6 hours. The next treatment should only take 3-4 hours.

I had a great nurse.  She was great with the patients, understood where I was and my concerns. She took time to explain everything and answer questions.  She was a big part of how smoothly the day went.

No reactions, no nausea.

This was not bad at all- time consuming.  Gave me a chance to sit in a comfortable chair and drink coffee.

Kdmamm

[gurs]

To me, if your feeling well, not sure if I would do it just yet...think about it.
I had several courses of it over the years, and not sure it did anything. It made me drier if anything. There is tons of side
effects and precautions...I had some major issues because of my low immune system/t-cells..everyone is different. I haven't
heard of any really good outcomes with it? who knows? its really a gamble.

Nice to hear someone is feeling better.

[Chris]

Thank you all for your replies!
By feeling better, I mean the pain and fatique is so much better now. Also the numbness and tingling.
Dry eyes and mouth were never too horrible for me. I still have mild symptoms of this but can live with it !
I was so eager to try the Ivig because I felt so terrible but now to try a new med, not so sure....

[cccourt1942]

I don't know what the meds are for?  Do you have immune deficiency?  If so did you also test positive for SjS?  All I know is what I learned from this forum.  Elaine can't get a SjS+ due to the immune deficiency.  Do you have Non Hodgkins Lymphoma?  Are they using this very strong drug for what dryguy notes:  sicca symptoms?  Seems like strong meds.  But hey...not only am I not a dr., I don't even play one on TV!!    Just seems likes strong stuff for someone who feels well.  Good luck Chris.  And have a great day.

[Chris]

Yes I did test positive for Sjogrens, myocitis and SFN .
Ivig is for myocitis
They want to add Rituxin because my muscle enzymes levels won't come down. 
The Ivig has improved my immune system which is an added benefit!
I do think the combination of all the drugs and IVig are helping with my pain and fatigue.

[warmwaters]

Another Sjoggie, Julia, takes Rituxan. Her blog is "Reasonably Well", and she talks quite a bit about the ups and downs of her experience. I found it helpful.
http://reasonablywell-julia.blogspot.com

[Suslew]

I give rituxan a big thumbs up for reducing fatigue and joint pain.  Doesn't have much effect on dryness.