Moving to Rituxan from Tecfidera

[xpsychiatricmd]

I have been battling MS since 1999. Finally got diagnosed with SPMS. I have been without a spleen since 1974 due to trauma. Going for Rituxan from Tecfidera. Any tips or advice from those who have tried Rituxan? I know that we have to be weary of severe leucopenia and hepatitis B antibodies.

[Anonymoose]

Hi xpsych,
I don't have any solid advice but if you are doing rituxan the normal way, it doesn't seem like you should have many problems. I *think* the initial worsening of symptoms is due to inflammatory fallout from the B cell kill. For me, Benadryl continued to dampen that effect for several weeks. So, if it gets to be too much and/or you are afraid you are getting worse maybe try a Benadryl? I found it comforting that the noise could be quieted and that permanent damage wasn't accumulating. That sounds like a tip but I'm too unsure of it to say you definitely should do it.

I hope more rituxaners sound off. It's far too quiet around here. Good luck!

[xpsychiatricmd]

Hi Anonymoose, thank you for the advice. Will continue to post about my experience with Rituxan. The Oncologist, who does the infusion likes doxepin (Sinequan) over Benadryl. It will be good to have Benadryl on hand. What dose of Benadryl you use?

[Anonymoose]

I took 25mg Benadryl and 150mg ranitidine (blocks a different histamine) 2x/day for 4 days starting the day before infusions. Before infusions the nurse gave me 25mg Benadryl and solucortef (dosage??) via iv. After the 4 days of prescribed meds were over, I would occasionally take 25-50mg Benadryl mostly for reassurance as my reaction wasn't terribly uncomfortable.

Do you have your infusion scheduled yet? Have you seen the current nih study for spms? They are implementing a bit different protocol than the ms standard and I suspect it might produce better results. (I don't know that I would do a 50mg intrathecal injection though. 20mg was quite enough for me and the maximum tolerated dose is 25mg...at least that's what I've read. People tend to get painful buttock and leg cramps with higher doses. Doesn't sound fun to me!).

[xpsychiatricmd]

I am scheduled this Monday. Need to check on the blood work first though. Thanks for the reference.

[xpsychiatricmd]

To all,
False Start! Went today for my first infusion and found out that Aetna did not authorized it as Rituxan is not FDA approved for MS.

[Anonymoose]

Sorry to hear that xpsych. I had to go OoP for it but it seems like you could appeal since you've been through other dmds. Otherwise, Rituxan can be had for about $700/100mg plus infusion meds/nursing fees or you could try the Biogen/Genentech assistance program if you fit the income requirements. I know they offer assistance for cancer patients but I'm not sure if they still do it for ms.

Good luck!

[xpsychiatricmd]

Got this late, didn't check earlier (my bad). Thanks for your reply. Will discuss it with the MD's.

[msmything]

Hi Rituxan folks, I would LOVE to swich to this drug. I was on Tecfidera, and had bad skin reactions, it started up an old auoimmune disease that has been quiet many years called pemphigus. It's really a pain in the neck. I try to exercise in the pool a few times a week, but having open lesions from pemphigus is gross for me and others I'm sure. I wish I had a full body suit.
Anyway, miracle of miracle, Rituxan is now being prescribed for pemphigus! Unfortunately, it's going to be a dance with my insurance company anyway, as I got a VERY restricted medicare supplement as far as docs go.
Can you folks tell me how you went about getting prescribed this? right from the neuro?

[centenarian100]

Hey guys. I'm sorry to hear that some of you are having trouble getting rituxan in the United States.

Unfortunately, pharmaceutical companies would rather make more more on new drugs such as ocrelizumab and ofatumumab (other anti-CD 20 agents) than go through the approval process for rituxan.