Hey folks. I've got some exciting news and changes upcoming. If you read my post over at MS Central yesterday, then you know what I'm talking about. My rheumatologist and I have agreed, with the blessing and excitement of my neurologist, to try Rituxan to treat my rheumatoid arthritis.
Coincidentally, Rituxan (rituximab) is being studied as an anti-CD20 monoclonal antibody treatment for relapsing MS. It depletes the B-cells as opposed to the T-cells which are depleted by Tysabri. And just like Tysabri, it carries significant risks.
Here are the results of the Phase 2 trial which were published in the New England Journal of Medicine in February 2008. Trials of rituximab in progressive MS were unsuccessful.
I have some investigating to do in regards to insurance coverage, hospital preference (it is administered in the hospital as infusion-related adverse events were noted during the initial infusion), pre-authorizations, financial assistance from Biogen or Genetech (makers of the drug), and finding someone who has the seasonal flu vaccine as both my doctors' offices are out right now.
I will be receiving a 6-hour infusion on Day 1 and again on Day 15 (which makes up one course of treatment) followed by another course of treatment 6 months later. This is the standard protocol as used in rheumatoid arthritis (which I certainly have for those who are wondering at off-label use).
My neurologist wants me to stop Copaxone for two weeks beforehand and I will continue to use methotrexate which is a requirement for use of Rituxan in RA.
I've been digging into research studies and do like what I see in regards to RA effectiveness. If it helps my MS, that's even better!!!
Of course, I will keep everybody posted on the process and my experience.
Great news, Lisa! BR had a course of Rituxan a year ago at UCSF. Through the help of the MS Clinic there, Genentech Foundation picked up the tab for the drug, and Blue Cross covered the infusion services.
ReplyDeleteThe infusion was pretty painless, and BR had no side effects. He even made a video afterwords to let everyone know how it went.
We'll keep our fingers crossed for you.
Best of luck Lisa
ReplyDeleteI was on Rituxan for over a year. It was the best drug I've been on for my RA.
The MS wasn't the best though--but then again it never seems to be?? So I went back on Copaxone and IV Pred which keeps the RA at bay.
On Monday they will retest my B cells to see how many there are. I was told sometimes the RA just goes into remission, so I will keep my fingers crossed for you!
Please let me know how you do!
Gretchen
Interesting. I hope it serves you well on all fronts! You must take methotrexate? Interesting. Do keep us posted!
ReplyDeleteMy mother has has Lupus and loves Rituxan and methotrexate. They thought she had RA but she actually has Lupus. Imagine that.
ReplyDeleteShe feels better on Rituxan and says it gives her more energy.
I hope it helps your MS as well.
Steve, I watched the video. Thank you so much for sharing that with me. Helps me to know that once the six hours were past that BR got to go home AND looked to be doing great. I just wish that Rituxan was found to be more helpful in progressive MS.
ReplyDeleteGretchen, I had practically forgotten that you had both RA and MS when in fact you are the person who approached me and told me that about herself. :)
I'm truly hopeful that this will help my MS. Fortunately, my RA is not extremely severe and this probably wouldn't be top priority if it weren't for the MS.
I agree that IV steroids really does knock the RA down....very nice when taken but makes other aspects of life miserable. The neuro discussed other options such as monthly Solumedrol, Imuran (but I already use methotrexate), or much less preferably Cytoxan. Lesions are stable but I'm experiencing too much MS break through activity which seems to coordinate with or aggravate RA flairs.
Diane, yes it is indicated to be used with methotrexate. Fortunately I have found methotrexate to be very helpful with the RA (not so much the MS).
Sherry, I didn't realize your mother has lupus. So does mine. Very good to hear that she loves Rituxan and methotrexate. I just have a feeling that this is going to be a very positive experience.
I also have discovered that there are two types of assistance provided. One program in which Genetech will refer your case to a separate non-profit for copay assistance (such as HealthWell Foundation or Patient Access Network) based on financial status.
ReplyDeleteOr the other which is a straight $4000 Mastercard from the drug companies (Genetech and Biogen) available to pay for copays as long as you do not have insurance through a government program (including FEHBP) or live in Massachusetts. I qualify AND my insurance will pay 90% of the cost since it is administered by IV.
This is a HUGE relief on my part!!
I find it so sad that people feel the need to resort to extremely toxic and dangerous drugs when they could be using something which is pretty much free of any complications, risks and side effects, like low dose naltrexone. :-/
ReplyDeleteLisa,
ReplyDeleteI'm wishing you much luck with the new drug and hoping it works well for you with no/minimal side effects! And that's great news about the programs to help cover the cost that your insurance doesn't pay.
Any idea when you'll start?