sounds like great news--to have one med that treats both the ms and ra.--the side effects sound horrific but at the same time when i read the side effects of beta seron to my boys 15 yrs ago they were horrified and didn't think i should go on that---we weigh our odds and make the best decisions we can--i'm happy for you and looking forward to seeing how you do--djax59
I have both MS and RA. I was treated with Rituximab a year ago. Two treatments two weeks apart. My RA symptoms as been almost none in a year. The blood test shows that my bone marrow has not recovered and the B-cell count is still below normal. It is starting to recover and the symptoms are starting to re-appear. As for the MS, there have been no noticeable improvements. I have been unable to be re-treated for either because of the low B-cell count. I worry that waiting so long may make my MS worse. It is already bad. Right now I am putting all my chips on the Rituximab. It works well for the RA, but the MS is questionable.
Has anyone else done this treatrment for both diseases? And what are your results?
Hi Melanie!!
I'm not glad to hear that you have both MS and RA, but I'm really glad to meet you as there are more and more of us it seems. At first I thought that the combination was rare, but after meeting so many others online, I know it is not.
I did the first of infusions in late Nov/early Dec and was my rheumatologist last month. I am excited about the difference it has made with the RA and told her that I'm ready to do the next round on schedule which would be late May/early June (6 months after the first round).
We've done my regular bloodwork and it all looks really good. Haven't done any special tests to measure B-cells specifically though. I know that neuromyelitis optica (NMO) patients test their CD19+ B-cells (since I guess that is the indirect way to gauge CD20+ cells).
As I said, my RA is much improved, more than I expected because we thought that it really "wasn't that bad" to begin with (I had blamed MS on some of my RA problems it seems). The MS symptoms seem to be improved somewhat as I need less neurontin during the day, however I am more numb on the right side of my body than I ever have been. I don't know if these 2 things are related.
I will feel confident that the Rituxan is helping my MS if I manage to get through the summer (or the year) without a lengthy relapse. I'm hoping that we'll go ahead and get a new MRI done next fall just to see if there have been changes. Using Copaxone, my MRIs had been somewhat stable even though I was having relapses which lasted months. I'm no longer using Copaxone or any other MS-specific DMD. I am, however, still using methotrexate (25mg weekly).
I hope that the Rituxan does benefit your MS. How are you doing by the way with your RA and MS?
Hi, Thanks for the reply. I went to a conference in Portland OR., and one of the specialists said he sees the ms/ra combo in about 2% of his patients.
My RA was getting bad last year for several months before I had the treatments. They worked immediately, and my RA has been next to gone this past year. Recently It has slowly crept back. It comes and goes. I was on schedule to repeat the treatment last November, but they did do the special b-cell count test and found the count to be too low to repeat it at that time. I repeated the test recently and still too low, but starting to approach normal. I am due to repeat it in another month.
I've had MS for about 13 years now. It has slowly progressed year to year. I walk with crutches for short distances. It is chronicalically painful. I take full dose of gabapentin daily. Lots of other ms symptoms that are always present. It really is not a fun disease!! Not that any are, but If I had my choice.............
I'd skip over this one. It was not in my plans! For now I am living day to day trying to stay balanced, literally!! Falling is something I am very aquainted with. It's like walking on a balance beam at all times.
Enough about me, let me know how the next round of Rituxan goes for you? Getting it approved thru insurance is a hassle, but thankfully it is except for my deductible (which is way too high for my liking), but I'd rather be pain free than rich! It allows me to concentrate on the MS symptoms, which are plentiful: )
Take care. Melanie
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Just keep us posted
sherry/smomdukes
This is exciting news — for the RA community, the MS community, and especially for you!
Sounds good. As momdukes says, please keep us posted.