I have not read all the recent posts, and there has been a lot of discussion of this drug. I would like to ask everyone in the group about what they have been told by their neurologist since the drug has been approved.
Mainly I'm wondering if anyone with SPMS has been told they might be able to get this med. In most accounts it states that the med is approved for RR and PP; but another states that it is approved for RR, PP and SP "with relapses." This seems a bit unclear. I know we are revisiting the discussion erash and I were having about MS being one disease in different stages, but I think that for clinical purposes they still recognize these distinctions.
Anyway I would be curious to hear from anyone about this. If you prefer not to discuss your prescriptions publicly you could message me or email me at redoak313@yahoo.com
Thanks everyone
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BillD999
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Yes I was lucky didn't have any reactions. Also think it helped me recover from my last relapse. Think we are switching because Ocrevus shows some repairing, will get more info next week.
@BillD999, I hadn't heard of Ocrevus for SPMS.The earlier DMDs (Avonex, Betaseron, Copaxone, etc.) were meant for RRMS only but many neuros (including mine) went ahead and prescribed them for people with SPMS, maybe on the offchance that it might help because the drugs hadn't been adequately studied in SPMS.
That might happen with Ocrevus too. There are some people with SPMS who still have relapses, and those are the people you have been reading about, for whom Ocrevus has been approved in some states. My guess is that eventually neuros might prescribe Ocrevus for almost anyone with MS.
I for one probably won't be taking it though. The risk of cancer (and other disorders they might not know about yet) is too great. I've had MS too long for me to have a lot of confidence in a new drug. I felt that way about Avonex and Copaxone, though, and eventually did try them--each for 3 years. I don't know if they slowed down the progression but maybe they did. The whole thing is a gamble because who know what MS might do to us without the drug? It might just sit there not progressing very fast at all even without a drug.
BillD999, it's Fancy1959. I' too, have SPMS and my neurologist is planning on getting me on the new therapy in the next month or two. What I have read on Ocrevus, it has been approved to be used with patients afflicted by both RRMS and the progressive forms of MS. That's us! I can't wit to get on the drug/therapy. If and when I hear more info on Ocrevus I will be sure to pass it along. Take care, Fancy1959.
That is what I heard also BillD999 and Fancy1959 , it has been approved to be used with patients afflicted by both RRMS and the progressive forms of MS.
I have SPMS but unsure whether that's in my docs notes.
Last week my neuro told me I was a candidate. Whether insurance will give me a hard time, I'm not sure. Having another MRI in a few weeks and will discuss Ocrevus again at my next neuro appt in Sept.
So, if Ocrevus works for rr and pp, should it not be effective for sp? Have they figured out the differences in pathophysiology b/w them yet?
Fancy1959 how was the auction? And please let us now how you do with Ocrevus
I have RR and I'm in the CHORDS trial for Ocrelizumab. I had my first 2 1/2 infusions in January & February. From what I heard, at least as far as my neuro is concerned, Ocrevus is/will be prescribed for any form of MS. There are at least 6 other patients at my clinic that are on the trial and the results seem very promising so far.
It was a tough decision to decide to participate in a trial for a new drug, but none of the other traditional DMTs have been working for me. I think if I was in my 20s or even my 30s I wouldn't have been willing to try a new med when no one really knows the long term effects. However, being the age I am and considering my last few relapses, I really felt like it was worth a shot.
I've only had the first round. I have to say that it's working better than I ever really thought it would. I'm not one of the miracle MS'ers that you hear about, but I can definitely tell a difference in the spasticity I had so much trouble with. I think the fatigue is better as well. If I gain nothing more than what I already have I consider it well worth any risk!
So how do you feel about this new drug? I'm on the fence about it , my doc told me about it 6 months ago. Having had MS for 37 yrs. and tried everything + stopped injecting because it wasn't stopping the progress , I've been thinking about trying Ocrevus .
I'm really hopeful about it. I'm enough of a pragmatist (maybe part pessimist, actually) to not get too excited yet. But I love that I feel like my old self again.
I was dx'd 4 years ago but my doctors think my MonSter had been present for a long time before that. I thought that the issues I was having before then were from getting older, old injuries, stress, etc. Nothing I've been prescribed since has made any difference at all that I could tell. It seemed like they made me feel worse.
I don't know what the long term effects might be. I don't think there's any of the possible side effects that are harder or worse than what I've been dealing with. I'm happy to stay mobile and as cognizant as possible for as long as I can and if Ocrelizumab can do that then I'm all in.
So for someone like me with RRMS with a couple of chronic bladder problems that could or could not be related to MS and no other specific symptoms, would this drug be appropriate? Seems with it's possible side effects it would probably be for specific situations. I haven't seen enough guidelines for prescribing this.
itasara .... that's a tough question! I don't know if there's a specific range or severity of symptoms that's considered to be appropriate or not. I know that some of the other people that are participating in the same trial as me have different issues with their MS - ranging from more severe than I've had to deal with to less troublesome than mine.
As for side effects, there doesn't seem to be a drug out there that doesn't have them. I know Ocrelizumab is very new and so there's no way to know what might happen down the road, but I decided the risk was worth it. I'm not as young as I used to be - I know, none of us are! - and because I'm concerned that the small problems I have now could become bigger, it's the right thing for me. We'll see how it all comes out but I'm very hopeful!
I do hope it works out and do keep us informed! At the moment I'm not really looking for anything in specific. I'm just 69 now and I don't know whether or not I'm going to have any problems with my MS. I guess if I do I have to cross that bridge when I get there. I know offhand that my neurologist is not one for taking risk with medications that are not proven. So as I said time will tell!
My neurologist has put me on the list for ocrevus. I don't believe my charts say that I have PPMS but I believe that is my form of Ms. I am male in my 60's,diagnosed at age 58. Have not had traditional relapses and remissions but a steady decline. I see the neurologist next Wednesday. I have talked to Genetech because I will need financial assistance. When I called they already had me in the system because my doctor had done her part and I had to do mine.
I was at my neuro. at the MS center this AM. I asked him about the new med. and he said he usually was cautious with new meds and usually prefered to wait awhile. But several of the staff are attending a big MS conference in New Orleans in May, and we decided that we would both gather info. and then meet again the end of May and discuss this further then.
I am surmising my Neuro would say the same thing, But I had a talk with a rest for this new drug today at the MS walk and she says everyone has been approved financially so far and there are far less side effects than any of the other drugs for MS. I would still like to hear what others say who have first hand experience about it. The rep answered my question as to those of us with RRMS how eligible and she says it is absolutely for all with RRMS type even if doing well. Over all it would be less invasive that injections and a lot less time involved over a year. Worth looking into perhaps?
I have an update after speaking to a nurse in my neurologist's office. I was told that first, there may be an issue with availability. Second, it had not been determined yet who would be a candidate to get Ocrevus. This may depend on factors such as how many other meds a patient has already taken. Third, insurance issues will certainly come into play; this comes back to the issue of how a patient has been classified.
This all sounded very premature but I thought I would pass it along. I will learn more when I speak to my dr directly.
I don't know if the clinical trials have the same eligibility requirements as they are for getting a prescription. Here's part of what was involved for the trial: We had to put together a very detailed timeline of the meds I had been on so far. There were also a list of medications that, if I had ever been on them, would have disqualified me. Because one of the ones that almost took me out of the running was methotrexate (I'd been prescribed it 20+ years ago because of a miscarriage) I wonder if it's the meds that have been used in treating cancer are a concern. Just speculation.....
As I just said, the rep for the drug says all MS patients are eligible and so far she says no one has been denied by insurance. She says it is less expensive then any of the others. Could be but I'm not so sure about that, but it could be.
Saw my neurologist today. Will get the first injection once Anthem Blue Cross gives its approval and subsequent code. Already have copay assistance. My neurologist says to give it at least two years. She video taped me and timed me walking. I did use my walker. She will video tape me in either 6 months or one year to see if there is improvement
Hi Bill, I am expecting to start on Ocrevus in about six weeks, as they want me off Plaquenil for at least a month before starting. It is unclear whether I have PPMS or RRMS, in part due to the fact that I can't have gadolinium contrast with my MRI scans. My neurologist thinks this drug is an excellent option for me, and my rheumatologist wants me on it as well because I also have a connective tissue disease which it is expected to help with. Rituximab is currently used off-label for several connective tissue diseases with encouraging results and while ocrelizumab is being marketed for MS it's expected to be at least as effective as rituximab for connective tissue disorders.
dianekjs, Thanks for replying, I too have been informed by my neurologist that I am a candidate for Ocrevus, (I have SPMS) but we have no time frame yet because of availability & other issues. I read your earlier post about environmental factors & PBC, very interesting. It seems that as research advances more evidence is coming to light about the connection between environment & autoimmune disorders.
I will look forward to following your progress on Ocrevus as we go forward. My neurologist doesn't seem to think they'll have any trouble with availability, at least at this medical center. We do still have to navigate my insurance approval, however.
I suspect environmental triggers play a far bigger role than may currently be realized, and especially in genetically predisposed individuals. Wishing you the very best on your journey - I'll be rooting for you from afar. 😊
BillD999 As far as I know like other drugs. many That I am on are anti seizure meds. Not for MS but my Dr and others use them for pain and balance. Not to mention a couple others that I have prescribed that they are not "MS" drugs. I am looking for the article that stated the SPMS is a progressive form and therefore Ocrevus should be ok for your SPMS. However, It also depends on your insurance company will approve it..... Or you state says yes they have to. Maybe this helps.
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