Has anyone started either of these 2 new drugs? Back in Feb when I told my neuron that I didn’t think Ocrevus was doing anything for me, he told me to give it one more infusion which I did in April, it was my 3rd full dose. He said 2 new meds were coming out within 6 months, which they obviously did, and he thought I was perfect for either of them. I see him in June and would like to start one, but there’s not too much out there as far as patient reviews, except for the usual hype from the manufacturers. Plus I’m sure Medicare will make us jump thru hoops to cover it at almost 100K a year, and for what? Ten lousy pills? Absolutely insane.
Anyway, any input is appreciated...thanks!
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All7
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I have been doing well on Ocevus for 3 years but was glad to see these new drugs approved in case I need to change DMTs in the future. Gilenya and Rebif didn't work for me and being JCV positive limits my choices.
I am hoping the Ocrevus continues to work a couple more years so there is time for these drugs to get more of a track record.
Interested in hearing how people feel on these medications!
I've been on cladribine (generic form of Mavenclad) for about 3 years. I really liked taking it - no side effects or dose reactions. It's only a few doses at home within a year, then you're set. It's meant to slowly reconstitute your immune system into a less reactive one. Studies have shown efficacy at 10 years in about 1/2 of patients. FB has a Mavenclad for MS group, where people from Canada & Europe have been taking it for a year or 2 to get info.
Haven't tried Mayzent, but it's similar to Gilenya.
Al17, how many MRIs have you had since you started taking ocrevus.? Ocrevus is not a DMT to offer immediate results or significant changes quickly in your MS.. It is designed to stop or just slow down your disability from advancing. Honestly you have given it no time to show you what I can truly do. The best and only way to decide if it's doing its job is to monitor your MRIs to see if you're having any advancement in your MS lesions. I've been on ocrevus now for 5 infusions and since I have started it back in 2017 none of my three MRIs have shown any advancement in my MS. I have no new lesions, no enhancing lesions, and absolutely no changes in my MRIs as related to my MS lesions. This is the primary and only way you can tell if ocrevus is really working for you. Ocrevus is not designed to cure your MS. There is today no cure for MS. Looking for that quick fix is unrealistic as there is no quick fix for this dreaded monster we live with to date.
If you jump around and do many different dmts it's very hard to get a handle on your MS unless of course you have a big exacerbation, MS flare up., or noticeable disability advancement.
I am not familiar with the two new medicines you have asked about so I can't offer any opinions about them. I just want you to think long and hard before jumping from DMT to DMT. You have to give any DMT time to do its job unless you have reasons to know it's not working such as disability advancement Etc. I have been on four different DMTs since 2014 and this is the first and only one that has stabilized my MRIs. Having no changes in my MRIs now for almost 2 years is it true victory for me in the first time this has happened since I was officially diagnosed in 2014. I only wish that this DMT, Ocrevus, had been around when I was first diagnosed. If it was, I do not think I would have accrued the disability level that I am currently struggling with.
Please think long and hard before jumping to another DMT unless of course you are noticing advancements in your disability level. A little bit off topic but I hope this helps you to consider the new medicines versus staying on your current medicine Ocrevus. Until we speak again please take care and remember together we are stronger and I would like to think smarter! LOL! Fancy.
We have a lot in common! I was diagnosed in June 2014 and was on Gilenya for 6 months before progression the Rebif for a year before progression. Was lucky to be a candidate for an Ocrevus trial and have been on it for 3 years now. My MRI didn't change a whole lot on Rebif but my symptoms did so we switched.
My symptoms have continued to get a little worse over the past three years but much slower than in the past. It is possible I have ppms rather than rrms. I really wish there was a definitive test to diagnose the type of ms you have. I plan to stay on Ocrevus until I have a significant change.
While I appreciate your taking the time to respond to my inquiry about the new meds, there’s a couple of things I don’t quite agree with. I’ve had MS since the late 80’s. Started on Avonex in the 90’s, switched to Rebif after many years, and stayed on Rebif until 2014. In all of that time, I was non-stop...working, always running around, traveling, raising kids, enjoying grandkids, and very few exacerbations. Do I think the Avonex & Rebif were the reason? Probably, but who knows really. My once a year MRI sometimes showed active lesions, sometimes not. My neurologists over the years have all said the same thing. You can show lesions and have no symptoms or have symptoms and have good MRI’s. One is not dependent on the other. I have noticed a definite downhill progression over the last 5 or 6 years. When I stopped Rebif because neither I nor my neurologist felt it was doing anything for me any more, I tried copaxone (couldn’t tolerate it for long) and then gilenya. Still I progressed downhill. And MRIs showed very little difference. Now I’m on Ocrevus. I’ve had 2 MRIs since starting. No significant difference. And yet I continue to progress. So, I’m sorry, but to say I’m not giving Ocrevus time to do what it’s supposed to is quite honestly, a little insulting. I’ve gone from RR to SP, Ocrevus is more for RR. I’m not there any more. I’d hoped at least to maintain my baseline from when I started a year and a half ago. I haven’t. I am very pro-active with my disease. I’ve researched and taken my time with my docs to make the most intelligent decisions. I go to PT and do the exercises every day at home, I do OT because I’ve now lost most of the feeling in my left hand. I’m hit with fatigue each and every day, I’ve had my feet turn into blocks of cement and my legs are shaky. I often use a cane and I have a scooter for times I know I can’t do a lot of walking. I’ve had hand controls installed in my car. I’m not stopping. I may not be able to do everything I used to, but I have a life to live and I intend to do that with whatever modifications it may take. I’m very well aware that there is no “quick fix” for this monster. I’m not looking for any quick fixes. But when a new, hopefully very promising med finally comes out for SP, and my neurologist is saying I’m a perfect candidate for it, then hell yes, I’m going to switch and try it. Why wouldn’t I ??
I’m thrilled for you that Ocrevus is helping you. I hope it continues. This is a maddening disease and we all have to deal with it and treat it in whatever way will be the most beneficial for each of us individually.
i am so with you on this...rrms since early 90's now spms and my symptoms are almost exactly the same as yours. been doing ocrevus and granted mri's have been stable but the slow decline is not acceptable. i too am constantly reading and researching trying to see if mayzent is the right move for me but i'm looking for some reviews...maybe its too early. ocrevus is indicated for rrms and ppms not sure what to expect being that i am spms
I have an neuro appt on 11/13. Dr had told me he hasn’t seen any benefits to Ocrevus until 18 months - 2 years. I hit the 2 yr mark a week ago with my latest Ocrevus infusion. I believe it’ll be mayzent next. He seemed to think that would be the best course. It’s supposed to be more effective for SPMS and those transitioning from RR to SP which seems to be where we fit. Like you, I’ve been looking for some (non-pharmaceutical !) reviews, haven’t seen much.
one year on ocrevus before that 2 years on rituxan which almost the same...my next ocrevus is 11/19 and appt with neuro in december. mri's have been stable. i just want something that might improve any of my symptoms...so frustrating
I wish I could tell you there was something that would improve symptoms, but honestly I don't think that med exists. Ocrevus was hopefully going to help us be somewhat stable and not progress...
I have not really heard much about these 2 drugs but I am praying for you, just remember that our MS is different from any body else's & the drugs we take react differently for each of us. Hope you find something that helps. Mary
Thanks Mary! It’s such an unpredictable, crazy ride through life when we are saddled with this. But we keep going. It could always be worse. Some people have much heavier crosses to bear than I do and I always keep that in mind...
I have been waiting to read from any of us that other people have heavier barriers. This is very true. Yes ms is a daily debilitating disease for life. Each mser is unique. The wide range of symptoms, pain, severe pain, advanced rare symptoms, cognitive dysfunction, minimal active daily living function, etc., truly limit us. However, we need to keep an open mind. We have our tribulations daily. But, ms is number two on the list of serious illness and cancer is number one, killing all the time. I am grateful I am not dying from cancer. I have advanced active spms with many problems. I try everyday and am grateful my illness is not cancer in hospice. Please try to keep positive attitudes.
You hit the nail on the head there. I have said for years that life is a challenge add MS it's a bigger challenge. Then add all the other things that happen & just makes it a bigger challenge ... WOW!! I'm tired now. Mary
I am being prepared to start treatment with Mayzent, generic is Siponimod. I have had an EKG, blood test - testing genotypes - I think to determine the amount of mg I can take and pending eye exam. My ms specialist put me in the case study. I signed the numerous paperwork my specialist filled out. I believe the genetic blood test results are ready approximately 4 weeks later. The eye exam will be done very soon. I should be able to start treatment after the genotypes are complete. Also financing is being authorized now with all parties involved, including the manufacturer. I was under the impression that the monthly cost was approximately 44,000. Annual cost around 528,000. I also had a phone call assessment with the manufacturer. I do not know the side effects and I would not be surprised if the first patients taking Mayzent will be creating the side effects. Interesting thought. I should be able to start treatment in approximately 2 weeks. Hope this information is helpful. I also hope this med slows down the progression of my active spms. It's been a long time since I have had a main ms med work for my benefit. I trust my specialist and I know he is truly trying to help me. What more could I ask for. He is one of the best ms specialists and really cares about my wellbeing. Have a great day.
Thanks so much for the response. I wish you, as I’m sure all of us on this site do, the very best of luck with this treatment. If it’s worth anything, when I asked my neurologist about what I’d read to be some potentially nasty side effects, he said he truly didn’t think the side effects were as bad as some of the other treatments already being used. I’m hoping to start the testing for it in a few months.
Please keep us posted as to how you’re doing, and again, thanks....I’ll be cheering for you!
Have you started on the Mayzent yet? How are you doing and how much did it cost? I'm on Medicare so I know I can't get help from the drug company. I have help now from the Assistance Fund, so I hope they will cover this drug like they have my Gilenya.
No, I haven’t started yet. My neuro wanted me to go for 2 yrs of Ocrevus first. I hit the 2 yr mark a few weeks ago. I see neuro 11/13 and hopefully I’ll be starting the mavenclad or mayzent soon. I’m on Medicare as well, they’ve stopped covering even Ampyra!
Keep me posted if/when you start it...and best of luck with it...
What a lovely response. Thank you very much my new friend. I will keep you posted. Have a great day and God Bless.
Just as a side note...I saw this online recently, cut it out and put it where I can see it every day.....
"I don't know how my story will end, but nowhere in my text will it ever read "I gave up""
Giving up has not entered my mind. Why would I do such a selfish thing. Life is a gift. I respect life, even disabled and I will live within my capabilities however limited they may be. God Bless.
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