Anyone with SPMS on Ocrevus?

[erash]

My neuro said its the only current DMT option for me if I choose but upon discussion of its effects in SPMS, she did not paint a rosy picture of its benefit at this stage. "A few have good results, most no benefit." 🙁

[Iona60]

Interesting. Haven't seen that reported.

[erash in reply to Iona60]

She was relating her clinical experience (which I highly respect but realize it's Limited to her experience which is why I'm asking). And SPMS is very difficult to define since MS is really on a continuum.

[KC0808]

SPMS I'm labeled with and I'm on Copaxone I'm wondering why? See neuro Monday will be on my list of questions.

Why is Ocrevus your only DMT option? if you don't mind me asking.

[erash in reply to KC0808]

The others are not indicated for SPMS due to their mechanism of action

[suznj325 in reply to KC0808]

I was on Copaxone from first dx in 2001 until transitioned to SPMS in 2013. Neuro said no need to continue Copaxone. No new lesions--also no R&R. 'Just' a slow progression.

[KC0808 in reply to suznj325]

Thank you for the info good to know for when I see my neuro.

I wish you the very best

Take Care of You

KC

[dianekjs in reply to suznj325]

suznj325 , erash , unfortunately, the slow progression seen in PPMS and SPMS is usually accompanied and fueled by the development of new lesions over time. Ocrevus has shown effectiveness in slowing or halting that progression by inhibiting the occurrence of new lesions and associated loss of brain volume. Your neurologist is correct that Copaxone may not be as effective in progressive MS, but it’s hard to understand why he or she wouldn’t suggest transitioning you over to Ocrevus. Is your neurologist an MS specialist? If not, I’d encourage you to get a referral to one for a second opinion, it can make a huge difference in MS care and the stakes couldn’t be higher. My specialist, who directs the MS clinic at a major U.S. medical center, told me that he could pretty much guarantee that my PPMS and disability would steadily progress with no treatment, but that things had a chance of holding steady or even improving on Ocrevus. The research on this drug does appear to back up that claim. Note that while I am officially diagnosed with PPMS, my doctors have considered that it could be SPMS - my onset a few years ago was atypical. Best of luck to you. 🍀😊

[erash in reply to dianekjs]

dianekjs would u b willing to share that atypical onset? Thanks!

[suznj325 in reply to dianekjs]

thanks for that information. I do see an MS Specialist @ an MS Clinic, who is very well respected in the MS field... having said that... I have an appointment to see a new MS Specialist @ a different MS Clinic... because I want a second opinion about options, progression, etc. Everything I've read about Ocrevus says it's for RRMS & PPMS... no mention of SPMS. I've had no new lesions in 5+ years--but continued slow progression. It's frustrating. I find more information on forums, such as this, with people who HAVE MS...& therefore can speak from experience... than I find reading from the actual drug manufacturing & their propaganda!! (IMHO😊) Thanks again.

[greaterexp]

I’ve heard or read that the mechanism by which Ocrevus works may not have the dramatic results for SPMS that it does for RRMS, but still slows the progression. It seems very early to know for sure, but I wonder if it may be worth trying.

I wish you well with your decision. I’m still considered RRMS, and I’m thinking hard about Ocrevus.

[erash in reply to greaterexp]

I reread the email from my neuro. she differentiated true spms from spms with inflammation and said the latter had had some limited benefit

[greaterexp in reply to erash]

I’m afraid I find some of the information a little confusing at times. Hmmmm...

You’re a smart cookie and will make a good choice. Let us know what you decide.

[suznj325]

This is SO timely!! I just had an appointment with a neurologist (not my regular MS Dr) who asked me if I take anything for my SPMS. I don't. He suggested I speak to my MS neuro about Ocrevus. He has MS patients on it & they're having good results... he also stated it's the only drug FDA approved for SPMS. I have an apptmnt the 18th & will def. ask her about it. She's been reluctant to have me take anything due to adverse side-effects... which is also my concern.

[erash in reply to suznj325]

I think it's approved for RR and progressive MS (it does not specify SPMS).

[dianekjs in reply to erash]

You’re correct but many, if not most, MS specialists are prescribing it for both progressive forms of the disease with encouraging results. My doctor has patients with all forms of MS on O now and is really quite impressed by what he’s seeing so far. He is particularly interested in getting the next set of MRIs from the patients that started the drug soon after it was approved, but has said that clinically “no one’s getting worse and quite a few are seeing improvement.” Sounds good to me! 👍🏻

[erash in reply to dianekjs]

Curious, what is he hoping to see on the MRIs? My MRI has never changed in 12 yrs X diagnosis. Is he specifically looking for decreased brain atrophy or reduced lesion burden? Thanks!

[dianekjs in reply to erash]

Yes, both - as well as stability, as I understand it.

[suznj325 in reply to erash]

same here, erash I was dx in 2001 & in that time, 2 new lesions, presently inactive for over 5 yrs.

[Kenu]

One of my best friends has SPMS and has been on Copaxone for 10 years and has stayed stable 👍. Has had SPMS for twenty five years and was on Avonex prior. I know my neurologist says that no one is sure that the DMT’s don’t work and long term is unknown for use as we get older. She has actually improved a little when I visited last week. She can transfer herself from wheelchair to toilet 🚽 and back, also can transfer from 🛏 to chair 👍 Still needs help into bed. She has not been able to do this for ten years 🙏👍. She is 70 years young. Think positive and move on 👍🙏😁🐾. Ken

[tnolan2006]

Here's a post from a MS clinician, where he advances his views on this topic - MS is one disease. Progressive forms of MS show inflammatory activity: multiple-sclerosis-research...

[erash in reply to tnolan2006]

Great blog! Thanks for posting. How do we sign up for the blog? I didn't see a sign up? Thanks! Again

[tnolan2006 in reply to erash]

There's a follow by email box on the left-hand side of their home page on my laptop.

They have a ton of info on drugs, clinical trials, immune system biology, their views on the latest research, etc. They post daily and you can search the site too.

After following their stuff for a few years, I feel that I know a lot about MS. I was able to work with my neurologist to prescribe both simvastatin as a possible neuroprotectant and off-label cladribine to reset the immune system. I read from lots of other MS info sources and I think this place is best. They have their own points of view, sometimes controversial and different from what has been widely advanced. They have a good culture of scientific doubt.

[suznj325 in reply to tnolan2006]

Thanks SO much for posting the link to the blog! WOW! I'm fairly certain this has become an 'MS Research' day at my house. I'm curious to know how YOU'RE doing with what you're taking?

[erash in reply to suznj325]

me too tnolan2006 ?

[pamgarner]

I have spms. My first treatment of Ocrevus is Monday the 16th. I"ll let you know. My neurologist told me I would not regain anything I have lost, but my old medicine betsesron stopped working, I have new lesions on my brain,so I am on a train ready to de-rail.Right now I just need to stop it,I am getting progressively worse, so here goes! I'll let you know

[erash in reply to pamgarner]

wishing u the best! yes, please keep us updated

[suznj325 in reply to pamgarner]

pamgarner sending you positive energy for the 16th! I hope it goes well for you..& yes, please keep us posted!

[Yooper]

I have been on it for a year with no results. Weaker, if anything. Still in the stage of deciding whether to stay on it or not.

[erash in reply to Yooper]

Whatever your decision is I hope you’re feeling better🌈

[suznj325 in reply to Yooper]

Yooper What 'form' of MS so you have? Sending you positive energy!

[Yooper in reply to suznj325]

I was initially diagnosed with PPMS and did 4 treatments of Novantrone. I was diagnosed in 2004. Years later the neurologist changed it to SPMS because I was only getting a little worse yearly. I did Copaxone for about 10 years. My last MRI showed some of my lesions had gotten substantially larger.

[Linda3579 in reply to Yooper]

I’m right with you. I’ve been on O for a year and getting weaker. My neuro is encouraging me to stick with it for now.

He said to give it more time, as there have been lots of good results.

[Yooper in reply to Linda3579]

I am thinking I will stay on it for another year and then have a MRI.

[Jackjosh]

I dont have spms that i know of o have rrms and my nero also said ocrevus is my only option also. I am really nervous. My nero said it should help with aggressive ms

[suznj325 in reply to Jackjosh]

I hope the Ocrevus works for you, Jackjosh

[kymrob91457]

Hi. I have SPMS and yesterday I had my 1st half infusion of Ocrevus. Everything went well. My Nuro said that if it's good for RR and PP MS, it would also have the potential of working for SP. I need to slow this Ms thing down. I've had it for 32 years, but have been getting worse faster, as I get older. I have also been on all the DMD, and Tysabri was probably the best one, but after being on it, the fear of PML made me go off it. I'm hoping Ocrevus works! Good luck with your choices. Oh, if you have any bladder problems, make sure you bring a change of clothing with you for you're infusing! All that fluid made me have to pee a lot!!

[suznj325 in reply to kymrob91457]

Kymrob91457 - I certainly hope the Ocrevus is a good option for you!! 32 years is a long time... your fear of Tysabri is the reason my neuro refuses to prescribe...& I'm ok with that!

Especially thankful for your bladder advice! 😊

[erash]

Thank you for the bladder advice 👍

I hope it (Ocrevus) helps you 🌈

[Kitsey]

Hi erash! I have been using Rituxan and have not had any new or enhancing lesions. My neurologist prefers Rituxan over Ocrevus. Could that be an option for you? I got the drug free through Genentech sine my insurance wouldn’t cover it. I’m on Medicare now and will have an infusion soon! I hope this might help you as well.

[erash]

Hi @kitsey

I will discuss R vs O with her

She is not saying I can’t start on one or the other but just that with secondary progressive MS my expectations need to be realistic

[suznj325 in reply to erash]

erash it appears that you & I are on a similar path! I'll be anxious to hear how your journey continues. My neuro said almost the same to me... I thought if I had the MRI's (the actual film!!) I could see the location of the lesions, study that section of the brain, understand what was happening with me, & figure out what to do about it! (just a wee bit of overachieving OCD going on🤣🤣) She gently interrupted my theory to remind me that the lesions are many...& everywhere! *sigh*

[erash in reply to suznj325]

We do sound like we are cut from similar molds😜

[erash]

Hi @kitsey

I will discuss R vs O with her

She is not saying I can’t start on one or the other but just that with secondary progressive MS my expectations need to be realistic

[ShelliHinkley]

I have SPMS and had my first infusion two weeks ago, next one is tomorrow, then in six months! I switched from Tysabri infusions which were every 4 weeks for 2.5 years (and many other MS meds over the years). MRI’s appeared to be worse after Tysabri, but the machine took more detailed pictures so maybe or maybe not. Decided it was the right time to try Ocrevus. I tolerated the first infusion well. Here’s to hoping this one works 🤞.

[suznj325 in reply to ShelliHinkley]

I hope the Ocrevus works for you, as well. Please keep us posted!

[Linda3579]

I have SPMS and have been on Ocrevus for a year. I have been getting weaker the last six months. My neuro said the newest data on O has been really impressive. He has encouraged me to continue with the infusions. Who knows, maybe I would be much worse without it. There are so many

unknowns with this crazy disease. This is always such a big decision. I wish you the best. Linda

[erash in reply to Linda3579]

Hope things start to turn around for you 🌈

[Linda3579]

Thank you! 🙏

[ellennyc]

I have SPMS and switched to Ocrevus last December. I thought I noticed worsening of my symptoms afterward, especially evening leg spasms, but my neurologist and I couldn’t be certain there was true cause and effect, so I went ahead and got my second infusion in May. The same day, I was beset by violent spasms starting late afternoon and continuing through the evening. I got them every day, sometimes preventing me from even lying in bed, much less sleeping! I got so desperate for relief that I went back to a physiatrist associated with my neuro’s MS department at a major NYC hospital. He suggested a baclofen implant; I looked into it and even met with the surgeon, but fear of the process made me decide to exhaust all medication alternatives this summer. Thank God I did that! I kept a detailed journal of medications, times of day ingested, and spasm recurrence. Lo and behold, a drug forRestless Leg Syndrome actually forestalls spasms if I start taking it early enough in the day! I mean THE SPASMS NEVER HAPPEN or they are lessened so much that they don’t get in the way of my doing virtually anything!! It’s a miracle, truly!! When I told my neurologist, she said that patients “often don’t get that result,” but she had never suggested it might work for me, and the physiatrist was pretty surprised too, though he was the one who prescribed it. Go figure!! Anyway, I now start taking ROPINIROLE at 3 pm, again around 6-7 pm, and again at bedtime (11-12 pm). THIS IS GIVING ME MY LIFE BACK, so I want others to ask to try Ropinirole to see if it can do the same for them. Let me know the results, please!

[Barb_28]

I have had 3 Ocravus treatments and I can tell that I am no longer "declining" but thought it would be better. I was on Aubugio but keep having "issues". I am going for my 4th treatment in a month and will determine if it is worth the $$$ although I do have insurance. Best of luck deciding....everyone is different.

[erash in reply to Barb_28]

Glad u r getting some benefit. Do you have a large co-pay?

[rlh1974]

erash Hi! I am SPMS and my current neuro, My new specialist and the Mayo Clinic have all not prescribed it for me. I have waited a full year since it came out to watch and see. Kinda like you never buy the first model year of a new car. Let them work the bugs out and buy it the second year of production. (HAHAHA!) Anyway, I am not on it and if it actually could slow mine down or even back it up a tad, I would give anything to be on it. I am literally rolling down hill like a car out of control. Also, none of the above mentioned Dr's haven't really given me a reason as to why they have not put me on it, but I do know that all 3 have slowed their roll so to speak on prescribing it. Also, I have not gotten an answer as to why.

[erash in reply to rlh1974]

I have a neuro appt in a few weeks and plan to ask more as I am also that car rolling down hill out of control. There are def. Docs on the web still really excited about Ocrevus for all forms of MS.

[rlh1974]

erash One more thing. My Neuro I have been seeing since I was DX'd doesn't paint a rosy pic either. And again, no reason as to why.

Rob