SPMS Meds

[Ikeeptrying]

Is there any medication to halt progression of SPMS? I hate to just let it get worse and worse.

[greaterexp]

I haven't heard of any, although it seems I read something about someone who had transitioned to SPMS using Ocrevus. I just read this:

nationalmssociety.org/What-...

and this:

multiplesclerosisnewstoday....

[Ikeeptrying in reply to greaterexp]

Thank you. I appreciate the links.

[ssdw1958]

Has your doctor talked to you about Ocrevus I know it’s a new medicine but a lot of people here are on it, I am taking it I know that it has not been out there that long but they do say it will arrest the disease. Well you have to figured that you need take a chance this disease has come out of the blue i have to find away to take back my life from

MS (monster ) it is all up to me, you, us to try any way to take our lives back so we are the boss again

I don’t know what has gotten into me but I’m sick and tired of this disease taking control.

[Ikeeptrying in reply to ssdw1958]

My doctor said Ocrevus not indicated in SPMS. He's the original Dr. No. Is the Ocrevus helping you? I'm going to talk to my neuro about it again.

[ssdw1958 in reply to Ikeeptrying]

Well It is really hard to tell with the weather we’ve been having in the Northeast I did notice my right hand some days the numbness as bad as other days. I’ve only had 2days but they were only half a dose of Ocrevus my next dose will be April 6th a full dose but my doctor said some people don’t notice any changes right away. So we will wait and see. I’ll put it out there after I have it.

Have a good day!

[Cwacker]

Hi, my slow progression of SPMS has not been halted with any meds, I was diagnosed progression to SPMS in 2014. I just saw my neuro last week for my regular visit and asked her the importance of being on a med that won't stop the progression and my age. I'm 62. anyway...she asked if I wanted to go on a trial that is being tested to stop and repair disability . It's biotin which is vitamin B7, You can look up the info on MS news today May 9, 2017 article. Sorry I'm not very computer savvy to figure out how to put the website address in here. I have my first appointment to see if I qualify on May 9.

[Ikeeptrying]

Thank you. I'll I see my neuro today and will ask him about it!

[agate]

@Ikeeptrying, I've had SPMS for 38 years. The progression can be very very slow if that's any comfort. Things were really bad in the first 6-7 years but as time went on some of the symptoms calmed down or (more likely) I figured out ways of preventing them or dealing with them. I've noticed that most of them will act up again when they're provoked. I just don't give them a chance to show up but then I stay at home 99% of the time, sitting in my wheelchair most of the time--I sometimes rack up 2,000 steps a day but more often it's around 1,000. Some people find that if they don't mind being sedentary, they can get along with MS without constantly having to recover from bad spells. You do have to be careful not to fall or to get infections, and to avoid stress. Eating the most nutritious food you can and getting PLENTY of sleep seems to help too. I also try to avoid extremes of heat and cold.

So far there's no medicine for SPMS though for a while there was some evidence that Betaseron might be helpful. The drug companies didn't test their injectable drugs (or the infusions either) on SPMS and so they don't really know but the experts are pretty sure that if there's no inflammation going on any more (as in relapses), the MS drugs won't be effective. Usually. Some people, including me, were willing to take the chance that they might be effective and try them anyway. I tried Copaxone and Avonex, 3 years on each. Can't say that they helped. There was no evidence that they did anything for me, but there was also no evidence that they didn't do anything. Maybe I'd have been worse without taking them. Nobody can say for sure.

Because the new Ocrevus is for PPMS, it might turn out that it's a good drug for SPMS as well. I recommend watching the news on these drugs, and on new ones that are coming along.

[CraigS]

I am using Ocrevus now, but I haven’t seen any change. That being said, I have PPMS so I don’t know what the differences are between them. I know that if I stop the treatment and my symptoms get worse at a quicker pace, then the drug must have been doing something. Hell of a gamble to take considering the speed that I am declining in my skills. The whole thing is a bit of a crap shoot as far as treatments go. None of us have the same symptoms. I can only hope that there is a breakthrough to reverse the damage done. I won’t hold my breath though.

Good luck on the journey.

Craig