New treatment for PPMS

[oceanpride]

Hello I was just wondering if any body else with primary progressive MS has taken that newer drug Ocrelizumab. And if so what were your observations? I’m going through the process now for screening and was just curious. Thanks.

[pb909]

I have not but
there is a message board under Medications & Treatments / Ocrevus
with many threads with user experiences.

[oceanpride]

Thanks pb909. Ive been reading and watching those posts and threads since they started but I just thought that maybe PPMS ers might check this foram every now and then. It’s not very active here that’s for sure. I know I’m only in the 10% group so understandably.

[Cindy105]

Yes I know we with ppms are the minority but at least we are here now : ) I also have a benign slow growing brain tumor which is inoperable due to the ms. You can't operate on a brain with ms unless it's life threatening and it isn't, it just isn't helping. I went to the NIH in 2011 for a clinical trial on a drug for ppms but it didn't make past stage 2. Sigh. BTW, I was dx'd in 2005 at Barrow Neurological in Phoenix. Anyway, the topic is talking. Have you ever been slurring so bad (and not even realize it) that ppl not only can't understand you but think you're drunk?? At 6 am? I always wanted to say, "Who says wine is just for dinner?" lol Then I just think I could make such a jerk out of you right now but it's not worth the time or the effort. I felt the same about the rude comments regarding my handicap plate which stopped with the sticker that says you can have my handicap spot if you take my ms too. I got it from cafe express. Positive attitude is everything. I'm so glad I found others with PPMS. Have a blessed day!!

[oceanpride]

Hello animaluver. We were both dx’d the same year. I did not know about brain surgery and MS. Hopefully both your MS and tumour stablize. That’s a lot for one plate. I don’t have any trouble talking although they say I’m a slow talker. I get quite hoarse when over fatigued. Good luck on your journey I think I’m going to try Ocrevus see if it helps any. I could use a little. Have to try something.
Take care.

[Cindy105]

Hello animaluver. We were both dx’d the same year. I did not know about brain surgery and MS. Hopefully both your MS and tumour stablize. That’s a lot for one plate. I don’t have any trouble talking although they say I’m a slow talker. I get quite hoarse when over fatigued. Good luck on your journey I think I’m going to try Ocrevus see if it helps any. I could use a little. Have to try something.
Take care.

Please let me know if it helps. By the way, my name is Cindy. I was in here before as Cindy105, might see if I can put the two together. I was told at the NIH that rrms is based on inflamation and ours is not, but we have more lesions on the spinal cord leading to faster disability. I couldn't do the many MRIs they wanted because my bladder can't take the contrast. I have to self cath and after a couple of the long mris was was passing only blood, no urine so my neuro amd reg doc made me quit the program. I was able to give extra blood and spinal fluid for research but no more of those mris. I'm hoping the trial you're referring to works out! I'm excited as we know almost all is for rrms. Thanks for doing it: )

[DonnaH]

Hello I was just wondering if any body else with primary progressive MS has taken that newer drug Ocrelizumab. And if so what were your observations? I’m going through the process now for screening and was just curious. Thanks.

I was dx 6 months ago, battery of tests and boom not just MS but PPMS. Just like living Murphy’s law, damn the rarest form. Only one possible med. But 1st lets get the Mammo & Shingles shots ( Ive had twice by 45 yrs, before I can even start to see a possible light in the tunnel of this.....
my 2nd singles shot tomorrow and 4 weeks wait for Ocruvus. I will keep up on this area of the site.
thanks to everyone here who sees the glass 1/2 full.