Ocrevus and age

[whwiechm]

I have heard that Ocrevus has little effect after a certain age. I am 76, so I am priobablyt above any age mentioned, but I am hesitant to stop the infusions in case I get a new exacerbation. Has anyone else gone through this, and has anything new happened after stopping?

[alsorenson]

I am 70 with progressive ms. Ocrevus is the only FDA approved drug for PPMS. I'v taken ocrevus for a year but am seriously considering stopping. My symptoms are getting worse while taking ocrevus so I think I've decided to focus on my immune system as ocrevus has some negative impact to it.

My biggest issue with ocrevus and seniors is the lack of data of its impact on people my age.

It's a really hard decision, but mobility and cognitive ability is declining, I'm thinking i should focus on my immune system. I'm a month past due fr my next scheduled infusion and no noticeable impact so far.

Either way it's a roll of the dice with an uncertain outcome.

Best of luck to you

[tompumo]

Ocrevus slows progression. As we get older, progression naturally slows as well. So the benefit of ocrevus may be less as we get older.

[CatsandCars]

Hi, whwiechm. I have not been in your situation yet, but there is another choice between Ocrevus and nothing. You can ask your doctor about deescalation, which means moving to a drug that's less effective but safer as you age. Aubagio is often used for this, although I'm sure there are others. Aaron Boster, whom I think is a very sharp and compassionate MS doctor on YouTube, has a video about this.

youtu.be/uUN9qPoMj14(Not working as expected?)

I know changing or discontinuing meds is always scary, at least for me. Good luck, whatever you decide.

[moonshadoe in reply to CatsandCars]

my neurologist did the same thing, he put me on a low dose of Aubagio after I stopped my infusion of Ocrevus . I had to take 3 different drugs in order to have the infusion and at 68 years old I just wasn’t comfortable with it anymore. Jeannine

[CatsandCars in reply to moonshadoe]

Thanks, Jeannine! I think it's a personal choice for everyone, but it doesn't seem like a lot of people know about the option to deescalate, or maybe they're just done with meds, period. I just like to make sure everyone knows their options. 😊 I hope that you're doing well on Aubagio!

[Robsmom]

My last infusion was 1 year ago and I've had no disease activity. I'm 69 years old.

[Kenu]

Good Morning the last dmd on was on was Aubiago after being on seven different ones over 25 years. At 65 my MS doctor advised that I had been stable for years and the DMT might not be doing much and was my decision to stop if I wanted. I was in Boise Idaho at the time and he was very knowledgeable and had written a couple of books on MS. I was undecided and was moving back to Pocatello Idaho and went back to my MS specialist there and she had the same conclusion it was up to me. So I finally decided to go off medication and has been almost four years and has stayed the same 🙏 I still have the same issues as before and slow decline but no new activity 👍🏼 So far good. It’s always a personal choice 👍🏼🙏😉

[mrsmike9 in reply to Kenu]

I'm not on Ocravus, but that is similar to what my neuro said. I am 65 and I'd asked, because I'd heard of people stopping their DMT which makes me nervous. I was told that if things have been stable for 5 years or more, it's fine to stop the meds as long as the patient was fine with it. I am too nervous of things going south, so I don't forsee me stopping mine!

[CatsandCars in reply to mrsmike9]

I'm with you 100%, mrsmike9. It's different for everyone, but Aaron Boster says 30% of older patients in a study of those going off of DMTs had progression. I'm very happy for those who are in the 70% who do well, but I don't see myself risking being in the 30%.

[CatsandCars in reply to Kenu]

I'm really glad that you're happy with the decision you made, Kenu!

[Avocadohealth]

I am 68 years old and also was diagnosed with PPMS just last year. (Never had RRMS) I’m on Ocrevus as of last August and scheduled for my 3rd infusion next month. My mobility is very quickly getting worse and I use a rollator at home and don’t leave home much . I’m questioning continuing Ocrevus also but as you stated that is the only medication approved for PPMS. I don’t know that I’m experiencing “crap gap” because of the constant decline and don’t feel any better in the months just following the infusion. Very confused as how to proceed.

[CatsandCars in reply to Avocadohealth]

A very small number of people get significantly worse on Ocrevus. I am one of them. It's very unfortunate that there'sno way to tell if yoir MS is very bad, or if Ocrevus is making you worse. Ocrevus may be the only drug approved for PPMS, but I wonder of an MS specialist could prescribe something else off label. Maybe you could post that question - if anyone with PPMS has been prescribed other meds - to the group. It seems to me that some people with PPMS have posted about starting Mavenclad, if I'm not mistaken. I have RRMs, but I have decided no more Ocrevus for me. The worsening might have nothing to do with the Ocrevus, but I'm not willing to stay on it any longer and take that chance.

[Avocadohealth in reply to CatsandCars]

Thank you for your reply. I see a MS specialist in about a week so I’ll ask her again that question. Nothing else as far as I know is FDA approved for PPMS but she may have another suggestion.

[JTZES]

I'm 58 and been on ocrevus for the last 6 years with good results. I show no signs of a exacerbation but my symptoms are getting worse. MRI's are a good tool for MS but becomes less effective over time.

I read an article about a cancer test that that identify signs of cancer and where it is in the body.

They have modified the PET scan for the brain. Test showed that 40% out of 100 people that had good MRI's with MS showed lessions that the MRI never detected.

I would like too have a comparison between the two.

I know I went off topic but do wonder if any results are true

[CatsandCars in reply to JTZES]

That is thought-provoking, as many doctors treat the results as gospel. My doctor says MRIs aren't perfect, which is a refreshing change.

[whwiechm]

Thank you all for your replies. It seems like this is a question on many MSers minds.

[stepsforNeeC]

Well, this is the “Trillion Dollar Question” I just had with my Neurologist? I’m on Copaxone and 67 years old. My exacerbations are 2 - 3 years out, and I can go months and months with hardly any really severe issues! Maybe I learned to live with a moderate pain level that Non MS(er’s) couldn’t tolerate. But I am really at the point where I don’t have to inject needles in my body! Be Blessed. NeeC

[CatsandCars in reply to stepsforNeeC]

I couldn't take all the injections thst being on copaxone requires. You're a brave lady! As I told whwiechm, going off your meds completely is not your only choice. 30% of those who do will have their MS progress. At the last ECTRIMS conference, the experts did a complete 180 from their previous recommendations and said that MS patients should stay on medications, but that information has seemingly not filtered down to patients or neurologists. What to do about medications as we age is a personal choice, but it should be an informed choice! That doesn't mean you have to stay on Copaxone and be a pincushion. You can change to another medication that comes in an easy pill form. I love Dr. Boster on YouTube, I never thought a guy on YouTube could be legit, but Dr. Boster is. He runs an MS center in Columbus Ohio, and I wish I could go see him! Here is one of his videos about whether to stop medication as you get older:

m.youtube.com/watch?v=oWERf...(Not working as expected?)

[Tazmanian]

talk with your neurologist please don't just stop good luck

[NanaCC179]

I’m 62, last O June 2023, so far I’m ok. MRI, Dec, 2023, no change. After Jun, 2023 O I had 4 upper respiratory infections landing me in hospital for a week with large abscess in lung. CDiff followed due to all antibiotics. So I am cautiously optimistic, praying a lot. Living Mediterranean food plan, no processed food, any food I cannot pronounce or is not natural I avoid. Did I mention I pray. Dx 2018, Ocrevus only dmv I tried. Worked but needed to have 5 month intervals. I never had any infections for anything before Ocrevus. No surprise, it’s what O can do. Stay strong be good to yourself who else will be. Peace MS warriors