Ocrevus for PPMS

[livewell2]

I am 65 with PPMS

Anyone else 65 with PPMS taking Ocrevus? Is it helping?

My doctor recommended it yet at the same time he is not sure how much it may help .

[Jesmcd2 CommunityAmbassador]

I'm not either of the above livewell2 but didn' want to leave you hanging either. 😊 I'm sure there are some very close tho. That will be able to help you.

You might want to keep in mind that Ocrevus is still a New DMT and I don't really think they know for sure what the long term outcome is. 🙃 But that's just me.

But any DMT I feel to fight this monster! Is great in my book!

Good luck!🤗💕

J🌠

[jimeka]

I am 62 with PPMS, I do not take any DMD and I will not touch Ocrevus until there is more evidence that it works. Blessings Jimeka 🦋 🍫

[livewell2 in reply to jimeka]

Understandably. I have some concern and reservations also. That is why I posted my question.

[ssdw1958]

Well if we're telling our ages I'm 59 years old and I have had my first 3 doses of Ocrevus and I am not sure what is going on with it but I will say right after I took the second (October 2017) and the third which was the full dose ( April 2018) my legs at the time were good but then put in stress and crazy weather I'm not sure what was happening with my body my arms were working better I could snap my fingers on both hands and raise my arms, my legs the votes is still out on them.

Well you asked me so I wanted to let you know. So if your not sure I also am not sure either. We wish it was a medical drug but back in our minds we know it's not but if it stops some of it (the MS) I guess I'll still take it we have nothing to lose but a whole lot to gain. We have to think positive.

😃👍😀😊

[kris1973]

I am 44 with PPMS but decided to wait (for personal reasons) until our girls are older. I think there were several questions asked during a MSAA Q&A regarding patients over the age of the trial participants. -Kris

[livewell2 in reply to kris1973]

Thanks Kris. I will try to find that conversation.

[Fancy1959]

Livewell2, it's Fancy1959. First thing first is that I would like to officially welcome you to this awesome chat room. I know I haven't spoken to you before So I wanted to tell you we're glad you found us. You found a safe place to come and ask questions, voice concerns, you are simply speak to others to truly understand what you're going through. This chat room is full of some of the kindest, most considerate, and most caring people I have ever had the privilege of working with.

Now on to your question concerning ocrevus. I am 59 and I have secondary progressive MS. Even though ocrevus has been approved for relapsing and remitting Ms and primary progressive MS my doctor thought I too would benefit from the drug so I have been on this drug since last September. So far so good I have had a couple positive results from just being on the drug a mere 8 months. My spasticity was pretty consistent and pretty severe. It gradually had gotten to the point where sometimes it could knock me out of a chair when it hit. My muscles went stiff and I had no control of them whatsoever. I'm happy to report now that my specificity has improved probably a good 80 to 85%. I still have spells occasionally but when I do I can make my muscles respond and work through them. Recently over the past 2 weeks I have noticed an increase in general strength. What I'm fighting right now is a bad right knee due to injuries caused from falling on it so often. On top of that I am just getting over a 5 week long sinus / ear infection. This I believe is a direct result of my last full dose of ocrevus in April. It knocked my immune system down and cold started and it just kept getting worse and worse in my head. I got such a severe ear infection it blew out my right ear drum and cause my hearing to decreased dramatically in that ear. For the first time in my life I also developed tinnitus. As the ear has healed up now though that's nidus is gone and the hearing is pretty much back. So words the wise is watch your immune system but I am overall pleased at this point with the results I am seeing from ocrevus. I think it's worth a shot and I would recommend it to people who have not had much success with other MS Therapies. My doctor was extremely high on this DMT as he was one of the main researchers who helped with the clinical trials to get it approved by the FDA. I hope this helps and if you have anymore questions feel free to contact me back. There was a post I did about 2 months back that said ocrevus poll and everyone in the chat room who is currently on the DMT or thinking about the drug put a lot of good feedback and questions and answers into the poll. It might also help to answer or talk about things you haven't thought of to ask. Check it out. Until we speak again please take care and remember that together we are stronger!

[livewell2]

Thank you Fancy! That is great information. I am happy to learn you are seeing a benefit from it

I am about to try Amprya to see if that helps. I chose to start with Amprya before starting Ocvera. I did not want to start both at same time.

I will check out the poll

Glad your tinnitus is gone and hearing is better.

Thank you

[Pink-1]

I’ve had 2 full doses of Ocrevis so far and haven’t noticed anything positive or negative however not sure we will notice until after MRIs. I’ll be getting that done soon

[livewell2 in reply to Pink-1]

I would count Not getting worse is a bonus

[Oneson in reply to Pink-1]

A 51 year old woman who has PPMS I haven't received the first two doses of ocrevus. And I only been about 1 month I have not seen any improvements thus far. I did not really expect any yet. I am also taking Ampyra the high doses of biotin and achtar. I trying anything to slow down this rapid progression. I'll take anything

[Oneson in reply to Pink-1]

I am a 51 year old woman with PPMS. I have only taken the first two doses of ocrevus thus far. Did not expect anything yet. I also take ampy and high doses of biotin akthtar. Any improvement would be welcome to this rapid progression.

[Pink-1 in reply to Oneson]

I’m not expecting Ocrevis to cure me but can’t help but think how wonderful that would be

[livewell2 in reply to Oneson]

I am curious what kind of results ?

you have seen from Amprya. How long have you been taking it?

Is the biotin a prescription? What does it do?

[pamgarner]

I am 63 and in the middle of getting finanaced from Ocrevus,the reponses I have received on that guestion, has all been positive.I have secondary ms, my dr told me I would not regain anything I lost, but I need to stop it in it's tracks. The people have told me the treatment was fine , just the next day extremely sleepy,then the following day back to normal.I am alittle concerned myself, should have it within the month Pam

[livewell2 in reply to pamgarner]

That is what I understand as well

[livewell2 in reply to livewell2]

Wishing you well. Please share your journey with us

[Jackjosh]

Im only 27 and my doctor recremended that but i will take no drugs that cause pml exspecially since I tested jc positive them drugs seem to scary

[Yooper]

I'll be 62 in June. In July I will have 1 year in with Ocrevus. So far, I have not seen any results. Weaker if anything. My doctor said you need to give it 2 years. I may be headed to a wheelchair, but I want to keep doing all I can. Praying you make the best choice for you. 🙏

[livewell2 in reply to Yooper]

I hope you see some positive results soon. It is really difficult when you cannot see results. Hang in there!

Have you tried Amprya yet? It is supposed to help with mobility. I start mine up this week

[CraigS]

I had a couple of infusions of Rituximab, I really didn’t feel any different. Now I’ve had one with Ocrevus and another coming up. I have not felt any change for the better. I’m actually getting worse at this point. But I don’t know if it has slowed the progress or not. Kinda like snapping your fingers to keep tigers away. Is it working? I don’t see any tigers....

Craig

[livewell2 in reply to CraigS]

As I understand it, it can take up to a year to determine if it works. I hope you see some results sooner rather than later.

[CraigS]

Thanks!!

[bavery207]

livewell2 I am 68 and was dx with PPMS at age 65. I have received the 2 half doses of Ocrevus as well as 1 full dose. I will have the next full dose Aug. 1st. I had no adverse reactions except fatigue for 5 days following the first 1/2 infusion. As for improvements, I saw nothing of note until a few weeks ago when my afternoon exhaustion seemed to be better. I might have to sit and rest my legs for a bit but then I could get up and do some more whereas before I couldn't do more. Things were going fairly well 'til I fell and bruised my tailbone and couldn't move very well, so the improvement is on hold for the moment. My neuro is also questioning the Ocrevus due to my age, and will meet with me sometime after the Aug. infusion to see what we might do.

[livewell2 in reply to bavery207]

Just curious what you and your doctor decided whether or not to proceed with the big O treatment

[livewell2]

Thanks. Please keep us posted after your August consult. Sorry about your fall. Hope you heal quickly

[finallyseekinghelp]

Hi, I’m 41 taking the same med but named rituxan. I don’t know if it’s working but my neuro says it’s fighting the progression of RRMS.