Ocrevus discussion with neurologist

[Yooper]

Met with my neurologist. I have been on Ocrevus for a year with no results. Weaker if anything. Decided not to continue unless I start to slide faster. Did go to Adderall for energy.

[Kj9681]

I went to Adderall also. Potent stuff!

[ssdw1958]

Please keep me informed on how you are doing I am on Ocrevus this October it will be a year I am not sure what or should I say if it is doing anything for me.

[dianekjs]

I'm sorry you're not having improvement in your symptoms, but remember that the primary goal of this treatment is to inhibit the development of new lesions and associated disease progression. Have your MRI scans been stable? If so, most MS specialists would consider the drug to be meeting its objective. It's true that some people do see significant improvement in symptoms, but my understanding is that this most often starts to occur beyond the first year. Did you ever watch Tim Vollmer's YouTube Q&A on Ocrevus? He's one of the leading experts on the drug (and on MS) and was involved in the multi-year trials. He has commented that the longer people are on the drug the better they seem to get. Adderall helps some people with energy, but isn't in any way disease modifying so can't help to slow the disease's progression. Remind me what form of MS you have? If PPMS or SPMS, there really aren't currently other options available. We're all different and need to make decisions based on our individual set of circumstances, but for me personally, the prospect of leaving this disease to progress unrestrained terrifies me. Google YouTube Ocrevus Q&A Vollmer, it is extremely well done and may help you to sort through everything. Best of luck to you in whatever you ultimately decide.

[greaterexp in reply to dianekjs]

You make some excellent points. And thank you for the YouTube video info. That video is well worth looking at!

youtube.com/watch?v=J4prsO-...(Not working as expected?)

[dianekjs in reply to greaterexp]

Thanks for posting the link greaterexp , I was typing from my phone and didn't have time to search for it. I particularly appreciated the informal question/answer session at the end of the video and found the perspective on longer-term outlook encouraging. I need to update my own Ocrevus journey here before too long - it's been a little while.

[Yooper in reply to dianekjs]

Thanks for the input. I will watch the video.

[kdali in reply to Yooper]

I don’t think any of the DMTs are suppose to make you feel better, but some people do and they are lucky for that at least...but who knows how long that lasts, maybe it’s just a tease 🤷‍♀️ but I hope for them it’s not!

Do you have other options?

[Yooper in reply to kdali]

None at this time. Will go back on it if I start getting worse. I will just do my best to enjoy each day the Lord gives me.

[kdali in reply to Yooper]

It takes about 6-9 months to grow back all of your B cells. I hope your MD makes a visit with you around that time just to be safe.

[dianekjs in reply to Yooper]

Yooper , it's important that you be comfortable with your care plan, and no one drug will be right for everyone. The point that my specialist made that resonated most with me was that we have no way of knowing which new lesion could be the one to cause severe disability in an instant, so he's a strong believer in doing whatever is within our power to prevent new lesions from developing. I have more than 40 lesions in my brain already and 2 in my cervical spine. There are lesions in my brain stem that they keep a close eye on and worry about. Another lesion in that very critical location could be devastating. When he laid it out that way (and he gives it to me straight), I realized that for ME, I want to be on the drug that shows the best ability to stop new lesions from occurring, and right now, that's Ocrevus.

[Yooper in reply to dianekjs]

Appreciate your information. I plan on praying about it. After input from you and others, I am leaning on staying with it. My wife also wants me to continue. Thanks and God Bless you 🙏.

[lbenmaor]

Sounds like you did the right thing.

Leslie

[Allen5280]

Yooper , I have to agree with dianekjs . O revus isn't supposed to make you better it's yo slow the monster from taking more away. It's my 4th dmt, the first I have been able to tolerate. The others were far worse for me. There are some including me that see some symptom reduction and if I have read the reports correctly there has been some circumstance of remylintation in some circumstance but that's not the primary objective. I have had difficult side effects with extreme fatigue post infusion as well. This past infusion was by far the easiest wit the addition of Modanifil to my meds. Or it can also be that I have been informed it gets easier over time. I believe that in the trials the mark where it gets the best is around 24 months. I know it's a personal decision for each one of us. I will keep you on my thoughts and my prayers as always. Each one of our paths are unique but as fast as I was in a state of decline, I hated thinking about mine putting me in a position where I had to have others care for me full time. I was almost there at on3 point. My doctors were concerned with as aggressive as my MS was being and the areas it was attacking that one more little bit would be it. It's a rare case but what scared me more was being unable to do the simple things on my own like eat and go to the bathroom etc... So whatever decision you have made for yourself and your unique set of circumstances, I pray it is the best course for you. Thoughts and prayers

Allen

[Yooper in reply to Allen5280]

Thanks so much for your thoughts and prayers 🙏. God's Blessings

[tnolan2006]

You could just dose every 12-24 months instead. Efficacy lasts much longer than 6 months. Otherwise you're just waiting for evidence of brain damage before you decide anything.

[Yooper in reply to tnolan2006]

Appreciate your input. Going to do some praying before I make a final decision on dropping or staying on.

[Juliew19673]

How's the Adderall? I've had Ocrevus once a month ago, and have not noticed any substantial change. Steroids worked, but did not last. Wishing you luck.

[dianekjs in reply to Juliew19673]

Juliew19673 , do you mean you had the initial two half-doses, or literally just one infusion? The induction course is two half-doses of 300 mg. each spaced two weeks apart. Did they somehow start you with one full dose of 600 mg.? Regardless, you wouldn’t notice any change yet, it’s way too early for it to take effect - it will take a minimum of three months to start to kick in and possibly considerably longer, so give it time. And remember, as discussed above, the main goal of treatment is to slow or hopefully stop progression. 👍🏻😊

[Juliew19673 in reply to dianekjs]

The initial half doses 2 weeks apart.

[Juliew19673 in reply to dianekjs]

No one mentioned that there was any waiting time - so thanks for that info.

[Yooper in reply to Juliew19673]

Thank you. I have not received the Adderall yet. Hope it helps. God's Peace

[judymax]

I'm having the same problem with weakness and am tempted to go back on copaxone...just hate the thought of shots again.

[Yooper]

Pray it works out for you. I was on Copaxone for about 10 years. In the past year or so my lesions got substantially larger. That is why my neurologist recommend Ocrevus.

[Johngm]

I don't want to sound negative, however just wondering if a neurologist is paid to recommend a drug.

[Rileymom in reply to Johngm]

Good point! How does one know if a neurologist is being paid by the drug company?