Several years ago, when I turned 70, my neurologist took me off Ocrevus due to my age. I was doing good on it with no side effects except a migraine right after the infusion. I dealt with that. I called the mfg and was told they had not done any studies on people over 60. I feel that my symptoms are now getting worse. My other issue is I no longer have a neurologist. I will have to drive 300 miles to see one now, but if I am not on anything, I am now 76, do I just go with the flow? I haven’t had an mri for 6 or 7 years. I don’t think I even need one at this point.
Thoughts? Ideas?
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Mom4JS
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I'm not on any DMT's, but I'm angry that your neuro took you off a drug that you liked without your input. For now, I think I'd get an MRI, if your insurance will cover it and you can actually get there, just to see whether you're showing any new lesions. If not, it's probable that your growing issues are related to normal aging. (Sorry!)
Do you have a local doctor who could schedule an MRI nearer to your home? After my neuro retired, I just started going through my GP for most things.
I do have a good gp and I will call him. I was diagnosed in 2005 and immediately went on a dmt. I’ve been on numerous injections and when I finally got on Copaxone I did not develop and new lesions for 8 years, then I went on Ocrevus. Haven’t had an mri since. I still walk only using my walker when I have to. I still drive. I am so fortunate but now I feel that everything is getting worse. Thank you for your suggestion. I will call my doctor.
I'm sorry that your doctor did that to you without offering anything else. You may want to check out Dr. Aaron Boster's videos on YouTube. He's an MS neurologist who does not believe that people should stop being treated for their MS just because they're older. Sometimes, because our natural immunity wanes as we get older, neurologists like to move people to drugs with less risk of infection, like Aubagio. You could live another 20 or 30 years with MS, and there's no reason you should risk progression for all that time. If I were in your shoes, I would find a neurologist and see if he could have your GP order tests and MRIs locally. Maybe you could see the neuro once a year or something. Don't stop getting treatment because it's gotten considerably more difficult. 😊
I was going to say the same thing about Dr. Aaron Boster. Just watched his livestream from Sunday and he reiterated that he does not believe in stopping DMT's just because of age, but maybe going on a lower efficacy one, if you are doing well.
I'm so sorry your neuro did that without your permission, and I hope you are able to get in with a good neurologist soon! Some around here that are further away from me offer telehealth visits, and will still order MRI's and things, perhaps that is something you could see if it is available close to you? You'd have to go in if a problem arose, but other than that, the rest is via Zoom or something like it.
I'm 69 yrs old and we (me and neurologist) decided to stop Ocrevus because of depleted B and T cells. It's only been 9 months since my last infusion and I feel really well. But, I will continue seeing my doctor every 6 months and have my MRI every year. If I have anything that seems new or if anything worsens, I'm to call right away. I agree with everyone, you should be followed by someone, Neurologist or PC.
I am 76 now and have been on Ocrevus for about 5 years now. I've heard that the med is not as effective at our age, but I don't like the idea of stopping it and having an unrecovedrable relapse, so I am stasying with the Ocrevus. Also, I have had no side effectrs from it.
I am soon to be 65 and have had a conversation with my neuro about stopping meds. I was told that if I went for 5 years with no changes, then we could talk about it. The only reason I even brought it up was because people on this site talked about it. I don't want to stop my meds either. It would make me nervous.
Everyone has a right to make their own choices. But this prominenent British neurologist (that kdali posted about), said that in doing research on MS patients who had died, they found that the brains of all of them had evidence of active disease when they died. I don't know how big of a study it was, but it certainly makes me feel uncomfortable with the idea of going without meds.
I didn't know that! Well, that confirms my idea that I want to stay on my meds! I agree, people can do what they want. But I want to keep this devil from controlling me as much as possible!
I'm 70 yrs. old too and am grateful every day that I have lived through the infections, vertigo, & pain but now even though I can still walk my legs don't always behave and obey. I am not complaining, I'm just aware of the changes. I had to go off the meds also because of infections like osteomyelitis in the jawbone. Getting off the Meds at my age and in the progressive stage it was a positive thing as I felt better minus the side effects. Getting older with MS is not 'normal' aging though,
This scares me. I am 63 & in a rural area. Will my goof-ball neuro want to stop my treatment soon? She seems to know NOTHING about MS. I tell 'her' stuff I learn from Dr. Boster. It would be a 300+ trip one way to see an MS specialist, but I am going to make the switch soon. Good luck, MOM4JS!
North Mississippi. Memphis does not have an MS clinic. The closest is Jackson, but I hear numerous uncomplimentary things about her. The next closest is Birmingham. Right now, we are working on a trip to M. D. Anderson (hubby has stage 2 prostate cancer). After that, I am going to Birmingham!
You go Mollyabigail!! if your husband balks at going to Birmingham just remind him that y’all went all the way to MD Anderson for him! I am going to be seeing my neurologist who I’ve known for almost 25 years at the end of this month… But he is supposed to retire this year..🤦♀️
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