Re: Change from Gilenya to Ocrevus

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Kiyaan
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Re: Change from Gilenya to Ocrevus

Post by Kiyaan » Thu Mar 01, 2018 3:56 pm

Hello all,

My doctor called me recently to inform me that my MRI results were piss poor (not her words - mine); clinically speaking, I'm doing fairly well (I pass the "no one can tell I have MS test"). I've been on Gilenya for about five years, and notwithstanding certain sensory issues, pain, and fatigue -which could all be residual symptoms from previous relapses- I haven't had a relapse. My MRIs have not shown any sign of disease activity either, until the most recent one. In fact, I saw the Neurologist a few days before the phone call, and she said that I'm doing very well and recommended that I continue as before. She could not comment on the MRI as it was not available when I went to see her. When she did contact me over the phone to tell me about the MRI results, she left it up to me whether or not I want to escalate treatment to Ocrevus. She did note that the lesion they had seen was large. I asked her to go forward with the process, thinking that I'll think it through further, and make my final decision when, and if, the move to Ocrevus is approved by my Insurance.

So, I've been giving it a lot of thought, and I have read most of what the scientific literature, and the limited patient experience that is available. I'm leaning towards going on Ocrevus based on the wisdom of aiming high (e.g., aim for NEDA), but, I thought I would run this by other people who may have been in a similar position to me to see what they think.

While I would certainly appreciate a yay or nay answer, I'm also curious about what factors you would consider in making your decision (if you were in my position).

Thank you in advance,

Kiyaan

P.s - I think it may be worth mentioning that I am a male in my early thirties, with a diagnosis of RRMS.

Optimistic99
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Re: Re: Change from Gilenya to Ocrevus

Post by Optimistic99 » Thu May 16, 2019 2:37 pm

The problem MS patients face is having access to the real life feedback from other patients. You never know the information you are studying online is either true or just statistical game of pharmacists for promotion of their medicine.
How effective have you found Gilenya? I have read that if you discontinue this medicine, the MS returns worse than before. Hope it doesn't happen to you.
So have you got the Ocrevus infusion by now and what's the response?

A newbie 😊

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Scott1
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Re: Re: Change from Gilenya to Ocrevus

Post by Scott1 » Thu May 16, 2019 3:28 pm

Hi,
It isn't easy is it?
Neurologists have been offering patients this choice since I was diagnosed in the early 1990s. Through that time, whatever medication is the new kid on the block becomes the best thing ever and the old champion retreats.

Gilenya is described as a receptor modulator for remitting relapsing MS. It binds to the lymphocytic S1P1 receptors and degrades them. This has the effect of trapping central memory T cells, which are believed to be auto aggressive, in the lymph nodes. It is, however, not a cure.

Ocrevus is presumed to bind to CD20 on the surface cell antigen on pre-B and mature B cells. It has clinical studies showing a large drop in relapses.

So one is a T cell therapy and one is a B cell therapy. Quite different from each other.

Not all lesions produce MS symptoms. You say you are, basically, symptom free. The thing I would want to know is "where is the lesion?. Is it new? "
The second thing I would want to know is know "could my lifestyle contribute to a lesion advancement?".

I'm slightly lost as to whether your neurologist is advising a change in medication or leaving the choice to you. If its the later then isn't she saying the Gilyena treatment doesn't work for you? If she says stay where you are then ask her what her reservations are about Ocrevus.

For the record, I only use Dantrium for spasticity (which works but is not for the faint hearted) and valacyclovir as an antiviral. I did use Avonex for 10 horrible years and will never go back on it.

Regards,

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jimmylegs
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Re: Change from Gilenya to Ocrevus

Post by jimmylegs » Thu May 16, 2019 3:51 pm

i note in passing the date on the OP
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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