Author Topic: My doctor thinks I should start taking Ocrevus  (Read 47 times)

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Offline ewizabeth

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My doctor thinks I should start taking Ocrevus
« on: April 26, 2019, 11:27:20 am »
I've been off Aubagio for six months and my leg weakness seems to be getting worse. My energy levels are worse as well. I'll be getting a new MRI of the brain next week and the neuro is giving me EMG tests in my legs as well (not sure what that's for) but I'm still having a lot of back and leg pain too. It will be interesting to see if Medicare approves the Ocrevus. They denied my injectable B12 last week and that's only $8 per month. I guess I'll find out.

Offline agate

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Re: My doctor thinks I should start taking Ocrevus
« Reply #1 on: April 27, 2019, 04:03:49 pm »
I always have a problem with wondering about MS drugs when people say they stopped taking one and then got worse, whereas while they were taking the drug, they seemed stable.
 
I wonder about them because MS can have that kind of course even without any drugs. It can be stable for years and then suddenly it starts getting worse. How to know whether the worsening these people notice after stopping an MS drug wouldn't have happened anyway?


The MS drugs have been shown to be helpful for a fair percentage of people with MS, particularly if they're still having relapses. If you aren't having relapses any more, it looks more and more as if no MS drug will be nearly as likely to benefit you.


About Medicare coverage, there should be a number to call to find out about whether your situation would include coverage for Ocrevus, but getting information about any medical coverage can be an involved process. It may be one you'll need to go through unless the prescribing doctor's office is willing to help you. They might even find out for you and spare you all of the calling.


Good luck with the MRI and the EMG testing!There is this about EMG:


https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/electromyography-emg



MS Speaks--online for 12 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010.

Offline ewizabeth

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Re: My doctor thinks I should start taking Ocrevus
« Reply #2 on: April 28, 2019, 08:55:18 am »
I have noticed that there seems to be fewer people disabled now than there was years ago, largely in part because of treatment availability.


My neurologist is a local guy with two offices and he's very busy. He doesn't make a lot of money from the drug companies like my first one did. Dr Wynn, the first one was making about a million dollars per year from the drug companies the last time I checked (though he conducts clinical trials too.) Dr Ta, the current one made around twenty thousand. I don't think he's pushing people to take medicines unless it really seems necessary. He was ok with me stopping meds until I started getting worse again. My fatigue is pretty bad, my walking is worse and legs weaker (might be related to my back?) and I had to add another AD for my mood. I suppose the MRI will tell us something?


I've been looking at some Ocrevus groups online, those not managed by the drug company, and most seem to be doing pretty well without side effects.


I guess I'll wait and see what the MRI shows and then think about it some more.





Offline agate

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Re: My doctor thinks I should start taking Ocrevus
« Reply #3 on: April 28, 2019, 09:45:53 pm »
Dr. Ta's twenty thousand is still a lot of money but looks paltry alongside the other doctor's million.  I hope the MRI will provide some answers.


I have a neuro who is fairly young but she seems willing to let me decide, and she has a good sense for when to back off, I think.



MS Speaks--online for 12 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010.

 

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