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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Is You Thoughts On The

What Is You Thoughts On The

I was diagnosed with MS in 2001 I started with @Avonex . Switched to @Tecfidera little over a year ago. Feeling like this are getting worse I meet with my neurologist. She now thinks Im PPMS. She gave me information on the MS Medication "[[treatment:OCREVUS":57e1c02fe1f26a0440000199]]". Asking for help to make a an educated choice whether to start the OCREVUS or not?

posted April 14, 2018 (edited)
A MyMSTeam Member

@A MyMSTeam Member - I don't know what you mean by getting worse. I can tell you I was on Tecfidera and my mobility got worse, which I attributed to disease progression. My insurance company held up sending me medication when I changed insurance so I tapered off. I noticed that my mobility improved. I went back on full strength. Mobility decreased again. Then tried again and had an improvement in mobility. In any event, when I got to the neuro we talked about it and I told him I had scoured the drug information and didn't see anything about mobility. His response was the drug information is based on the trials and isn't necessarily a complete reflection of possible side effects. Now I am off medication while I get ready to go on something new. In any event, long winded way of saying it could be the drugs. :-)

posted April 15, 2018
A MyMSTeam Member

@A MyMSTeam Member

It's highly unsual to be DX'd with RRMS and 16 years later DX'd as PPMS . In fact if you research PPMS it's a class all by itself. Your DX'd with PPMS from the onset. Per my Neuro who is a MS Specialist with a major MS Research Center RRMS progresses to SPMS but very unlikely progresses to PPMS .

https://www.nationalmssociety.org/What-is-MS/Ty...

https://www.nationalmssociety.org/What-is-MS/Ty...-

https://www.webmd.com/multiple-sclerosis/primar...

posted April 14, 2018 (edited)
A MyMSTeam Member

“Secondary progressive MS (SPMS) is initial relapsing remitting that suddenly begins to decline without periods of remission.” Once you start to decline without remissions, ask your doctor to change your DX medical records to “SPMS without remissions”. It’s easier for social security to approve a disability claim if your medical records clearly state your disease will be progressing without remissions. Why not try @ocrevus if it might stop disease progression from where u are now to bed ridden or worse. Just do everything exactly as your doctor perscribes if you go with it.

posted April 14, 2018 (edited)
A MyMSTeam Member

With my financial situation and what's covered, been on betaseron for over 4yrs, Ocrevus is a med I want to try, I may qualify for Ovrevus since it was released in Canada a month ago, my opinion- it's the next best thing to stemcells

posted May 6, 2018
A MyMSTeam Member

It is hard to tell what to do.. If you see active new lesions on MRI then it would be an easy decision. But without that information and I was losing function I would go with my gut

posted April 20, 2018

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