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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?
“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.
The progression of disease in some people goes from relapsing remitting is to chronic progressive. I would not waste any time getting started on the @OCREVUS. If you are getting worse by losing function. I would definitely start as soon as possible because once it is lost it is difficult to get back
@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. :-)
@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...
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