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What is the lonest anyone has gone without treatment? I have aplastic anemia they think may have been caused by tysabri, but they are uncertain. I had my last treatment in November. I was on prednisone from the end of December until last week. I am worried about not being on treatment and what may happen.
I have been on cop axons, beta sermon, avowed , re if and Techfidera and I have given up on them all because of the side effects. I feel like when you are told about a drug to put in your body, you yourself must weigh the benefits vs side effects. I now have liver disease, diabetes and AFib(not related to heart valve problems). So now I say to the neuro doc, primary doc and gastro doc, when a drug is offered and I hear the side effects, I say.....well, why not just put me in front of a bullet or I ask the serious question...Would you (meaning the doc) let one of your family members take this drug?
To Take SOME MS DMD or NOT To Take Any MS DMD?
Comments Sought:
Take An Interferon (fewest injections; never tried an Interferon) or Treat Any Relapse or Symptoms With IV Steroids?--not unlike Tysabri (I tested + for JC virus, so docs nixed Tysabri as an option).
Two Sept neuro consults offer opposing recommendations despite reviewing the only medical records I could produce--local MRI clinic's 2012 MRI showing MS and the 2013 MRI that showed the 1 relapse I've had resulted in 'no significant changes' (diagnosed & started 1st treatment in 2007). Both docs say my brain MRIs show only one 'attack' or 'relapse' and my MS seems stable. I have not tolerated drugs well, rather...I did until adverse serious drug effects showed up. I now have a diseased liver, my white blood cell count remains low despite being off MS drugs for almost 6 months. I had to stop my second (but different DMD) drug attempt recently due to unresolvable horrendous injection site reactions. When I saw these neurologists for what to do next, both based their recommendations on their access to only my last 2 MRI scans (early 2013 is the latest) [medical records not yet in from 2007].
I typed in the search box:
"general prognosis statistics for treatment vs no treatment" and 528 posts came up...
Does anyone know the general outlook for MS disease progression if DMDs are NOT used?
@A MyMSTeam Member: My experience sounds similar to yours.
I forgot to tell you that I have been without an MS Disease Modifying drug since Jan 1st of this year.
I have seen the successes in DMD's in my sister who has been on Avonex for 11 years and myself who changed from Avonex to Tecfidera (doing much better). However, we are all different and respond to medications differently. Regarding your question, I think you should ask your doctor, but I do think the prednisone may hold you for a little while, even after you stop it. By the way, why did they stop it?
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