Well..... First I will share a short version of my story. I am 41. MS dx at 27. Took copaxone for about a year. No relapses, convinced myself I didn't have MS and quit taking the drug and seeing Dr. Went untreated for 10 years. Had mild episodes that I didn't think were MS. (Wrong)!!!
Major relapse in 5/2013. MRI showed many many old lesions and 2 new/active. Immediately saw MS Specialist and started Aubagio. Took it for 8mo. Had MAJOR hair loss and neuropathy pain. Got aggravated and quit taking it. Had another major relapse in 6/2014. (Progressive lesion worsening) Started Tecfideria. Dr wanted Tysabri, sounded wonderful, I had very substantial disability from relapse. JCV titer very very high, 3.6. Not a risk I was willing to take.
Knowing now the importance of being on a DMD I suffered through super severe stomach pain for several weeks. Not nausea/diarreah but excruciating pain. It stopped, I made it and thought all was well. Been on it for 8mo now. About 2 months ago I developed fairly severe acne, horrible night sweats, severe fatigue, decreased mobility. Immediateky assumed it was hormonal. All test were perfectly normal. Research was done by my PCP and though these things are not listed as side effects by Biogen there were many reported cases of these exact symptoms with Tec. Went to MS Dr today and he agreed. Said it needed to be stopped.
I'm borderline SPMS so efficacy is very important. Gilenia is about all we have left to try that doesn't seem to have the daily debilitating side effects. Feel like this is my only option. Would like to hear BOTH positive and negative experiences.
I feel like I'm at the end of my rope. I feel like there is no good solution. I'm aggravated, discouraged and just plain tired.
Input is appreciated.
Major relapse in 5/2013. MRI showed many many old lesions and 2 new/active. Immediately saw MS Specialist and started Aubagio. Took it for 8mo. Had MAJOR hair loss and neuropathy pain. Got aggravated and quit taking it. Had another major relapse in 6/2014. (Progressive lesion worsening) Started Tecfideria. Dr wanted Tysabri, sounded wonderful, I had very substantial disability from relapse. JCV titer very very high, 3.6. Not a risk I was willing to take.
Knowing now the importance of being on a DMD I suffered through super severe stomach pain for several weeks. Not nausea/diarreah but excruciating pain. It stopped, I made it and thought all was well. Been on it for 8mo now. About 2 months ago I developed fairly severe acne, horrible night sweats, severe fatigue, decreased mobility. Immediateky assumed it was hormonal. All test were perfectly normal. Research was done by my PCP and though these things are not listed as side effects by Biogen there were many reported cases of these exact symptoms with Tec. Went to MS Dr today and he agreed. Said it needed to be stopped.
I'm borderline SPMS so efficacy is very important. Gilenia is about all we have left to try that doesn't seem to have the daily debilitating side effects. Feel like this is my only option. Would like to hear BOTH positive and negative experiences.
I feel like I'm at the end of my rope. I feel like there is no good solution. I'm aggravated, discouraged and just plain tired.
Input is appreciated.
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