SPMSers: What meds are you on?

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SPMSers: What meds are you on?

Postby Anonymoose » Tue Mar 12, 2013 7:57 am

I'm interested in identifying a pattern of endocrine dysfunctions in RRMS, SPMS, and PPMS. It could be that these dysfunctions are related to the progression of MS.

If you would, please share the medications/supplements you take for any condition. Also, is your blood pressure normal, high, or low?

Many thanks!
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Re: SPMSers: What meds are you on?

Postby ljelome » Wed Mar 13, 2013 4:05 am

Dear anonymoose...i would like to know the result of your survey about meds for SPMSers.
Could u please notify me if u already have response to this topic.
I'll be very grateful for ur help.
Thank u so much.
Linda
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Re: SPMSers: What meds are you on?

Postby xpsychiatricmd » Wed Mar 13, 2013 9:23 am

Hello,
I am currently enrolled in the Tcelna trial fpr SPMS ( Abili-T ). I have received two injectioms. Because it is double-blind, we don't know whether I am receiving the real stuff. I haven't noticed any improvement so far, although I know that is too early to tell. I am here thinking that there is no way I can last two years like this. I may have to start steroids again. There are no approved treatments for SPMS other than Novantrone which can be cardiotoxic.
I question the ethics of this double-blind study because of the following:
1). There are no approved treatments for SPMS other than Novantrone. Consequently even mild
improvements are welcomed
2). The product has no side effects. It is produced by your own body and a previous trial for
RRMS corroborated this finding ( TERMS trial ).
3). Even though the results failed to be statistically significant, the vast majority of patients
noticed improvements. The statistical findings could have been an artifact related to the
way patients were randomized.
4). An open-label trial with Tovaxin ( Tcelna's previous name ) was underway when funding
suddenly stopped.
It is incomprehensible why (due to the reasons cited above), the FDA and / or Opexa went with a
double-blind study, instead of an open-label.
.
Last edited by xpsychiatricmd on Wed Mar 13, 2013 5:47 pm, edited 1 time in total.
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Re: SPMSers: What meds are you on?

Postby Anonymoose » Wed Mar 13, 2013 10:15 am

ljelome,
The info will be here for all to read. :)

Xpsychiatricmd,
That must be so frustrating. It makes perfect sense that you would seek other means of protecting yourself. Sadly, the one with the disease is the only one 100% interested in saving his/herself.
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