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wash out period.

Posted: Sun Oct 14, 2012 7:22 pm
by onesickrace
has anyones neuro spoke to them about the wash out stage and what they are planning to do in the switch from ty (or anything else) to bg12? i have horrible side effects to solumedrol and dont want to do the 4 week solumedrol wash my neuro is asking. my neuro also has the worst record ive seen on yelp as far as anything and everything medical goes. im not in a position to change right now either.

thanks in advance.

lee.

Re: wash out period.

Posted: Sun Oct 21, 2012 12:26 pm
by onesickrace
anyone?

Re: wash out period.

Posted: Sun Oct 21, 2012 1:01 pm
by lyndacarol
Lee, I am not qualified to speak on switching from Tysabri. I will leave the questions on medications to others at this website, since I have tried three and now choose to forgo all approved MS medications (I do not see how there can be an effective medication when the CAUSE of MS is unknown.).

I will only offer my opinion on Solu-Medrol: It is a glucocorticosteroid and, as such, raises the glucose level in the bloodstream. In response, the insulin level also goes up. It is an accepted fact that long-term use or high doses of these steroids are linked to increased risk of diabetes. I attribute many of the symptoms of MS to excess insulin. Therefore, anything that will raise the insulin level – diet, steroids, BCG vaccine for tuberculosis, chronic mucus-causing conditions, etc. – is not good for those diagnosed with MS, in MY opinion.

Re: wash out period.

Posted: Thu Oct 25, 2012 8:01 pm
by onesickrace
thank you for the reply. helpful and insightful. it is appreciated..

Re: wash out period.

Posted: Mon Oct 29, 2012 10:46 am
by 1eye
Are you part of a clinical trial? If so, the so-called washout is so that other scientists cannot say your results were due to Tysabri. If not, I think the documentation that came with the medication will tell you. The other thing is that the first people to die on Tysabri were also using another immune system drug (Avonex, I think), and the speculation was that it was the combination that was deadly. I'm not sure if it was and I don't want to find out. Since then doctors (and patients) have been scrupulous about immune system modifications, in case nothing is left to fight PML with. I think it's too bad you can't just start the drug, but solumedrol's effects will hopefully not last.

Be comforted that it is only a theory that "MS" is autoimmune at all, and they don't know why BG-12 does anything.

Re: wash out period.

Posted: Sun Nov 04, 2012 10:41 pm
by onesickrace
thanks 1eye. much appreciation. with little trust in any big pharma, i have a hard time trusting anything they say at this point... 4 years on ty and nothing but bad things about getting off of it doesnt look inviting.

Re: wash out period.

Posted: Sat Dec 15, 2012 8:28 am
by Zac
I've been off Tysabri for 5 months now due to being told I am now JCV positive after only 12 infusions, initially instant fatigue relief was experienced, I was never comfortable on ty always felt worse after each infusion and would rather face MS than both MS & PML ?.
My neuro has now suggested trying beta intaferons ??

Regards.

Re: wash out period.

Posted: Sat Dec 15, 2012 3:55 pm
by CureOrBust
Something to talk about with your currently prescribing neuro. Also, I would guess its a little too aggressive, however, I think I read PML while on Tysabri, that have a treatment to hasten to removal of the drug from the body.

In regards to steroids, I would hazard a guess that solumedrol would be the recommended treatment while on BG12 during a relapse. Remember, that was a total guess.

Re: wash out period.

Posted: Sat Dec 22, 2012 11:56 am
by turbotaguy
My neuro and I discussed switching from Ty to BG-12 in the spring. She recommended a 2 month wash out period. Basically, missing 1 month of Ty. (i.e. last infusion May 1st, no June 1st infusion, start BG12 on July 1st).