Going Off of Avonex after being on it for 11 years

A board to discuss the Multiple Sclerosis modifying drug Avonex

Going Off of Avonex after being on it for 11 years

Postby cleannana » Sun Jun 03, 2012 4:52 pm

I have been on avonex since 2000. I have done really well with it, except since October of last year, my systems started up again and they have not gone away. My neurologist thinks the Avonex is no longer working for me. He told be to stop the Avonex, I have one shot left and they are suppose to be calling me to set me up on Tysabri. It is now 5 days since I should of taken my shot and I feel horrible, just weird all over. Has anyone experienced this problem, I am worried and scared at the same time.
Any help would be wonderful,
Thank you....
Michele
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Re: Going Off of Avonex after being on it for 11 years

Postby Scott1 » Tue Jun 05, 2012 2:10 pm

Hi Michele,

I've used Avonex for a very long time now but what you are saying is what I always assumed would happen if I didn't do something else as well. I'm sure your neurologist is well meaning I suspect he/she doesn't really know how or why Avonex influences MS. You will probably get an answer if you ask but you probably won't be able to judge the quality of what your told anyway so lets think of some other things.
"Wierd" is how I feel when I don't manage my MS so I think it is a very good word to describe how you feel.
At a bare minimum, a set of tests would show you have a very low level of Uric acid, low levels of B vitamins, low levels of some non essential amino acids , impaired Vit D and and low readings on some minerals. The problem is Avonex was never designed to deal with these things on its own. Interferon is a signalling agent to alert the immune system and that is all it really does. If you don't deal with underlying issues eventually your immune system is too exhausted and the Avonex becomes ineffective. I'd say the Avonex was working but your system has become exhausted. Your neurologists approach just sounds like he's stabbing around in the dark and if he hasn't done any of the tests to check those levels then you might as well take advice from a next door neighbour.
There are several different approaches people take on these boards. I prefer to assume that underlying cause is an EBV infection and treat it accordingly with great success. (see Avonex and Valtrex under the regimen section). Others have different approaches and there are common elements but different ideas as causes.

Regards
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Re: Going Off of Avonex after being on it for 11 years

Postby cleannana » Tue Jun 05, 2012 2:37 pm

Thank you for getting back to me. And I do agree with what you have stated. I had some tests done and it stated by D3 level was 44 not bad, but not good. I take 5000 iu's of D3 each day, so I was very upset to see this number. I have not check on the other levels but I do believe this is something I would love to get checked out. Avonex was the only prescription that was taking and the rest is naturals and I did research and started taking these on my own. The doctors of course are not interested in this approach. I am very excited to research and see what I come up with. Thank you again. I will post when I find the results.

thank you again,
cleannana
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