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Multiple Sclerosis Community

Reply: 5 day Solu-Medrol 1GM IV Dose - Wow!

5 days! They usually only give me 3 days "026 I'd need a straight jacket after 5! (Not that...

Posted by AndiJx

2 Replies | Reply | Watch This DiscussionReport This| Share this:5 day Solu-Medrol 1GM IV Dose - Wow! 5 days! They usually only give me 3 days "026 I'd need a straight jacket after 5! (Not that...

Reply: Hello

Most of the large drug companies have assistance programs, call them. Resting is the worst...

Posted by AndiJx

5 Replies | Reply | Watch This DiscussionReport This| Share this:Hello Most of the large drug companies have assistance programs, call them. Resting is the worst...

Includes Expert Content

Reply: Diagnosed but not on any meds

This is a tough subject, I was diagnosed 16 years ago, and for most of the 16 years I have...

Posted by AndiJx

This is a tough subject, I was diagnosed 16 years ago, and for most of the 16 years I have not been on any therapy drug. Honestly I regret that decision. When I was diagnosed I had just gotten out of the Navy and was a pretty dedicated runner and general health nut, now if I try to run I land on my face. I don't like the therapy drugs, I have tried most of them "026 Avonex worked the best for me but I hated the needles and having to jab one into my leg every week, I felt alright so I railroaded my neurologist and stopped taking it. While I was on the drug I felt okay and I worked (usually 50 or 60 hours a week — I am a workaholic so for me that was fun) now I am on disability and stay home all week, which I don't like, it is boring.

That has been my experience, yours could be quite different "026 but if I had it to do over again, I would stay with the Avonex harpoon and keep praying for a cure. (Had I stayed on the drug when the cure came I might not have to deal with the damage that has already been done.)

So my advice is this: discus the available options with your neurologist pick one and try it, if it doesn't work try a different one. In the needle group I think Tysabri is the most effective, but it also has the scariest side effects (possibility of PML and death — but of the thousands that take the drug I think PML has only happened to 8 people and only 3 of them died, they monitor you pretty close.) Avonex is the next in line, huge IM needle and in the beginning the side effects Suck.
A lot.
But they do fade and the drug is very effective for most people.
There is also a pill option available now, the drug name is fengolomide (spelling is most likely wrong) and it's label name starts with a G but I don't remember it's exact name. Your neurologist may dig in their heels at this, the drug was just approved by the FDA for MS about a month ago. I'm treated at the Mellen Center of the Cleveland Clinic and my doc is dragging her feet on this.

What ever you decide I wish you well, you are the one that has to live inside your skin.View Thread

Posted byAndiJx

11 Replies | Reply | Watch This DiscussionReport This| Share this:Diagnosed but not on any meds This is a tough subject, I was diagnosed 16 years ago, and for most of the 16 years I have...

Includes Expert Content

Reply: The "silent symptom" that no one wants to talk abo...

Wow y'all "026 what a freaking relief to know I am not alone! I had no idea other people...

Posted by AndiJx

78 Replies | Reply | Watch This DiscussionReport This| Share this:The "silent symptom" that no one wants to talk about... Wow y'all "026 what a freaking relief to know I am not alone! I had no idea other people...

Reply: Does any body know about low level cerebral spinal...

Katie- I was diagnosed with MS 16 years ago, I sadly have no idea if low csf has anything to...

Posted by AndiJx

1 Reply | Reply | Watch This DiscussionReport This| Share this:Does any body know about low level cerebral spinal fluid and ms? Katie- I was diagnosed with MS 16 years ago, I sadly have no idea if low csf has anything to...

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