I am also waiting for BG12 to be available. I just started Tysabri this week and really don't want to be in it. I took Rebif for 6 yrs and my Dr switched me because it stopped worked. I felt horrible the day of the infusion.

Woman at today's monthly MS support group has been taking the higher of the 2 doses for 3 years. Said after a couple months?..no more relapses and she's progressive. Impressed me.

At my last visit about 2 weeks ago, my neuro said it should be available in about 30 days!

I have not been around in a while. HORRIBLE summer for me. My neuro is "old school" and only rx's ABCR (which I have failed). I am now secondary progressive and don't respond to IV steroids. I went to a new neuro (my pain mgmt. Dr's wife) who is on top pf the latest.

First of all, I have an enhanching lesion on the brain (along with my usual load of c-spine lesions). She used ACTHar instead of IVSM and it's working. Plus it was a sub-q shot that I could do myself!

I also started on Gilenya, which is also oral. She thinks that is a better fit for me because it IS used in SPMS and is better for fatigue than Tysabri. My worst problems are pain (both neuropathic and spasticity, numbness, and fatigue).

It's been almost 2 weeks and I am noticing improvement (I think mostly from the ACTH right now) but I am positive for once in the last 2 years. I progressed A LOT just doing nothing and now I regret it.

I can't believe the cost of the meds. though. The ACTHar vial (5 ml) was over 26,000.00!! No wonder they use steroids instead. I am sure she had to fight Medicare and insurance to get it for me, but Iam glad I found someone who will.

The only side effects I have from the gilenya is a mild headache.

Sorry for the BOOK!!!

Kelly

Kelly,
I tried the Acthar gel too, one injection in the doctor's office. I had a reaction, and now I have a $26,000 vial (very small vial) in my fridge. I have no idea what to do with it.....and I can NOT make myself through it away, when it cost sooooo much!

I know, can you believe that tiny vial is so much and 5 days of IV infusions is WAY cheaper! I think they said that was like less than $500! Crazy!

ACTH used to be the Neuro's choice before Salu Medrol came along. Now some wiseass pharma has revamped it and upped the cost, for our pleasure.

I told my Neuro that I want the BG12.....I want off the shots. He said it comes out very soon and to give it at least 6 months to see how it fairs in the general M.S. population. He believes things look pretty good until they come out of trial.
So I agreed to wait....but if all goes well......I'm on the BG12. It looks far better than anything so far AND ITS A PILL!!!!
My Betaseron has doubled in price and when I asked my Neuro why his response was "because they can. They will try to get as much out of it before all the better drugs hit the market". Well, that gave me an attitude, however; BG12 will be extremely expensive too.

My neuro had the same take on it, give it a few months.

Yesterday, my neuro told me BG-12 has been delayed till next yr (early hopefully).
I had researched BG12 for 5 minutes before leaving for him and found a woman dr talking about it on youtube.

Yrs ago she prescribed Fumaderm for a patient with psoriasis. Patient also had MS. Mentioned to a friend how not only psoriasis improved, so did MS.

5 minutes of research yesterday had me tell neuro it's (BG12) been around for decades, but that's wrong after todays studies. BG12 is very close to Fumaderm, plus/minus a few somethngs.

Search Fumaderm BG12.