MS in the news, good and bad

[MS TOO]

It's been an interesting MS news week both good and bad. The first I read was tough on me. Clive Burr, the first Iron Maiden drummer died at the age of 56. He was diagnosed with MS in the 1990's. This was tough on me because, I was a big Iron Maiden fan in my youth, I too was a drummer and I am in my 50's so I really had some emotions over this but,.....

Then I hear about Chris Wright, just diagnosed in 2011, being offered a 10 day contract to play pro-basketball for the Dallas Mavericks! Chris has been playing in other leagues but has a chance to prove himself in the big leagues becoming the only known MS patient to play pro-basketball. This one lifted my spirits back up as maybe it shows that the new treatments are helping MS patients live fuller and hopefully longer, healthier lives.

Anyone else waiting to hear that BG-12 gets the final approval soon? My neuro seems pretty excited about the possibilities. I'm use to the daily shot of copaxone but it might be nice not to have to take a daily shot if BG-12 works as good as I hear it does.

Let's see what this week has in store for us, have a great week everyone!

[Tawanda]

It's been an interesting MS news week both good and bad. The first I read was tough on me. Clive Burr, the first Iron Maiden drummer died at the age of 56. He was diagnosed with MS in the 1990's. This was tough on me because, I was a big Iron Maiden fan in my youth, I too was a drummer and I am in my 50's so I really had some emotions over this but,.....

Then I hear about Chris Wright, just diagnosed in 2011, being offered a 10 day contract to play pro-basketball for the Dallas Mavericks! Chris has been playing in other leagues but has a chance to prove himself in the big leagues becoming the only known MS patient to play pro-basketball. This one lifted my spirits back up as maybe it shows that the new treatments are helping MS patients live fuller and hopefully longer, healthier lives.

Anyone else waiting to hear that BG-12 gets the final approval soon? My neuro seems pretty excited about the possibilities. I'm use to the daily shot of copaxone but it might be nice not to have to take a daily shot if BG-12 works as good as I hear it does.

Let's see what this week has in store for us, have a great week everyone!

A 10 day contract doesn't sound like much, but alas, I know nothing of pro sports. I wish him all the luck in the world though!

I, too, am ready to trade my Avonex for BG-12. For one thing, I'm also sick of the shots and Avonex really aggravates my psoriasis.

Do any of these "M.S. Slower Downer Drugs" actually work? I honestly don't know. Is there a merciful God? I honestly don't know. All I know is I have to have faith, even blind faith, in my drugs and in my God or I don't think I could cope with having M.S. on any level whatsoever.

[fishead]

Tawanda,

My faith has always led me to believe there is a merciful God. I have always believed he is, but after reading your post, I thought hard about that. I really sat and pondered it. I really did not come up with a yes or a no answer to "Is God merciful". That made me sad, because I questioned God, but also made me ask the question "why does God allow us to suffer?", and that question I cannot answer and will never be able to. I still believe that God is good.

[Tawanda]

Tawanda,

My faith has always led me to believe there is a merciful God. I have always believed he is, but after reading your post, I thought hard about that. I really sat and pondered it. I really did not come up with a yes or a no answer to "Is God merciful". That made me sad, because I questioned God, but also made me ask the question "why does God allow us to suffer?", and that question I cannot answer and will never be able to. I still believe that God is good.

No hard and fast answers in this department. Frank Sinatra said (and later the Beatle's sang), "whatever gets you through the night". I teach CCD and sometimes I feel like such a fake. Then I remind myself that it's OK if I don't buy the entire ball of was...even my priest probably has his "moments".

[Jules A]

Tawanda,

but also made me ask the question "why does God allow us to suffer?", and that question I cannot answer and will never be able to. I still believe that God is good.

This is my biggest issue with the thought of an almighty although I would agree that if there is a God he/she has good intentions.

[TLC_31]

All the reports about Clive Burr note that he was suffering from secondary progressive MS, but they say simply that he died in his sleep. Perhaps another underlying condition was to blame, particularly if he had lived the stereotypical hard rock lifestyle.

Chris Wright never left the bench in his first or third games, both Dallas losses. He played the final 40 seconds in a Dallas win against Cleveland, scoring a layup on his only shot attempt, and hopefully he plays tonight (7:30 Eastern time) at Atlanta. Even if never plays another minute, he’s reached a pinnacle that many young basketball players can only dream of.

Tecfidera (BG-12) is still 10 days away from possible approval and then likely a couple more weeks from the marketplace. I won’t switch to it at least for a year, but I’m still excited that we’re counting down in days now instead of months.

[Tawanda]

why the delay?

All the reports about Clive Burr note that he was suffering from secondary progressive MS, but they say simply that he died in his sleep. Perhaps another underlying condition was to blame, particularly if he had lived the stereotypical hard rock lifestyle.

Chris Wright never left the bench in his first or third games, both Dallas losses. He played the final 40 seconds in a Dallas win against Cleveland, scoring a layup on his only shot attempt, and hopefully he plays tonight (7:30 Eastern time) at Atlanta. Even if never plays another minute, he’s reached a pinnacle that many young basketball players can only dream of.

Tecfidera (BG-12) is still 10 days away from possible approval and then likely a couple more weeks from the marketplace. I won’t switch to it at least for a year, but I’m still excited that we’re counting down in days now instead of months.

Thanks or the update! Just curious why you will be waiting for a year, though. I won't make an extra neuro. appt., but I will be asking about making the transition immediately at my next regularly scheduled visit. Since this drug has been around in Europe and began as psoriasis treatment in Germany in the 50s, I am more comfortable with this drug than anything else that's come out since I was diagnosed. I was totally freaked by the vein therapy and initially, Tysabri, although it is starting to scare me less and less the longer it's been around.

[October22]

tweaks?

So will BG-12 be the same drug that they use in Germany and for psoriasis? I'm wondering if they add to or tweak it before they apply for FDA approval for MS use?

I'm not saying this right. My neuro said a new drug usually takes about a year to find out all the lovely side effects (like the ones you see on the lawyer commercials) so I'm wondering if this "compound" will be the same that's been around forever or did they muck it up?

[Tawanda]

So will BG-12 be the same drug that they use in Germany and for psoriasis? I'm wondering if they add to or tweak it before they apply for FDA approval for MS use?

I'm not saying this right. My neuro said a new drug usually takes about a year to find out all the lovely side effects (like the ones you see on the lawyer commercials) so I'm wondering if this "compound" will be the same that's been around forever or did they muck it up?

I guess the "Muck Up" theory would be a good one to discuss with my neurologist! Of course, even if it is the same 'ol formula that has worked well for a trillion other people, I may be the one person it kills! We all are risk-takers to a certain degree...that's the nature of life, with or without M.S. (although I'd venture to say M.S.ers will take more risks than a healthy person). Waiting a year is prudent, though, unless you are completely desperate (although personally, I'm not sure which camp I'm in at the moment-as my DD needs me less and less, I feel more comfortable crawling out of my comfort zone when it comes to trying newer stuff!).

My neuro. did say to pass on the first pill that came out and wait for the next one (the one we have been discussing). I know that Biogen stock has shot up because of this anticipated "new" M.S. pill release. I feel like I've been waiting for the "Great Pumpkin" for the last 10 years! Move over, Linus!

[fishead]

So will BG-12 be the same drug that they use in Germany and for psoriasis? I'm wondering if they add to or tweak it before they apply for FDA approval for MS use? ...

I forgot that BG-12 was a psoriasis treatment. I find that interesting, as I had a unique convo with my neuro today. My rheumatologist told me to ask my MS-Neuro about drugs she wants to give me for my recently diagnosed "psoriatic arthritis". What makes me laugh is that I HONESTLY never had psoriasis until one yes that is 1 month after my diagnosis of psoriatic arthritis. I think my body finds it funny to mess with my head (feel free to laugh, I certainly am).

OK back to convo between me and Neuro: One drug I was told to ask my Neuro about taking (for the Psoriatic Arthritis = P.A.) was"Leflumoid" which is a metabolite (chemically similar-ish) to "Teriflunamide" aka "Aubagio". So Neuro wants me to choose that particular drug for my P.A. and see if it does not also help my M.S.. I have been on nothing for my M.S. since 9/2011, so there should be no confusion if the Leflumoid does show to help my M.S.

Wish me luck on this "kill-2-birds-with-1-stone" treatment. I will keep everyone updated on this, in hopes that it may help someone ELSE who has the same 2 diseases. I will entitle any updates "MS and PA" (or will spell-out Psoriatic Arthritis).