Bg-12
 

Any news on when this drug will be available?

I have read that it is the same drug used to treat psorasis....if that is true then why can't our neuros just order the drug for us off label?

Thanks :)

I think it is only being used for psoriasis in Germany and the UK. Maybe elsewhere in Europe too, but not here. The name of the psoriasis drug is fumaderm. If you do some searches on that you can read some people's experience with it for psoriasis. Side effects, etc. Although the psoriasis dose is higher than the BG-12 trial dose.

My understanding of availability is that the drug would, on average, be available 10 months after the FDA application was submitted. That happend the end of february, so December/January seems to be the target estimate.

In case you can't tell, I've been reading BG-12 stuff like crazy this weekend. If I get my MS diagnosis, I'm almost sold on holding out for BG-12 instead of taking any of the other DMDs.

Thanks, As you can see in my signature, I have tried various meds....for extremely short periods of time....but I have had reactions/allergies to them. I did take LDN for the longest time, 9 months, but during that 9 month period I developed 5 more brain lesions....so, my Neuro took me off of it.

I however, continue to think it is a really good med for MS...for a lot of the same reasons BG12 will be. It controls our endorphin production.

I see my Neuro tomorrow, I may ask again if I can take LDN until BG12 is released.

It seems the more studies that are done, the more they are realizing that the DMD's are not working like they first thought.

I think the BG-12 does more than just raising endorphins but it does that too like LDN. I'm sorry I want to write more but I am not having a good day today.

Sorry. Had some things to do outside in the hot sun yesterday and was busy paying the price while I wrote that. Anyway, on to BG-12...

Take all this with a grain of salt. I'm just a guy that was recently given the 'probable ms' diagnosis and all my info comes from basically a weekend of (obsessive) reading about the various treatments. It is a summary of what i read, I don't actually know what I'm talking about. :)

In addition to increasing endorphins like LDN, BG-12 has some other benefits from what I've been reading. Here are some quotes from a good article I found here.

Sounds pretty good to me, but does it work?

Sounds even better!

But the best part, to me, is the side effects.

Flushing, diarrhea, and abdominal pain (which stop if you come off the BG-12) all sound better to me than liver damage, deadly brain infections, depression, and heart stoppage.

Now there were still about 30% that backed out of the clinical trials because of the side effects, so this isn't going to work on everyone. But the side effects are not going to cause permanent damage. And they get better with time if you can hang on and continue the treatment.

However, I had also read that some of the other MS drugs were declared 'safe' after their trials, but turned out to be much less safe than advertised. The thing about BG-12 though, is that it has been in use for years for psoriasis. We know that people have been taking it - safely - for a long time. If you go do some fumaderm searches you'll see some great results for psoriasis and side effects that match the promises. Flushing, diarrhea, abdominal pain. All improving with time if you can continue the treatment. And nothing else. Unlike the other MS drugs, this one has already been 'in the field'.

And you don't have to inject it! Sounds like a winner to me. Time will tell, but I'm almost sure this is where I want to start my treatment if I get the MS diagnosis.

Also, wasn't LDN successfully used for psoriasis too? Interesting side note.

This BG12 sounds like another hyped up Biogen big pharma MS Med for RRMS only. My question has always been, at least since I grew out of the RRMS class, is...Why do the DMDs not help all peeps with MS???:rolleyes:

The answer(IMHO)is...that they don't help peeps with RRMS either. RRMS is self healing, between remittances and remissions, so it's hard to tell if the med is helping or if the disease is just doing it's thing.:rolleyes:

My little LDN nightly capsule, for the last 9/10 years, has worked better for me:), in slowing this disease than the DMDs, that just made me sicker and rushed me out of RRMS to SPMS..:mad:

I think they're all a bunch of crap, for most peeps, with the exception of Tysabri, which I believe, in some, does halt/slow the disease.

Steping down off of my soap box..:p:o

Well I'm coming at this from the exact opposite end of it as you and trying to make sense of everything. Could it be just hype? Of course. But it has had remarkable results when it comes to psoriasis, and I find it interesting that LDN has also had great results with psoriasis. And they both raise endorphins.

If they understood the cause of this disease, there would probably better options. But they don't. For me, not even being diagnosed yet, I am not ready to give up on them, but I am very leery of the other DMDs. My readings on them have brought me to tears thinking about the possible consequences. Frankly, many of them sound like poison to me. I am certain BG-12 is no cure. But I am also certain, based on its use for psoriasis, that it has the least scary side effects by a mile.

And if something might work, and that something isn't going to do harm (like some of the other DMDs might), then, for me, it is a no brainer.

And up until now, I'm the guy who doesn't take more than aspirin if he can help it.

I hear ya!! I went to my neuro today, and we discussed BG12. He is hoping it will be available by the end of the year. He is more excited about the Stem Cell research that is being done in trials right now.
He did agree to allow me to go back on LDN until BG12 is available....so I am very happy for that.
Will have to call Skip's in the morning.

IMO, ALL the dmd's are a poison. But like you said, if something might work.... All these meds do some kind of harm to us. Out of all the dmd's available now, copaxone is the one with the least amount of side effects. Its still a chemical, poison if you will, but I am trying it. Nothing is a cure. Just hopefully something to slow down the inevitable. Thats all Im hoping for. When the CRAB's were introduced, I asked why isnt there a pill for this cuz I HATE shots. Now there is a pill, but it can kill you!! Give me a needle, and Im ok with that when looking at what that little PILL can do to you. Im not big on any meds for anything!! If C doesnt work for me, Im done with dmd's. Beta and C are enough for me. No more. I dont trust anything they say about these drugs anymore. It was like heaven when G came out, then 11 people lost their lives. Ty was also soooo great, then the brain infections happend. Im not trying to scare anyone, I do personally know some folks who take G and Ty and they are doing well on it, but its definately not for me. Hopefully for everyone waiting on BG-12, it will work for you's. For me, BG-12 is not in my dmd vocabulary. Dont mean to be a downer , or get anyone mad, that was not my intent.

I do not want to diminish the experiences of those of you who have already walked this path, but I don't want to just give up on a chance to slow this disease either. I have to balance some sense of hope with the reality of how badly some of these meds have impacted people. It doesn't seem like an easy task.

I think my strategy is going to be something along the lines of trying everything I can that doesn't have very serious risk attached. I'm thinking Swank or another ms diet, supplements, exercise, other lifestyle changes, and the less dangerous meds. I definitely don't have all of this fleshed out in my head yet.

Like I said, the one thing I like about BG-12 is that it has been in use for a long time. Whether it helps MS long term or not is still an unknown in my mind, trials or not. But I think we have a realistic idea of the bad that comes with BG-12, and it looks much less bad than the other DMDs.

bg12
 

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!

Another oral option
 

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!:eek:

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.:rolleyes::mad::rolleyes:

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.

Grrrrr, they can't find anything new on their own, so Big pharma is doctoring up old somewhat good meds, under another name, so they can charge the big bucks again.:mad:

You just watch, one of these days, they'll do the same trick with LDN..:rolleyes: Greed greed greed.:eek:

Yeti, I'm one person who succeeded with the Swank MS Diet. I know i succeed with it because of the bad things that happen (symptom wise) when I get off it, which I occasionally do for various reasons. Now does the Swank diet help me for another reason than MS? I don't know, but Dr. Swank's idea was that MS was an attack on fat cells, including myelin, an autoimmune attack on them. Now in my case it is possible that I react to fat from other reasons (with neuro symptoms). I have no way to tell and no one to ask. I don't know any neurologists whom I could ask as they would not know.
You may ask, do I have myelin damage shown on MRI? Yes, many years ago when I first got a dx. Also Visual Evoked Response and Visual Fields tests, also abnormal, eye symptoms later normal on next tests, although Myelin remained damaged (and spots moved) over the several years I was going to MS neurologists. I finally quit going to them because I got another dx which can produce neuro symptoms although it can produce other ones as well. But I didn't quit because I lost my MS dx--no doctors still varied on whether I had MS or not. No one was sure. But I did have the typical brain spots we all have heard about and which most of us have. I'm old now, but when I got my dx it was a LONG time ago, almost 30 years. And all that time I've been on the Swank. And all that time I got worse if I got off it.
Now I have a rare blood disease called Polycythemia Vera, so all diagnostic bets are off as to what is causing what. But I am still on the Swank diet.
Dr. Swank also thought that "something is missing in MS blood" but he was never able to finish research on that. He was, after all, very old, and underfunded. The underfunding of Dr. Swank is not my idea of intelligence.