Here is the link to the order form for Tetrabenazine in the USA.

[www.nil.wustl.edu]

Anyone no another way of getting it, or has gotten it through a pharmacy here in the USA?

Misty

Misty here's a link for the latest news on Tetrabenazine sales in the United States. Prestwick Pharmacuticals has licensed Ovation to sell it and their website says it should be available by the end of this year. [www.ovationpharma.com] For the next couple of months the only way to get it is to order it from another country.

Marg

Thanks Marg!! It helped!

Misty

Tony?s neurologist emailed me to ask if we wanted to consider Tetrabenazine for his chorea. I thought hard about it for several days and decided that we would not use the drug because of the possible side effects. Tony?s balance is bad but he does not have too much actual chorea, and more importantly, his attitude is good and he enjoys his days.

I don?t want to prevent anyone from using the drug but I do think that we should consider it carefully. I know of one case personally in which the pHD changed drastically and became depressed and suicidal shortly after beginning it. Please be careful.

As you know, LaVonne Veatch Goodman M.D. at HD Drug Works does research on drugs and supplements and their value to patients with HD. LaVonne had this to say about Tetrabenazine:

[hddrugworks.org]

Each case is different, so please consider it carefully. Maggie



Edited 1 time(s). Last edit at 09/29/2008 05:48AM by Maggie.

I agree with ya Maggie... if what chorea he has isn't interfering with his well being...why? It doesn't help with balance issues anyway... falls were slightly elevated on TBZ than those off of it. It may be that they become over confident and not the a side effect of the drug... but whichever reason it doesn't help with staying upright. It can help get a glass to mouth or food to mouth and that sort of thing. If they are aware of those difficulties and are frustrated, or self conscience in public, that's when I would consider it's use.

Eric,
I think the key is to find a knowledgeable doctor who is willing to put in the time it takes to learn about a new drug. If Tony?s chorea were as bad as the man you saw at the hearings, I would probably give it a try.

We?ve been lucky on the chorea. Tony still does laundry and hangs clothes, (or reloads the dishwasher after I loaded it because he insists he does it better) and still ties shoes. As a test I had him tie my shoe recently, which is harder than his own since he is facing the shoe. It is like doing it in reverse. The first time it was too loose but it was fine on the second try. His mother?s chorea was much much worse than either of her sons?. Maggie

marg Wrote:
-------------------------------------------------------
> Misty here's a link for the latest news on
> Tetrabenazine sales in the United States.
> Prestwick Pharmacuticals has licensed Ovation to
> sell it and their website says it should be
> available by the end of this year.
> [www.ovationpharma.com] For the next couple
> of months the only way to get it is to order it
> from another country.
>
> Marg

You can also call Ovation at 888-882-6013 and talk to them about the availability of TBZ. I specifically asked her if they were working with Medicare to get it on the Medicare Approved Formulary and she assured me that they were. She also took my email address and promised to sent any new information on availability to me as the information develops.

I am not sure what Ovation will charge for TBZ but my current cost for Revocon (a TBZ generic from India) is about $1600 a year for my wife's 4 per day prescription.

My husband has been on Tetrabenazine for a few years now and it helped with his movements really well at the beginning. No side effects at all from taking it, he even overdosed on it once and it had no effect. They just stopped giving it to him until the levels had come down in his body and said although it won't do any harm it's best not to take so much of it at once.

Never take it over the internet though, make sure a Dr is aware of you getting it and make sure that Dr approves you taking it and monitors you when you start, preferably in hospital (although I understand in the USA this is not free) as depression is a common side effect of this drug. My husband was in hospital for the first 3 weeks before the Dr was satisfied he was safe to go home, he is reluctant to put our child on it but as a last resort will try if his movements become out of control and nothing else helps.

Please don't just order it and take it without a Drs guidance, my husband was lucky but others are not so lucky and it could be devastating, like any medication you should give it to your Dr and let them monitor you.

Debbie

You should not use this Tetrabenazine medication if you are allergic to tetrabenazine, or if you have severe or untreated depression, suicidal thoughts, liver disease, or past or present breast cancer.

Seems I remember xenazine will go generic sometime this year.

It will be interesting to see what the specialty pharmacies will do. It will be interesting to see if we can get the Rx filled at the local CVS. It will be interesting to see what the cost will be. It will be interesting to see if the same controls/warnings on prescribing continue. It will be interesting to see if Lundbeck continues to be involved with the community.

from the south of Maryland
Fred Lothrop

When the license runs out (for lack of a better word) , will some other company automatically start to produce it generically, or is there a chance it will still only be available through Accredo?

Yes, it will be interesting.

While I do think the price is way out of line, I do appreciate how much Lundbeck has funneled back into the HD community. HDSA is strongly supported by Lundbeck. Many of the local fundraisers and also the national convention are partly sponsored by Lundbeck. They have also worked hard with families to get payment assistance when insurance was not available.

Yes, they have profited well, but they have also given back well. I am glad that Xenazine has been available for my husband but I do look forward to it being more readily available to all.

Patty