Any experience with Ammonium Tetrathiomolybdate ?

When I am reviewing literature on WD, I noticed that the drug Ammonium Tetrathiomolybdate is considered side effects-free, yet, it is not being prescribed. After investigation, I found out that this is an "orphan medicine" which means that no drug company is promoting it or doing trials to be accepted (FDA approved). Anybody knows what is going on? Is there a way to know whether this drug is truely effective and side-effects-free as indicated? I also read that it may be used to treat some forms of cancer too.
Any information (doctors who are familiar with this, pharmacies etc.) will be highly appreciated.

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I was a guinea pig(#11 I think) on TM in November and December of 1991 at the University of Michigan. It was an 8 week trial. TM is an extreme chelator, and unlike those who spend a year or more on syprine and the like...after 8 weeks on TM I was on maintenance zinc for life. I do not feel that I suffered any increase in nausea, etc....from the TM. If you are recently diagnosed, you might want to contact U of M about Tetrathiomalybdate.

I switched to Gluzin a few months back, as galzin caused such upset it interfered with my compliance...then to picolinate(ineffective)>>Gluzin rocks. Minor stomache upset, I feel better than I have in years.

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Why do you say zinc picollinate was ineffective ? did you measure your 24 hour urine zinc levels, ? how is gluzin more effective ?

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Does one need a prescription for TM? I also investigated this, and asked the Neurologist to investigate the drug for me but he would not .

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Gregor:

I contacted UO Michigan (same people who coppertop wrote about) but I havent got any feedback. From my research, a company named Pipex Pharmacueticals is trying to release the medicine under the brand name Coprexa, but FDA rejected the approval (not sure what the reason was). Clinical trials were done under US government grant because of the small number of people who have the disease (meaning drug companys wouldnt be interested because of the small profit potentials, which is why it is an "Orphan drug"). There are similar grants in Europe under the "Orphan drugs" programs, but apparantly nothing has been released to the market.

I read too many positive experiences about this drug, including possibility of cancer treatment, so I will appreciate it if anybody gave us feedback on the status of this medicine. I would like to know also why FDA rejected the approval. My son is only 3 year old and he has to live all his life with treatment and drugs. I am also exposed first time in my life to a rare disease which is easy to treat, but difficult to deal with because of the small number of patients.

Thanks

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zinc picolinate has rice fillers in the capsules...i started to have hand tremors after 2 years on it. couldn't carry coffee in my left hand...;-)~
after just two months on gluzin they have almost completely disappeared. i am not getting my levels done every quarter or even year. i was dragged to doctors for ten years as a child and ended up diagnosing myself at the age of 21( though granted i had access to medical books as i was working for obstetricians filing claims). I am not suggesting my way is the way for anyone but myself...but rest assured i am very healthy, working out 3-5 days a week. i had my levels done three years ago before trying picolinate and my internist only had concern over my low potassium....gluzin was recommended on the wda newsletter...so here's hoping they know what they are doing!

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How do your labs look on Gluzin? I assume you have been on it long enough to determine if you are in good copper control. Has anyone else out there tried it yet?

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only been on it two months...i will let you know.

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