Where to find Suramin (Germanin)???

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Diana
Posts: 3
Joined: Wed Jul 19, 2017 5:05 am

Where to find Suramin (Germanin)???

Postby Diana » Wed Jul 19, 2017 5:30 am

Hello everyone.
I am a mother of 2 identical twin girls with autism. One of them is severely affected.
I am sure you all heard of the success of the drug Germanin (Suramin) in the first clinical trial by Dr. Naviaux.
I live in London and here is not licenced. Been thinking to travel in Africa because in Europe is impossible to find.
If any of you have any info how to find this drug, would be sincerely appreciated!
Thank you in advance

Nikkie111
Posts: 321
Joined: Thu Sep 24, 2015 6:26 am

Re: Where to find Suramin (Germanin)???

Postby Nikkie111 » Wed Jul 19, 2017 4:08 pm

It seems it's made by Bayer so surely you can find it in Germany
But the issue is not where to find it, it's who will administrate it as its intravenous. Possibly Google a German doctor for asd and pay them quick visit to see if they can and if they should administer it
It's probably effective as its killing worms, parasites etc

Good luck

Diana
Posts: 3
Joined: Wed Jul 19, 2017 5:05 am

Re: Where to find Suramin (Germanin)???

Postby Diana » Wed Jul 19, 2017 6:06 pm

Thank you Nikkie!
When I was in Germany I visited more then 3 pharmacies and was told that it was not in the German market from years.
Even the hospitals have to apply to the WHO (world health organization) for any emergency case of sleeping sickness.

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Where to find Suramin (Germanin)???

Postby FatherOf2 » Thu Jul 20, 2017 7:29 pm

You are probably looking for Suramin because of Dr Naviaux research. You should be aware that Suramin is not intended for long term use due to serious side effects of organ damage. Dr Naviaux used it in his studies just to validate his theory that blocking P2X receptors (by Suramin) can reduce ASD symptoms with a hope that some pharma companies will develop safer drugs targeting the same receptors. Actually, some companies are developing P2X inhibitors, but for rheumatoid arthritis, which is a much bigger market than autism. The improvements seen in Dr Naviaux human study disappeared after about 1 month, which is roughly how long Suramin stays in the body. Dr Naviaux knew about this 4-5-week therapeutic window of Suramin. I don't understand how anybody would subject their child to a treatment that has greater than 50% chance of adrenal cortical damage (https://www.wikidoc.org/index.php/Suramin). Such risk would be justified if Suramin cured ASD, which is not the case. If you want to see a similar temporary effect to Suramin, you are much safer trying corticosteroid therapy such as Prednisolone (https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-14-70). If Dr. Naviaux wanted to run fair trial of Suramin and be less biased towards his theory, he would have run it in parallel with Prednisolone, blind. I bet he wouldn't be able to tell a difference between the two groups of patients.

Diana
Posts: 3
Joined: Wed Jul 19, 2017 5:05 am

Re: Where to find Suramin (Germanin)???

Postby Diana » Fri Jul 21, 2017 4:36 am

Hi fatherof2,
The fact that dr. Naviaux is preparing another clinical trial with a very large group of children means that this drug has potential for treating autism. They will administer Germanin every 4 weeks for 4 months. Do not forget that adrenal cortical damage is not a side effect of e very low dose. As for other PX2 inhibitors I doubt that they can work because Germanin inhibits A large number of receptors including P2Y

ElroyTes
Posts: 1
Joined: Fri Jul 14, 2017 10:00 am

Re: Where to find Suramin (Germanin)???

Postby ElroyTes » Fri Jul 21, 2017 4:50 am

i've seen it for sale online in some shady looking pharmacies but I don't really trust them. I guess you have to get it from a doc.

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Where to find Suramin (Germanin)???

Postby FatherOf2 » Fri Jul 21, 2017 10:39 am

Diana wrote:Hi fatherof2,
The fact that dr. Naviaux is preparing another clinical trial with a very large group of children means that this drug has potential for treating autism. They will administer Germanin every 4 weeks for 4 months. Do not forget that adrenal cortical damage is not a side effect of e very low dose. As for other PX2 inhibitors I doubt that they can work because Germanin inhibits A large number of receptors including P2Y

I personally met with Dr Naviaux about 2.5 years and spoke to him for 1hr (I live in San Diego where he works). He tried to convince me to participate in the first study. I decided not and don't regret. In that meeting he said that Suramin will never be used to treat autism because (1) it has dangerous side effects with long-term use, and (2) inconvenient way of delivery through IV dropper (you have to spend hours in a hospital just to get a single dose). He said that his goal was to show that inhibitors of P2X receptors can temporarily improve symptoms of autism to encourage pharma companies to develop a safer and oral drug to do the same. In order for Suramin to become a drug for autism and be prescribed by doctors, it needs to be approved by FDA first for that specific condition, which takes at least 7 years of multiple safety and efficiency studies and hundreds of millions of dollars, which Naviaux doesn't have. Just to conduct his first study on 10 children, he went into debt of $500k. He actually asked me to donate $10k. You can contact him through email and ask him if he would advise Suramin treatment. Also read here: https://www.ncbi.nlm.nih.gov/pubmed/3034953


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