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SURAMIN

C

Clair

New Member
Hi , has anyone have experience of using Suramin for ASD symptoms? Please don't give me
"accept asd as it is; it is not to cure ; society needs to change bla bla bla..." . Sure society needs to change and I am not talking about you or your asd as each individual is different . When your child is non verbal, when your child tantrums , when your child can't sleep etc , you want to help your child. So anyone know about Suramin please ? thanks.
 
This post is not an endorsement of suramin.
I looked up material, because I'd never heard of suramin.

"Suramin is a 100-year-old drug developed to treat African sleeping sickness and river blindness. Though it has been investigated for other diseases, including cancer, it is not approved for any therapeutic use in the United States.

However, a small, randomized clinical trial conducted by Robert Naviaux, MD, PhD , professor of medicine, pediatrics and pathology, and colleagues at University of California San Diego School of Medicine have found that a single intravenous dose of suramin produced dramatic, but transient, improvement of core symptoms of autism spectrum disorder (ASD). Currently, there are no drugs approved for treating the core symptoms of ASD.

More broadly, the trial findings support the “cell danger response theory,” which posits that autism and other chronic conditions are fundamentally driven by metabolic dysfunction—and thus treatable. Naviaux and his co-authors propose larger, longer clinical trials to assess suramin (or similar drugs) as an ASD treatment.

Special note from the researchers: Suramin is not approved for the treatment of autism. Like many intravenous drugs, when administered improperly by untrained personnel, at the wrong dose and schedule, without careful measurement of drug levels and monitoring for toxicity, suramin can cause harm. Careful clinical trials will be needed over several years at several sites to learn how to use low-dose suramin safely in autism, and to identify drug-drug interactions and rare side effects that cannot currently be predicted. We strongly caution against the unauthorized use of suramin.
Suramin and Autism - UC San Diego Health

https://www.rxlist.com/consumer_suramin/drugs-condition.htm

"Suramin remains controversial. Is its polypharmacology a liability or an asset? Is it toxic or protective? Dated or timeless? Whatever the verdict on suramin, there is hardly another molecule with as many biological activities. The list of potential targets is indeed impressive, and the publication stream on suramin is not stagnating. The large majority of papers are not about trypanosomes or trypanosomiasis. The list of potential targets has to be taken with a grain of salt, though, since the negative charges of suramin, and its promiscuity in protein binding, can cause all kinds of artifacts."
https://journals.asm.org/doi/10.1128/AAC.01168-19
 
I understand.
What I figure is that if I haven't heard of suramin,
it's possible other people haven't either.
 
I've never heard of it, so thank you @tree for posting the information.

Having read the info, I won't be joining the queue to try Suramin.

Good luck OP. I hope it works out for you.
 
The most useful thing I read in your post is not about Suramin, but what I sense as you advocating for your child. I hope your child receives the care and support you wish for.
 
After reading it (well at least as much as I can understand) I think the study was only an indication of something to look at further and not really an indicator yet, of a medication that works. The researchers seemed to say that as well. The study sample was very small (only 5 individuals) and the measuring criteria not very strong. Under such conditions 'false positives' are fairly common.

But it is something to keep an eye out for, as well as any other new studies. I remember when the earlier study using mice came out and the conclusions were quite spectulative. This new study at least tells me they are continuing to follow this line of inquiry. So often you see an intersting study and then hear nothing more about it for years or ever.
 
If it works, I'd try it.

I want to see a much deeper investigation though. If metabolic failures are the ultimate cause of autism, those issues would affect the structure of the brain. The drug would not change the brain, only supply missing chemistry that the brain couldn't. That's why it is transitory in effect.

Autism would then be like type 1 diabetes. Getting insulin is not a cure but staves off the worst of the deleterious effects. You're still a diabetic and even with very close monitoring, you will have some problems.
 
I don't know about all that. Really research plants before you ingest them. Many have dangerous alkaloids that can permanently damage your liver and kidneys.
 
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