Aimspro

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MaxEidswick

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>, the drug I am taking is called Aimspro, by Daval International

anyone heard of this? trying this? an hp colleague in the uk says:


"Yes, it's definitely helping me. Slowing things down.

I'm still working full time out of the UK."
 
nothing on ALSTDI, one match on Patients Like Me, single UK ALS user, stopped after 1 month with no indication why or comment as to effectiveness...
 
I believe it is ( or recently was) in phase 2 trial in the UK. Think that it might be geared more towards MS? But it is not available to us right now anyway. Ask your neuro if it is coming soon or at all
 
new info wbbs:

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Mr. Eidswick,
Aimspro received Orphan Drug Designation from the FDA back in 2011 but only for the treatment of systemic sclerosis (scleroderma). This Orphan Drug Designation grants special status to medication to treat a rare disease or condition upon request of a sponsor and if the disease or condition for which the drug is intended affects fewer than 200,000 people in the United States. In addition, the drug to treat the rare disease or condition must meet strict FDA criteria. There are currently clinical trials with Aimspro in Multiple Sclerosis. Aimspro has already achieved TGA Orphan Status in Australia for the treatment of both ALS and Krabbe Leukodystrophy (Krabbe's disease). In the UK, Aimspro is only available under their “compassionate-use” regulations and that means patients have to pony up the money instead of insurance.
I pulled up the FDA list of Orphan Drug designations for neurology and did not find Aimspro on the list. I will ask Dr. Appel what he knows about the drug and ALS.
Best wishes,
Luis

Luis F. Lay, Jr.
Academic Senior Research Coordinator
Houston Methodist Research Institute
Houston Methodist Neurological Institute
6560 Fannin, Suite 802
Houston, Texas 77030
Tel: (713)441-3057
Fax: (713) 793-7273
Cell: (713) 501-8676


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There was a farily recent US-based PhII but for a disease called "diffuse cutaneous systemic sclerosis (SSc)".

That search did uncover an ALSUntangled report #7 from way back in 2010. They recommended further study but were otherwise less than enthusiastic.

There is also mention in the ALSuntangled report that the owning company, draval, had obtained orphan drug status for ALS in 2007...
 
Aims pro costs > 500 dollars per week and the patient has to pay for it (in the UK). In Australia it is apparently available for ALS patients
 
I have requests in both the va and appel. our hp colleague really believes it is slowing thingsdown.
 
Don't know this one but I can ask my Aussie CALS group if they have heard of it?
 
>Don't know this one but I can ask my Aussie CALS group if they have heard of it?

good ... it is apparently accepted down under. see if you can get any results from anyone.
 
Looking at the site about the drug, it is kind of accepted here.

It's not on the PBS, so anyone wanting to try it here would have to pay high dollars to use it.

I've asked in the aussie carers group and no one there had heard of it so far. So I'm not sure what it means by available here, there could be some Neuro's in some clinics that are giving it a go for rich patients...
 
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