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-   -   ARA 290 for the Treatment of Sarcoidosis-associated Small Fiber Neuropathy (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/231085-ara-290-treatment-sarcoidosis-associated-fiber-neuropathy.html)

Cliffman 01-14-2016 03:52 PM

ARA 290 for the Treatment of Sarcoidosis-associated Small Fiber Neuropathy
 
I found this and started to do more research; http://www.prnewswire.com/news-relea...280635872.html

http://araimpharma.com/press/

http://www.ncbi.nlm.nih.gov/pubmed/24136731

Cliffman :)

mrsD 01-14-2016 04:51 PM

Notice it is for "for treatment of Sarcoidosis-associated Small Fiber Neuropathy (SFN).". If this approval only applies to this, other diagnoses will probably be rejected by insurances. And you can bet this product will be extremely expensive when it comes out.

We'll just have to wait and see. sigh.

bluesfan 01-14-2016 11:56 PM

Thanks for this Cliffman,

It looks promising and the company seem to be well on the way with clinical trials. It's interesting to note that it's also being evaluated for treatment of SFN due to diabetes (last paragraph in first link). I wonder if it might eventually be extended to SFN associated with other autoimmune diseases. It was also good to see that the US clinical trials are being done at the Cleveland Clinic which I've seen good info from about Peripheral Neuropathy.

However as MrsD says being a new treatment it will probably be very expensive - but the hope is it may be a viable medication if one's options are limited due to side effect reactions with other meds.

Please keep us posted if you see any updates.

DavidHC 01-15-2016 11:07 AM

Thanks again for this, Cliffman. I'll look more into it. It's important that at least there is one study for its use for another condition, for diabetes. And I imagine eventually it will be extended to or approved for general autoimmune use or at least for other SFN causing conditions. But who knows for sure if/when that will be the case. Regardless, it will surely be expensive.

I also found it interesting that improvement was seen with short term use, only 28 days in this type 2 diabetes study:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4365069/

Thanks again, Cliffman. This looks quite promising, though I'm sure we all wish it were cheap (read 'free'!) and currently available. I know... :)

I'll look more into it. Yes, anyone, please post any updates or further links.


Quote:

Originally Posted by Cliffman (Post 1193271)


beatle 01-15-2016 09:02 PM

Ara-290
 
Here is another thread for ARA-290 with some links:

http://neurotalk.psychcentral.com/thread224756.html

Watching the very slow although positive progression of this and VM-202

Cliffman 01-16-2016 09:13 AM

Quote:

Originally Posted by beatle (Post 1193579)
Here is another thread for ARA-290 with some links:

http://neurotalk.psychcentral.com/thread224756.html

Watching the very slow although positive progression of this and VM-202

Does anyone know if it's going to be years down the road or could this come to market in a shorter time frame?

Cliffman :)

beatle 01-16-2016 11:40 AM

Anything is possible but typically it takes several years.

madisongrrl 01-18-2016 08:56 AM

Quote:

Originally Posted by Cliffman (Post 1193652)
Does anyone know if it's going to be years down the road or could this come to market in a shorter time frame?

Cliffman :)

They are completing Phase IIB and should have hopefully started Phase III. So if that continues to go well, then it will probably be a minimum of 2-3 more years.

LouLou1978 01-18-2016 10:42 AM

Quote:

Originally Posted by madisongrrl (Post 1193963)
They are completing Phase IIB and should have hopefully started Phase III. So if that continues to go well, then it will probably be a minimum of 2-3 more years.

I think I heard it was 2019 it would be available

donamel 01-23-2016 07:00 PM

Quote:

Originally Posted by LouLou1978 (Post 1193979)
I think I heard it was 2019 it would be available

Wonder if I will still be alive in 2019. I will be 68 this year and have suffered from sarcoidosis for more than 40 years. Tired of it and all of its crazy complications. There is much more known about diabetes than sarcoidosis, hence the title "orphan disease." No matter, whether related to sarcoidosis or diabetes, anyone with autonomic small fiber neuropathy needs help. Don't know much about how small fiber neuropathy works with diabetes patients. Does it also mess with heart beats, temperatures and cause orthostatic hypotension, along with pain, numbness, etc?

donamel 01-24-2016 12:11 PM

Cleveland Clinic is Best
 
I moved to Georgia unbeknownst the issues with receiving adequate health here. Have been back to Clinic several times since. They diagnosed the pulmonary sarcoidosis in 2010 and had been treating me for hepatic sarcoidosis prior to that. They now diagnosed the ASFN in 2014. No one down here had a clue. I think it is wonderful that the Clinic is involved in this. They practice what I consider aggressively while down here it is so conservative that one could easily die. If I have crazy stuff going on again, even though I'm too poor for a plane ticket, I'll have to find my way back to the Clinic.

donamel 01-25-2016 09:11 PM

Crazy Stuff Back Again
 
Well, the crazy stuff with the sarcoidosis is back again and I'm too poor to get a plane ticket to the Clinic. Such is life! As cold as it is in Cleveland, should have stayed there to get better medical treatment, but then didn't know how bad it was down here. What is interesting is how many people live to be quite old here in Georgia! Hum!:)

Cliffman 01-26-2016 11:07 AM

Quote:

Originally Posted by donamel (Post 1195185)
Wonder if I will still be alive in 2019. I will be 68 this year and have suffered from sarcoidosis for more than 40 years. Tired of it and all of its crazy complications. There is much more known about diabetes than sarcoidosis, hence the title "orphan disease." No matter, whether related to sarcoidosis or diabetes, anyone with autonomic small fiber neuropathy needs help. Don't know much about how small fiber neuropathy works with diabetes patients. Does it also mess with heart beats, temperatures and cause orthostatic hypotension, along with pain, numbness, etc?

Yes, it can and does in my case.

Cliffman :)


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