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ARA-290 / Cibinetide to treat SFN/POTS + modulate Innate Immune Response

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
ARA-290 / Cibinetide
Already discussed briefly in 2015
https://forums.phoenixrising.me/threads/fast-track-approval-for-sfn-drug-ara290.36976/

ARA-290 is one of those compounds that has proven to produce similar results to IVIG for SFN Patients.
As I have read in a recent study that up to 70% of severe ME/CFS patients suffer from Small Fiber Neuropathy and autonomic dysfunction (most of them paired with POTS!) this could be a symptomatic treatment for a huge portion of our suffering.

Safety profile seems excellent so far.
It mainly works as an IRR (Innate Repair Receptor) Agonist and enables regrowth of small fibers and nerves. But it has also shown to act as a modulator of the innate immune system

This is extremly interesting for ME/CFS - directly targeting the innate immune system.

Cell Studies regarding Innate Immune Responses:
https://pubmed.ncbi.nlm.nih.gov/21410562/
The erythropoietin analogue ARA290 modulates the innate immune response and reduces Escherichia coli invasion into urothelial cells

https://www.nature.com/articles/s41598-017-13046-3
Cibinetide dampens innate immune cell functions thus ameliorating the course of experimental colitis


ARA-290 marketed as Cibinetide
Good summary about the study results on Youtube.:
Small Fiber Neuropathy and ARA-290 Results

Safety and Efficacy of ARA 290 in Sarcoidosis Patients with Symptoms of Small Fiber Neuropathy: A Randomized, Double-Blind Pilot Stud
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563705/



A quick overview I have posted on Reddit:
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
Another member and I have started taking it two weeks ago but ran into problems with solubility of the compound (0.22mg/ml) - we probably found a fix for this but will have to take a break and wait until our new supply arrives.

Usually studies indicate that improvements can already happen at the 4 weeks mark. Probably something that needs to be taken for many months, just like IVIG.
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
No I will actually stay with ARA-290 for 3-6 months.
Maybe start ISRIB in end of january when the lab test is finished (cos ISRIB should yield fast results)

If I dont notice anything from ARA-290 by February/March, I might want to venture into Ampligen IV while keeping ARA-290 in
 

bensmith

Senior Member
Messages
1,547
Cool. I think i want to try the isrib for the same reason. I am starting ldn atm but not sure if anybody has gotten big results from it. Helps a smidge for me.
 
Messages
2
No I will actually stay with ARA-290 for 3-6 months.
Maybe start ISRIB in end of january when the lab test is finished (cos ISRIB should yield fast results)

If I dont notice anything from ARA-290 by February/March, I might want to venture into Ampligen IV while keeping ARA-290 in

how did it go?
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
You should join our Discord, we discuss all those treatments there.
https://discord.gg/JtrT9ctT
The link is valid for 7 days.

So far 5 patients including me have started ARA-290.
One saw big improvements on fatigue
One saw good improvements but had to stop.
My improvements are mostly on autonomic dysfunction but not fatigue!
 

frozenborderline

Senior Member
Messages
4,405
You should join our Discord, we discuss all those treatments there.
https://discord.gg/JtrT9ctT
The link is valid for 7 days.

So far 5 patients including me have started ARA-290.
One saw big improvements on fatigue
One saw good improvements but had to stop.
My improvements are mostly on autonomic dysfunction but not fatigue!


Can you repost the invite link or pm it to me? Thanks
 

junkcrap50

Senior Member
Messages
1,330
My improvements are mostly on autonomic dysfunction but not fatigue!
What improvements specifically? How did you judge your automatic dysfunction status? Do you mean HR, breathing, BP, etc?

I know I should check the discord, but I've been away from it so long, I'm avoiding it due to how much reading and catching up, I'll have to do.
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
What improvements specifically? How did you judge your automatic dysfunction status? Do you mean HR, breathing, BP, etc?

I know I should check the discord, but I've been away from it so long, I'm avoiding it due to how much reading and catching up, I'll have to do.
Biggest improvements for me were on Blood circulation in hands and feets (they were blue and cold before, hurting because of bad blood circulation). This almost vanished.
Instead of three woolen socks I now wear one woolen sock per feet.

Second improvement was on sitting and standing upright. Before ARA-290 I was not able to sit upright for longer periods of time (I was able to during a 2-3 month timeframe when NADH had helped me a lot).
Since then I feel like standing/sitting/lying down doesnt make so much of a difference anymore.
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
The administration of ARA290 to pristane-induced SLE and MRL/lpr mice significantly suppressed the level of serum antinuclear autoantibodies (ANAs) and anti-dsDNA autoantibodies, reduced the deposition of IgG and C3, and ameliorated the nephritis symptoms. Moreover, the serum concentrations of inflammatory cytokine IL-6, MCP-1 and TNF-α in SLE mice were reduced by ARA290. Further, ARA290 decreased the number of apoptotic cells in kidney. In vitro experiment revealed that ARA290 inhibited the inflammatory activation of macrophages and promoted the phagocytotic function of macrophages to apoptotic cells. Finally, ARA290 did not induce haematopoiesis during treatment. In conclusion, ARA290 ameliorated SLE, which at least could be partly due to its anti-inflammatory and apoptotic cell clearance promoting effects, without stimulating haematopoiesis, suggesting that ARA290 could be a hopeful candidate for SLE treatment.

https://pubmed.ncbi.nlm.nih.gov/29570934/
 
Messages
14
The administration of ARA290 to pristane-induced SLE and MRL/lpr mice significantly suppressed the level of serum antinuclear autoantibodies (ANAs) and anti-dsDNA autoantibodies, reduced the deposition of IgG and C3, and ameliorated the nephritis symptoms. Moreover, the serum concentrations of inflammatory cytokine IL-6, MCP-1 and TNF-α in SLE mice were reduced by ARA290. Further, ARA290 decreased the number of apoptotic cells in kidney. In vitro experiment revealed that ARA290 inhibited the inflammatory activation of macrophages and promoted the phagocytotic function of macrophages to apoptotic cells. Finally, ARA290 did not induce haematopoiesis during treatment. In conclusion, ARA290 ameliorated SLE, which at least could be partly due to its anti-inflammatory and apoptotic cell clearance promoting effects, without stimulating haematopoiesis, suggesting that ARA290 could be a hopeful candidate for SLE treatment.

https://pubmed.ncbi.nlm.nih.gov/29570934/
hi mitoMAN, I have a pretty rough SFN and autonomic neuropathy and plan to try ARA-290. Can I join Discord?
 
Messages
79
Is there any updates on this?
How to define from which source autonomic symptoms do comes from (such as blood pooling, increased sympathetic activity on standing, heart beating stronger, etc...)? Is it damaged peripheral autonomic nerves, or dysfunctional autonomic centers in the brain? If second, can this drug help somehow? Or it can help only with SFN?
If this drug somehow helping with autonomic symptoms, why there is so little info on the internet, I just don't understand...