Could Copaxone Help Us?

[jaybee00]

@MartinDH

She quit it apparently. https://www.healthrising.org/forums/threads/starting-copaxone-glatiramer.6075/

"I stopped the trial. After three weeks, I was feeling noticeably more fatigued. Since my baseline is pretty good right now, I have less tolerance for any decline in function at all. It was nothing terrible, just feeling more sluggish than normal.

The shots stung more than I expected as well, and the potential for disfiguring injection site reactions also was a negative for me. If it had worked well, that possibility would be worth it, but not otherwise.

I wouldn't rule out trying it again in the future, if more evidence showed it to be beneficial, but at this early stage, it's a no go for me. "

My feeling is that 3 weeks might not have been a long enough time trial.

@nandixon I believe that Rachel Riggs stopped using due to an allergic reaction to Copaxone, not necessarily an injection site reaction.

I'll take lipoatrophy happily in exchange for a cure....

 

[dreampop]

Sorry to hear that @Ema but at least it sounds like other things are moving the needle for you.

 

[roller]

Suramin is potentially a cure, with periodic touch-ups needed, while Copaxone would require daily injections indefinitely. With the Suramin trials happening next summer, I am hopeful. But there is information to be gleaned from this copaxone connection, I just don't know who's willing to look deeper. Naviaux has said it won't be him - he's in it for a cure!

did i read somewhere on here, that this suramin trial was canceled or will it take place in summer 2019?

someone said, that bayer wouldnt deliver the suramin, thats why... ?

will there be a copaxone trial in summer 2019?

if not, any other trial in summer 2019?

I'm sorry, I do not remember all the speicifics but I was told

I'm sorry, I don't remember all the specifics, but Naviaux told me himself that this was not done correctly.

.. i would imagine, that suramin is not too much for some, but imo would be a massive improvement for the biggest chunk of patients.
possibly, more meds would need to support it.

 

[raghav]

Any update in this thread ?

 

[Rachel Riggs]

Any update in this thread ?

Naviaux is visiting the NEW Suramin manufacturing plant next week. It's just a waiting game now, likely early-mid 2020 for the Suramin trials to take place. Once things happen they will move quickly, free of the previous barriers, and if all goes well could have FDA approval in 2 years. Per Naviaux, last week.

Also - expect an exciting but unrelated announcement from him soon.

 

[raghav]

Thanks. I thought the suramin trials will happen in 2019.

 

[Rachel Riggs]

Thanks. I thought the suramin trials will happen in 2019.

We had hoped...

 

[knackers323]

Naviaux is visiting the NEW Suramin manufacturing plant next week. It's just a waiting game now, likely early-mid 2020 for the Suramin trials to take place. Once things happen they will move quickly, free of the previous barriers, and if all goes well could have FDA approval in 2 years. Per Naviaux, last week.

Also - expect an exciting but unrelated announcement from him soon.

What will take a year or more to be able to start the trials?

 

[Rachel Riggs]

He was unable to get the drug from Bayer so began working with an investment group and a new manufacturer to produce their own Suramin. Soon, it will be readily available!

 

[roller]

it would be non-IV (oral tablet?) and affordable, hopefully ?

 

[wigglethemouse]

Also - expect an exciting but unrelated announcement from him soon.

April 4th 10am, NIH conference maybe? Or sooner? I'm intrigued!

 

[Rachel Riggs]

No, this is not specific to ME/CFS, but related - nothing to do with NIH.

 

[raghav]

Autism clinical trials ?

 

[Jessie 107]

We had hoped...

Surely the trials will take year's?

 

[edawg81]

Surely the trials will take year's?

Based in his previous trials he expects the drug to work quicky in a few doses over a few weeks, unlike the rituxan trials. I would ‘guess’ he could start and end a phase 2 trial in 90 days. Correct me if im wrong, but logistics and the administrative burden seem to be the most costly with respect to time and money.

 

[roller]

naviaux is the only one that came up with some solutions, so far.

after finding a fix with the nano needle it should be possible to find a substitute for this med?
it doesnt have to be as good, just more affordable and sourcable.

 

[Rachel Riggs]

naviaux is the only one that came up with some solutions, so far.

after finding a fix with the nano needle it should be possible to find a substitute for this med?
it doesnt have to be as good, just more affordable and sourcable.

Well, you'd be talking about a brand new drug then which does not have FDA approval and that would take many years to develop...

 

[Rufous McKinney]

The problem is as likely to be insurance coverage

Mine denies coverage of useful Prescriptions, always.

I pay myself and there is: a simple math equation called- got no more money to give them.

Paid too much already.

 

[MonkeyMan]

He was unable to get the drug from Bayer so began working with an investment group and a new manufacturer to produce their own Suramin. Soon, it will be readily available!

@Rachel Riggs, that is fantastic news. Dr Naviaux has quickly become one of my heroes in the fight against ME/CFS.

To confirm, does he believe that Suramin may actually be a CURE?

 

[jaybee00]

https://parkinsonsnewstoday.com/2019/06/25/copaxone-benefits-parkinsons-disease-study/

MS Medicine Copaxone May Have Benefits in Parkinson’s Disease, Mouse Study Finds

Treatment with Copaxone after the onset of the disease reversed gait (walking) and grip impairments in MPTP-treated mice.
Investigators believe this was due to the remarkable recovery in the levels of tyrosine hydroxylase (TH), one of the enzymes that is responsible for the production of dopamine in the striatum (a region of the brain involved in motor coordination) following treatment with Copaxone.
In addition, researchers found the number of TH-positive neurons in the substantia nigra increased slightly, albeit non-significantly, in animals treated with Copaxone, compared to those treated with a vehicle solution (control) after MPTP induction.
This was also associated with an increase in the levels of brain-derived neurotrophic factor (BDNF) — a protein whose main function is to protect dopaminergic neurons — and a decrease in the levels of IBA1, a marker of glial cells’ over-activation caused by brain inflammation. Glial cells, also known as microglia, are nerve cells that support and protect neurons.​