Could Copaxone Help Us?

[keepontruckin]

I wrote Teva to inquire if they had thoughts about making the drug available to patients with cfs. He asked if i was Canadian and he replied:
We do supply the pharmacies across Canada through Wholesalers

We have Copaxone 20mg and 40 mg

You have to check with your doctor and pharmacist to get this medication


Thank you,
Cordialement | Best regards,
------------------
I don't know if there is a possibility to access it. Since copaxone would not be on the list of eligible drugs for cfs according to Health Canada then i suppose you would have to find a doctor that would prescribe if for "off label" use. I suppose that is unlikely.

 

[GodGenghis]

I imagine a doctor would have to have a good rationale for using Copaxone off label like this. And saying that there are a couple people on the internet who say it helped them probably isn't enough. But I dont really know.

 

[babeng]

And saying that there are a couple people on the internet who say it helped them probably isn't enough

That's why we should welcome more news from OMF/Ron Davis regarding copaxone. How many patients cells have they tested it on, how long did it take before the effect happened in the lab, do they plan to test it in patients and when etc..

 

[dreampop]

I imagine a doctor would have to have a good rationale for using Copaxone off label like this. And saying that there are a couple people on the internet who say it helped them probably isn't enough. But I dont really know.

I suspect it would actually be harder to get than Rituximab. Rituximab is used off-label all the time, and is used in a wide variety of conditions. Many doctors are comfortable with it. There was both a phase I & II sutdy on it for ME/CFS, so there was at least some literary references to it's use in the condition (and often immune findings in the individual as well). I couldn't even imagine what the argument would be for trying copaxone, since it's not clear why it works in MS and why it would work in ME/CFS. And most doctors probably aren't comfortable with it off-label since it's not used for anything else.

 

[keepontruckin]

I thought Copaxone was generally well tolerated whereas Rituximab was not. I am no expert but the toxicity and how well it is tolerated woudl be another thing to consider.

 

[Ema]

I suspect it would actually be harder to get than Rituximab. Rituximab is used off-label all the time, and is used in a wide variety of conditions. Many doctors are comfortable with it. There was both a phase I & II sutdy on it for ME/CFS, so there was at least some literary references to it's use in the condition (and often immune findings in the individual as well). I couldn't even imagine what the argument would be for trying copaxone, since it's not clear why it works in MS and why it would work in ME/CFS. And most doctors probably aren't comfortable with it off-label since it's not used for anything else.

I am not sure that this is true.

If you can have a doctor willing to prescribe off label, and have insurance that covers it without asking for a PA (they are rare but do exist!), it should work pretty easily.

Your typical GP on the corner doc in a box is not likely to be helpful, but specialists and/or integrative practitioners might very well be open to the idea. The problem is as likely to be insurance coverage as the doctor.

 

[dreampop]

I am not sure that this is true.

If you can have a doctor willing to prescribe off label, and have insurance that covers it without asking for a PA (they are rare but do exist!), it should work pretty easily.

Your typical GP on the corner doc in a box is not likely to be helpful, but specialists and/or integrative practitioners might very well be open to the idea. The problem is as likely to be insurance coverage as the doctor.

Perhaps, I had no luck broaching the subject, but maybe others will. The good thing is you only need a month of it to see if it works, so it is less than Rituximab, although still absurdly expensive.

 

[Ema]

So the glatiramer arrived over the weekend...but they didn't include the starter kit with the autoinjector. Grrr! CVS specialty is the worst .

 

[Elizabeth3333]

I'd be really curious to hear if people experiment with this off label and how it goes

 

[jaybee00]

@Ema

Did you get your insurance to pay for this? I gather you had an understanding physician?

Good Luck---let us know how it goes....

Thanks

 

[Ema]

@Ema

Did you get your insurance to pay for this? I gather you had an understanding physician?

Good Luck---let us know how it goes....

Thanks

I did, and do! Will do.

 

[Ema]

First shot today, no problems to report. I'll be cured tomorrow, here's hoping!

It sounds like glatiramer may also be inhibit microglial cell activation as well. That would be interesting too. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478150/

 

[dreampop]

I'll be cured tomorrow

Good luck!

 

[Elizabeth3333]

Excited to hear updates on this!

 

[Ema]

I will post any future updates to my experience with glatiramer on this thread at Health Rising, for anyone who is interested.

 

[dreampop]

Interestingly, the study you posted showed

A restoration of interleukin 10 production by peripheral B cells was observed in patients undergoing glatiramer acetate therapy as well as a significant reduction of interleukin 6 production in a subset of patients who received therapy for less than 32 months.

There was thread posted from a Japanese person whose friend w/ ME/CFS took Actemra and found moderate improvement (still fatigued but could work out without PEM). Unfortunately, OP never returned to PR after a couple of days, so it was unclear if their friend maintained those results (or found another diagnosis). I say this knowing Il-6 is fairly normal in ME/CFS so who knows what was going on.

 

[nandixon]

Interestingly, the study you posted showed



There was thread posted from a Japanese person whose friend w/ ME/CFS took Actemra and found moderate improvement (still fatigued but could work out without PEM). Unfortunately, OP never returned to PR after a couple of days, so it was unclear if their friend maintained those results (or found another diagnosis). I say this knowing Il-6 is fairly normal in ME/CFS so who knows what was going on.

I made a post a couple of days ago related to an interesting possibility regarding the use of Actemra (tocilizumab) in ME/CFS:

https://forums.phoenixrising.me/ind...ic-trap-for-me-cfs.58606/page-18#post-1012430

One of the references I cite, a very well-funded study in juvenile type 1 diabetes, found that IL-6 cytokine levels have generally been found to be normal in that disease as well, yet the IL-6 axis is in fact most definitely dysregulated in that disease - due at least partly to overexpression of the IL-6 receptor, if I remember correctly - and tocilizumab is a treatment for a subset of those patients.

After reading that study I realized that many of the cytokine studies in ME/CFS may have been for naught, because not only might various cytokine levels appear normal while their axes are actually dysregulated but that cytokine levels in the local microenvironment of the cell may be higher or lower than what serum/plasma levels might show as well.

 

[dreampop]

@Rachel Riggs Just curious if you tried any other immune treatments and had any success? (e.g. ivig, ritux, steriods).

 

[nandixon]

Hi @Ema, I noticed a fair number of posts on one or more multiple sclerosis forums about people having injection site reactions to Copaxone (glatiramer acetate). I thought at first it was just a case of the people who had problems being more vocal, because the manufacturer apparently claims that this only happens in 2% or less of patients (depending on the formulation).

But then I found this 2014 article:
Copaxone lipoatrophy far more common than reported

I believe that @Rachel Riggs had to stop Copaxone because of injection site problems(?) but I'm not sure if this was due to the specific lipoatrophy problem the article mentions. (The lipoatrophy itself may be due to underlying autoimmune disease.)

 

[Martin aka paused||M.E.]

@Ema no improvement?