Could Copaxone Help Us?

[Daffodil]

Hi, all. I was reading about the plasmacytoid dendritic cells and how they can disregulate the immune system after a triggering event such as viral infection (as you know, these cells were implicated in CFS in the DeMeirleir/Lombardi paper).

In this paper, it mentions that glatiramer acetate (copaxone) can help regulate plasmacytoid dendritic cells so I am wondering if this might help us.

http://brain.oxfordjournals.org/content/129/5/1293.full.pdf

I also found a forum where a woman says her diagnosis was MS, she took Copaxone and improved. Later on, her diagnosis was changed to CFS.

http://www.healingwell.com/community/default.aspx?f=15&m=2080092

Copaxone patent just expired....

 

[Ema]

Copaxone seems to be a Th2 shifter. Many think that we are already stuck in Th2 mode so I'm not sure if this would help or not.

It doesn't seem to have a ton of terrible side effects though so if the cost were reasonable, it might be worth a try.

I'm certainly interested to hear about others experiences with it too.

 

[Daffodil]

Copaxone seems to be a Th2 shifter. Many think that we are already stuck in Th2 mode so I'm not sure if this would help or not.

It doesn't seem to have a ton of terrible side effects though so if the cost were reasonable, it might be worth a try.

I'm certainly interested to hear about others experiences with it too.

You are right.

Anyway, some toll like receptor modulator could help us eventually...judging by copaxone's success, this approach could work very well in our autoimmune disease:

http://pharmrev.aspetjournals.org/content/61/2/177.long

 

[jaybee00]

Bumping this thread in light of new news.

@Rachel Riggs

1) Did copaxone help with cognitive issues (brain fog) as well?
2) Did Teva express any interest in looking into Copaxone for the treatment of ME/CFS (e.g. conducting clinical trials)? I know that Copaxone is off-patent now, but if they made a small modification, they could have a new drug with a new indication.

Thank you!

 

[Rachel Riggs]

Bumping this thread in light of new news.

@Rachel Riggs

1) Did copaxone help with cognitive issues (brain fog) as well?
2) Did Teva express any interest in looking into Copaxone for the treatment of ME/CFS (e.g. conducting clinical trials)? I know that Copaxone is off-patent now, but if they made a small modification, they could have a new drug with a new indication.

Thank you!

1) I did not have cognitive issues in my first years of CFS so I am not sure now that my brain is complete mush, if it would help in that way
2) I contacted Teva but I never heard back, I am sure they just assumed I'm a wackadoodle. Yes, you are correct, there are many reasons why they should explore this opportunity!!

 

[dreampop]

Obviously, it would be very exciting if this worked. It would seem to probably work in a different way than Suramin. I would hesitate to get excited about a drug effecting the impedance of cells, since we don't know where the metabolic problems fit in the disease overall, but we have at least 1 report of it helping significantly with symptoms.

If the impedance issues are caused by something in the blood, than it would seem like it binds to that something, competes at the receptor, blocks the receptor or stops any intracellular process that occurs after binding. Are these reasonable scenarios?

 

[Rachel Riggs]

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!

 

[jaybee00]

3 people have tried suramin already and it didn't work at all.....

 

[Rachel Riggs]

3 people have tried suramin already and it didn't work at all.....

My understanding is that they did not try the right drug, dose etc.

 

[jaybee00]

No. In my understanding, they had the right drug, dosage and administered correctly.

 

[Rachel Riggs]

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

No. In my understanding, they had the right drug, dosage and administered correctly.

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

 

[JES]

At least one person did administer the right dosage in this thread, which apparently Naviaux misunderstood.

But either way, I don't expect there to be an ME/CFS treatment that works for 100% of patients, or even 80%. So those one person experiments don't tell us much.

 

[frozenborderline]

n=1 doesn't mean much necessarily but while I respect Naviaux's work a lot, I'm not sure why he thinks suramin should work based on his own data and theories. Suramin is a purinergic receptor antagonist, whereas purines like adenosine are decreased in ME/CFS. According to the theory of the Cell Danger Response, autism would be like an acute CDR and CFS the opposite of the CDR, so I don't know why suramin should work in both cases.

 

[bthompsonjr1993]

@Rachel Riggs can I ask, what was your daily dosage of Copaxone, and how long did it take before you saw improvement? Did you do the injections yourself?

 

[Rachel Riggs]

@Rachel Riggs can I ask, what was your daily dosage of Copaxone, and how long did it take before you saw improvement? Did you do the injections yourself?

I did the standard daily 20mg subcutaneous injection with an autoject which makes it a breeze. It took 3-6 weeks to realize my stamina had improved. Copaxone is done as a self administered injection.

 

[babeng]

With the convenience and relatively cheap price for copaxone compared to rituximab, which many patients tried off label, you would think quite a few patients would try copaxone for a couple of months and see..

 

[Rachel Riggs]

With the convenience and relatively cheap price for copaxone compared to rituximab, which many patients tried off label, you would think quite a few patients would try copaxone for a couple of months and see..

I think that would be AMAZING but I'm not sure how they would obtain a prescription for an MS drug...

 

[babeng]

I think that would be AMAZING but I'm not sure how they would obtain a prescription for an MS drug...

If patients are/were able to get suramin/rituximab off label, I would assume there is a way to get this as well...
When you pay for it yourself you "just" need a willing doctor...

Do you know how many patients cells they tested copaxone on in the lab? Cause it would be more significant if it made CFS patients cells better on several patients and not just one. Especially with Janet's comment that they have identified many potential traps. Would be interesting to know if the drug worked on many patients cells, and thereby presumably on the effects of many possible traps..

 

[Rachel Riggs]

I'm sorry, I don't have any more details on that, but I bet if more people pressed them to have a conversation about copaxone, they would tell us more!

 

[babeng]

I'm sorry, I don't have any more details on that, but I bet if more people pressed them to have a conversation about copaxone, they would tell us more!

I get why they aren't though. If they for instance announced that the drug made cells better for all 10,15 or 20 patients tested, more people would probably go and try the drug off label, Myself included. The way it is now it's very uncertain. So I'm sure all of us would welcome more information. Thanks for sharing your story!