Posted 10/8/2018 6:41 AM (GMT -6)
Regarding the recent Nanoneedle results from the drug Copaxone.
This was posted to the Facebook group "MECFS for the Slightly Irreverent" by Rachel Riggs, who is a patient, and the study coordinator / community liaison for Dr Robert Naviaux's lab.
"** Something really important happened this week at the Symposium, and I'd like to share it with all of you!! ♀️
Last March, after writing quite a few other scientists (including Younger and Zaher Nahle of Solve ME/CFS) and Teva, the maker of Copaxone about my experience with the MS drug Copaxone, I talked to Dr. Naviuax about it, and he connected me with Ron Davis' team. I sent them this email:
On Mar 13, 2018, at 11:18 AM, rriggs wrote:
I was asked to be in touch with you to arrange a meeting and a blood draw. I was able to obtain two syringes of Copaxone for you, and I will be in Palo Alto next week!
I'm not sure how much you were told, so here are the details of my Copaxone experience:
I was initially misdiagnosed in January 2010 as having MS and was prescribed a daily injectable called Copaxone. I didn't give it much consideration when my energy levels improved, because it coincided with the sale of my business and I attributed this change to "retirement".
By improvement I mean I was spending two hours at the gym each day doing BodyPump and Zumba. It didn't touch symptoms such as heat intolerance, but it returned my energy levels to about 75+%.
Two years later, I had a post-injection reaction which I was told
occurs in about 5% of people who take Copaxone. Always in anticipation of that scary reaction, I eventually stopped taking it.
In late 2013, (still thinking I had MS) my symptoms became much more acute so I decided it would be prudent to resume the Copaxone in an effort to slow what seemed like rapidly progressing MS symptoms.
After approximately three weeks, I noted a lifestyle change. I was leaving the house and doing things with a new ease. My husband and I observed a pattern, in that I was now taking a new injection protocol which required only 3x weekly injections. We wanted to make sure we were not imagining this symptom improvement because in MS, this drug is not effective in treating symptoms -- its use is in slowing disease progression.
A few more weeks went by and we continued to marvel at its effects, until one day I had a post injection reaction which involved my throat tightening and large welts on my torso. My neurologist asked me to stop taking it and my allergist
confirmed via skin test that I was indeed allergic to the active ingredients. My symptoms came flooding back.
Fast forward to a diagnosis of CFS at The Mayo Clinic in late 2015, and a ton of research online to find a connection that made my experience with Copaxone make sense to me! I found this paper:
This convinced me that it would be a really effective, relatively
innocuous treatment for the subset of patients who also respond to Rituxan, making Copaxone a Rituxan "light" in effect. At the very least, it could be used as a means of identifying a certain subset of patients and provide additional insight, to know that simply modifying B-cells in this way has such a profound effect on symptoms (I know very little about Rituxan, I say this simply because my understanding is that it too modifies B-cells).
Note: "This study describes what is, to our knowledge, the previously unknown effect of glatiramer acetate therapy on B cells in patients with relapsing-remitting multiple sclerosis (MS)."
On Saturday, when I arrived to the Symposium, Dr. Naviaux pulled me aside immediately to tell me that when tested in the Nanoneedle Copaxone did indeed change ME/CFS blood to healthier blood. The only two drugs that have ever shown that result are Suramin, and Copaxone. I spoke to Ron Davis who also confirmed that. Later in the day, I ran into Rahim, the developer of the nanoneedle, who further confirmed that was the case."
If this post deserves its own thread, admin is welcome to move it
---The Phoenix Rising cfs web site has more onthis because Ms Riggs answered questions.
It is in the thread called
Discuss the article on the Forums.
Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread