GA is still used in women who are planning to start or extend their families, as a bridging agent, to derisk chronic immunosuppression and as a legacy DMT in super-responders.
Greetings Professor G, I have learned more from your selfie from much of anything I’ve researched on MS. This doesn’t pertain specifically to Copaxone, but I’m quite depressed about living the rest of my life with this illness. I’m in the States, diagnosed in 1995 at age 42. Began with migraine, leg weakness, spasm, progressed to bowel and bladder. Only option was Betaseron on lottery. Color and double vision issues in 1997 had me on Avonex for 20 years. I was considered rr, but I did not have remissions. I had slow progression. Had trigeminal neuralgia for 5 years, had surgery for it in 2003 and subsequently suffered left side sensorineural hearing loss with extreme lack of balance (+Romberg eyes open). Deafness put down to MS. I have intermittent numbness, tingling, catheterize and use a stick and walker, depending. I was told by a prestigious institute here a few years ago that I have “plateaued”, have no active lesions and to do nothing. Tremor is the most confounding. One doctor put me on IVIG, but the risks outweighed the benefits. I’m chronically exhausted, I swim when I can, but life is not enjoyable. I’ve been interested in your concept of smouldering MS, but I feel that no one here takes this seriously at my age. I have tried Copaxone (serious skin reaction), Aubaugio (gut issues), but nothing else. I do believe that I’m walking because treatment was started early. But I’m at a loss now. Thank you for your selfie!
Hello Prof G and thank you for the article. Are the GA super-responders actually responding to something specific about GA per se, or do they share some characteristic(s) which means they would do as well on any DMT (or even none)? Especially bearing in mind that some of the legacy users would have started on their GA before more efficacious DMTs were available.
I am on GA following dx in 2018 and have remained stable to date (no relapses/new lesions/disability change and no obvious brain volume change). My guess is that I am perhaps a super-responder (but I won't get complacent about that as I am aware that with the unpredictability of MS at an individual level, things can change). I know that the overall DMT efficacy stats are from cohort-level observation rather than tailored to the individual, so when family and friends ask whether it's the DMT that is keeping me stable I've always said that I will never truly know, but I adhere to it zealously along with a brain-health-friendly lifestyle and so far, so good. It is, I guess, natural that I err on the positive side and take the optimistic view that I might be a super-responder, but who knows whether that is really the case. Do some super-responders suddenly stop responding later down the line?
This post is a year old but I think my comment really belongs here.
I'm a 45 year old female, first brain MRI now 2 years ago. It looks like I have MS, though I have been struggling to get an appointment for diagnosis. At my most recent attempt I saw a neurologist who had not looked at my scans. I told him my history (indefinite brain and spinal cord scans, lumbar puncture with positive oligocolonal bands and weak blood brain barrier) and symptoms (paresthesia).
He said that if my scans turn out to be stable, he would recommend either no treatment ("monitoring") or copaxone. I was really surprised, having read this blog. My impression was that copaxone was largely superseded. I made it clear I was willing to hit the MS hard and fast, so why recommend copaxone? Plus, I travel a lot, it would be a real nuisance to have to drag around needles everywhere. I'd do it if I had to for my health, but is this really the only DMT?
He did say that if my scans showed changes, he might reconsider. He seems to think that the fact I have ulcerative proctitis (albeit stable, well-controlled) rules me out of most DMTs.
And his general approach was that since I am in my 40s, I am old, my MS is unlikely to progress much, because my immune system is weaker.
So.... is copaxone commonly used if you are "stable" or "in your 40s" or have some kind of UC?
Greetings Professor G, I have learned more from your selfie from much of anything I’ve researched on MS. This doesn’t pertain specifically to Copaxone, but I’m quite depressed about living the rest of my life with this illness. I’m in the States, diagnosed in 1995 at age 42. Began with migraine, leg weakness, spasm, progressed to bowel and bladder. Only option was Betaseron on lottery. Color and double vision issues in 1997 had me on Avonex for 20 years. I was considered rr, but I did not have remissions. I had slow progression. Had trigeminal neuralgia for 5 years, had surgery for it in 2003 and subsequently suffered left side sensorineural hearing loss with extreme lack of balance (+Romberg eyes open). Deafness put down to MS. I have intermittent numbness, tingling, catheterize and use a stick and walker, depending. I was told by a prestigious institute here a few years ago that I have “plateaued”, have no active lesions and to do nothing. Tremor is the most confounding. One doctor put me on IVIG, but the risks outweighed the benefits. I’m chronically exhausted, I swim when I can, but life is not enjoyable. I’ve been interested in your concept of smouldering MS, but I feel that no one here takes this seriously at my age. I have tried Copaxone (serious skin reaction), Aubaugio (gut issues), but nothing else. I do believe that I’m walking because treatment was started early. But I’m at a loss now. Thank you for your selfie!
Hello Prof G and thank you for the article. Are the GA super-responders actually responding to something specific about GA per se, or do they share some characteristic(s) which means they would do as well on any DMT (or even none)? Especially bearing in mind that some of the legacy users would have started on their GA before more efficacious DMTs were available.
I am on GA following dx in 2018 and have remained stable to date (no relapses/new lesions/disability change and no obvious brain volume change). My guess is that I am perhaps a super-responder (but I won't get complacent about that as I am aware that with the unpredictability of MS at an individual level, things can change). I know that the overall DMT efficacy stats are from cohort-level observation rather than tailored to the individual, so when family and friends ask whether it's the DMT that is keeping me stable I've always said that I will never truly know, but I adhere to it zealously along with a brain-health-friendly lifestyle and so far, so good. It is, I guess, natural that I err on the positive side and take the optimistic view that I might be a super-responder, but who knows whether that is really the case. Do some super-responders suddenly stop responding later down the line?
This post is a year old but I think my comment really belongs here.
I'm a 45 year old female, first brain MRI now 2 years ago. It looks like I have MS, though I have been struggling to get an appointment for diagnosis. At my most recent attempt I saw a neurologist who had not looked at my scans. I told him my history (indefinite brain and spinal cord scans, lumbar puncture with positive oligocolonal bands and weak blood brain barrier) and symptoms (paresthesia).
He said that if my scans turn out to be stable, he would recommend either no treatment ("monitoring") or copaxone. I was really surprised, having read this blog. My impression was that copaxone was largely superseded. I made it clear I was willing to hit the MS hard and fast, so why recommend copaxone? Plus, I travel a lot, it would be a real nuisance to have to drag around needles everywhere. I'd do it if I had to for my health, but is this really the only DMT?
He did say that if my scans showed changes, he might reconsider. He seems to think that the fact I have ulcerative proctitis (albeit stable, well-controlled) rules me out of most DMTs.
And his general approach was that since I am in my 40s, I am old, my MS is unlikely to progress much, because my immune system is weaker.
So.... is copaxone commonly used if you are "stable" or "in your 40s" or have some kind of UC?