i thought this article was informative. It seems to show the benefit of what the younger, newly diagnosed people have been saying. Neurologists are treating people in early stages with the hard core DMTs like Ocrevus instead of waiting for it to get worse before going there. My doc started me on Copaxone 12 years ago, then moved to something stronger when my symptoms got worse 4 years ago. Going to start Mavenclad soon. We will never know the road not taken but we take these things in stride, right? Let me know your thoughts please.
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I spent over 16 years on Copaxone after stopping it I tried 3 other meds before taking mavenclad. I think that was the best decision I made. March will be 2 years since I took my last pill and I am still doing well. I have some good doctors here in Georgia and I am hopeful that I will continue to do well.Oliver is keeping me busy and the fatigue I get is nothing compared to before mavenclad.
I wish you the best keep us informed on how you are doing
thanks Turtlepie it's always good to know i'm not alone and i appreciate hearing your good experience with Mavenclad. I do have some questions about killing off the B cells. Have you had covid since going on M? Other infections or side effects? I'm hoping for the best possible outcome which would be not getting any worse deterioration and maybe stronger. Please share your experience. thanks in advance.
I did get covid and had to wait a couple of weeks before I could finish year 2. I didn't get as sick as some but I never want to get that again it was way worse than the flu. I found that six months after finishing year 1 I had an increase in energy I still have problems that have been with me since I was first diagnosed but nothing new. I had some hair loss but no balding just about twice the amount of the normal hair loss. There was a nasty taste during the first year but not the second. Over all I did really well with mavenclad.
No more DMTs. I decided if I start having any problems that I will just treat my symptoms I don't want to do any infusions and I worry about the side effects of all the other medications. I am 65 now and if I stay like this I will be happy. I am not taking Ampyra
I disagree with the idea that a little brain damage is cool. A mild case may never end in disability, but let the brain owner make the call. This is early disease being discussed, but I'll throw mild burden in the pot too. Now add a big scoop of insurance gatekeepers that require drug fails, and a sprinkle of MDs who refuse to write for certain meds/levels of disease......and you have a nice pot of turd soup being served up to some people with MS for decades to come.
The worst part about Mavenclad so far has been the stupid packaging, but it's only been 3mo. I regret not trying it sooner.
This is the thinking, and has been the way, doctors are treating RA. I was diagnosed with that ... 30-ish years ago(?) and was put on something (I can't remember). He told me the thought process is to start with the "big guns" to see if that would kick it into remission. Worked for me!
To bad they didn't put that thinking in to other diseases at the time instead of waiting!
I too started on Copaxone for my first Five years but then it stopped working. I was next placed on Tecfidera which stabilized me for 6 years and then was placed on the twice a year Ocrevus IV infusion in 2020. I understand how everyone is different and certain medications work differently for everyone, but like you I was and still am willing to try anything if it can help. For me when I started Tecfidera and now being on Ocrevus, I have had no new lesions on my brain or spine, of course my problems are the lesions that were already there before I started Tecfidera. Wishing you all the best and hope this helps some!!
Congratulations on staying on Copaxone for 12 years. I lasted only 3 years on it, took a 10-year break with no DMTs, and have been back on the generic version for nearly 2 years now. We all have to find whatever works best for us--DMTs or no DMTs, and if DMTs, which one. Many people try several before finding one they like or giving up on the DMTs.
It may be pointless for someone my age who has had MS since 1980 to be taking a DMT at all but it's still there for me (Medicare/Medicaid covers it completely), and I'm glad that I'm doing what I can to keep the MS from getting worse too fast. It's going to get worse anyway, as I see it, but I'd like to slow it down if possible. That's all the DMTs are promising--and even then, only in some people. But they're better than nothing, and nothing is all there was at the time when I was diagnosed.
A few years after she was diagnosed they were experimental and she did not want to be in any study. She passed away in 2012. MS for 41 years. I think there were the ABC drugs early on but she was not interested. She had 24 hour care at home so she managed the best she could. I don't think her dr. pressed her to take the medications.
I'm so sorry your mother passed away! When I started my first MS drug it was 2001 and at the time they seemed to be still fairly new. There were only 3 of them to choose from at the time, and I doubt that a doctor would have prescribed them for anyone who had had MS that long already. There were doubts about it in my case too--they've been saying that the MS drugs aren't as effective if you've had MS for a long time. But they think they just might have some effect, and they don't know exactly. So sometimes they prescribe them for anyone with MS.
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Suzy the Figure Skater with MS from R.I.
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