Wondering if anyone else isn't sold on the concept of taking a sledgehammer to the immune system to treat RRMS.
I am looking forward to these meds finishing clinical trials:
* Vidofludimus calcium [It's both anti-EBV and neuroprotective effect]
(Link: multiplesclerosisnewstoday....
* ATA188 [It's designed to destroy EBV-infected B-cells]
Which one is a sledgehammer? 🤔
I hope the trials bring new options!
Meds that cause B-cell and/or T-cell depletion: Ocrevus, Tysabri, Mavenclad, and others.
Older meds, like Copaxone, are classified as immunomodulators, so they don't wipe out the immune system, but they help with inflammation. However, if MRIs still show disease progression while on these types of meds, the recommendation is to move to other meds. I get that. I am just not sold on the options available.
I wasn't really sold on anything either, because many people are out doing cartwheels on meds that hurt me 😵💫 It's the side effects that give me pause. I've never had an issue with my immune system being altered on a top tier choice. Copaxone was awful to me too. We are all different and unfortunately never know how something is going to work.
These drugs look very promising. I have had horrible side effects to allth theMS drugs. My body can't handle them. These look fantastic because they slow progression without all of the bad side effects. Thank you so much for sharing this with us.
So sorry to hear about this. I, too, am someone who experiences a lot of side effects from meds ... not just MS meds. It often feels quite lonely because even doctors tend to dismiss the lived experience that I have. It stops being a collaboration because I feel shut down.
You're very smart. I’ve been on 3 sledgehammer like drugs. I spent my entire Christmas holiday in the hospital with sepsis. VERY scary. My immune system is in the toilet caused by my MS drugs. I have 2 neurologist with 2 very differing opinions on where to go from here.
So sorry to hear that you went through that! I hope your recovery is going well.
I don't like the idea of walking around with absolutely no immune system. I don't see how being more vulnerable to various viruses is going to improve my quality of life.
I share your frustration that high efficacy medications do put us at risk infections, especially in a world where even some of our loved ones do not grasp the need to be cautious about avoiding illness. It does feel incredibly lonely. I do feel like some neurologists and NP's minimize and gaslight us about those risks.As much as I look forward to newer drugs that hopefully do more for us with fewer side effects, I have to say that we are a lot better off than we were when I was diagnosed twenty years ago. We had a choice of four safe injectables with some pretty unpleasant side effects, and they weren't super effective. These newer drugs are powerful and the side effects are frightening, but as a neurologist on YouTube said recently "Time is brain". I'm grateful to have the better drugs even if they're scary, because MS scares me more.
Yes, yes, I completely understand. And I am glad that the drugs are available for those who want to take them. I was just hoping for a more collaborative relationship with my neurologist because I'm one of the people who currently sees the new meds as NOT worth the risk. We are not data points. We are individuals with different medical histories, risk tolerances, and criteria for what we consider quality of life.
You're definitely not alone; many people with MS don't feel that taking any DMT is for them.
Thank you for this. It helps so much to feel heard and understood.
Hey, all this is hard enough without supporting each other!
I was on Lemtrada DMT which I understand destroys your immune system and when it comes back it forgets that it had MS. So no more new lesions (but the old lesions are still there).
Yes, that's my understanding, too, except that some people's immune systems "stay offline" for longer than expected and the "cure" becomes worse than the original issue. It doesn't seem possible to predict whose immune system will respond well and whose won't.
There must be statistics on it somewhere. Maybe the drug manufacturer(s) would be able to provide this information.
As part of my research, I reviewed the prescribing guides and conferred with my neurologist, a hematologist, and an infectious disease specialist. I am not someone who is swayed by the argument that "the serious side effects are rare," because I have, unfortunately, be in that rare group numerous times.
Good job doing the research.
It's always worth looking for the most recent outcome reports on trials - both of the articles on those links are over 12 months old so the information is out of date.. Also, vidofludimus calcium is only up to Phase 2 trials, so even though it currently looks potentially promising, there's a long way to go yet.
Unfortunately ATA188 has not done well, with the drug not even "performing" as well as placebo in the most recent trial.
"ATA188, an experimental cell therapy targeting the Epstein-Barr virus, failed to outperform a placebo at easing disability levels in people with nonactive progressive forms of multiple sclerosis (MS), according to data from the Phase 2 portion of the EMBOLD clinical trial.
The medication also showed no signs of efficacy on certain disease biomarkers.
“We are surprised and deeply disappointed with the results of EMBOLD,” Pascal Touchon, president and CEO of the therapy’s developer, Atara Biotherapeutics, said in a press release."
multiplesclerosisnewstoday....
And "The study did not meet the primary endpoint of confirmed disability improvement (CDI) by expanded disability status scale (EDSS) at 12 months compared to placebo. In addition, fluid and imaging biomarkers did not provide further supportive evidence."
businesswire.com/news/home/...
I've pretty much given up on there being any really effective drugs for PPMS being available before I shuttle of my mortal coil - after quite a few years now of seeing the click-bait "wonder drug breakthrough" headlines I now just go "Sigh.... I'll believe it when my Dr can actually write a prescription for it".
Thank you for sharing this updated info. So helpful!
I am not sold on the sledgehammer approach. I think it focuses on stopping/slowing MS progression at the detriment of every other system in our bodies. It just seems there has to be an approach that doesn't endanger other parts of our bodies so badly.
Yes! I can't get on board with all the destruction. I'd love a more holistic approach.
I hear you about a more holistic approach and being heard by your doctor. After 25 years on 7 different DMTs, I made the decision to stop one year ago. The last therapy I tried was a b-cell depleter, and my body reacted horribly to it. After months of research and a long discussion with my neurologist, I decided the right choice for me was to discontinue treatment. I certainly understand that each of us has to make that decision for ourselves and everyone reacts very differently to different drug therapies. I hope you can find the right path forward for you. 🤗
Thank you! I wish the same for you.
I thought you might find this article about integrative medicine and MS to be interesting:
Very interesting. Thank you!
Is it Just Me????
Anyone have high blood pressure? It's the one thing I don't have thank goodness!
Not everybody gets it and that is Okay
is it just me...
