Officially diagnosed, now which med?

[smalltowngirl]

I just left the neurologist. He officially diagnosed me with MS, and Transverse Myelitis. He said since there was a lesion on my spine, he’d prefer to treat this more aggressively. He gave me DMT options. He said he has a lot of patients on Copaxone, and said it would be good for me. He also said a more aggressive choice and another suggestion was Gilenya.

He asked me to read up on each of those and let him know Monday which I decided on.

Has as anyone taken either of these meds? Feeling a bit overwhelmed but thankful for a diagnosis. I’d appreciate any advice.

[Carlyle]

everyones different

Hello, I started with copaxone then Betaseron then gilenya now on aubugio.He would switch my med. after my yearly mri trying to find best for me.good luck

[Seasha]

Hi smalltowngirl,

Sorry about your dx, but now the wait is over and you can move on. In case you haven't already seen our Medication Forum, here is the link https://www.msworld.org/forum/forumd...amp-Treatments

There are many sub-forums of each DMT and within each there is much discussion (pro and con) from others.

hope this helps! You might consider something more aggressive than Copaxone.

[smalltowngirl]

Thank you so much! I did not see that part of the message board, so I really appreciate you showing me! Thanks!!

[Boudreaux]

Take your time and get informed about the meds. You can delay until you are comfortable with your decision.

[smalltowngirl]

Thanks, y’all! I think, after reviewing the forums more, I’m leaning toward Gilenya. I feel like if the side effects are too much, I can always stop it. But why not try, right? Fingers crossed!

[LostMyMonkeys]

Sorry to hear about your diagnosis. I went with Gilenya, have been on it since October and tolerate it well. No side effects that I can tell, and last appointment, no macular edema. Good luck with your choice!

[smalltowngirl]

Thank you. Lots changed since that post and now I’m trying to get insurance approval for Ocrevus. Thank you for your well wishes and information!

[Myoak]

There should be no hurry in choosing a DMT because it is a decision which will affect the rest of your life. I have a couple of observations to share since you asked...

First, you apparently have RRMS. That means if you take no DMT at all you will get better when MS remits. But you will have more lesions and more flare-ups and more disability when MS relapses, if you choose no DMT.

Some people opt for a fairly useless (IMO) DMT like Copaxone and they may think it is effective when all that happened was that their MS was following a natural pattern of remitting, regardless if they were on that DMT. I hope that makes sense to you. Bottom line, Copaxone is so poorly effective it probably (IMO) would not even be approved today. It was FDA approved when there was nothing else available to treat MS.

Frankly, I am not a fan of any of the orals, either. Considering the side effects of the orals why wouldn't a patient take a more effective DMT with comparable or even less serious side effect profile than what the orals demonstrate? Yes, the orals are convienient but they are not nearly as effective as Tysabri or Ocrevus. Why not consider a DMT which has the highest mathematical probability of halting MS progression? Especially when the safety profile is as good, or better than the orals?

Tysabri is tremendously effective. It's fatal flaw... PML is virtually non-existent if you are JC virus negative. And, you will be tested for that virus which causes PML before Tysabri is even offered. BUT for those on Tysabri it is critically important to note that in the dose extension study (extending time between doses to 5,6,7,or 8 weeks rather than every 4 weeks) NO ONE HAS EVER GOTTEN PML whether they are JC virus positive or negative!!!! The reason this fact is so important is because neuros are still scaring people off of a tremendously beneficial DMT, possibly the best DMT for MS. Simply said, extending time between doses has mitigated the PML risk of being on Tysabri. Will there ever be a single case of PML appearing in someone on dose extension? Probably, but it will be a very rare occurrence according to the results so far.

Every DMT has risk. The junky (JMHO) garbage ones have risk. Not treating MS in the most effective manner has a ton of risk for disability progression, too. Everything has risk in MS. Things you do and things you don't do. Each person has a risk profile that is unique and they need to be true to themselves. What can you sleep with at night, as far as risk goes? Treatment decisions need not be hasty. If you have RRMS, you are most likely getting better when MS remits, even delaying your DMT decision; not always, but usually. There is no hurry.

I see you are considering Ocrevus. My wife just switched from Tysabri (she was on it for 17 years because she was on Tysabri during trials starting in 2000 and btw, she was JCV positive the entire time and nothing bad happened) to Ocrevus.

She choose to switch because she only has to go for an infusion every 6 months and Ocrevus appears to be as effective as Tysabri.

Every DMT for MS has risk, Ocrevus included. IMO, the side effects with both Tysabri and Ocrevus are substantially less onerous than the side effects with the orals. My wife happily could not point to a single side effect on Tysabri...much unlike some of the possible side effects of the orals... like hair falling out on Aubagio, your GI tract getting torn up by Tecfidera, or white blood cell depletion on Gilyena.

One thing for sure... Tysabri and Ocrevus are both far, far more effective in slowing (often halting) MS progression than the orals. And, that is not opinion, it is scientific fact established by peer-reviewed scientific trials.

Best wishes!!!!!! You are fortunate to have good meds to choose from!

[smalltowngirl]

Myoak, thank you so much for the information. While I'm trying not to be impulsive about this decision, I am looking forward to starting treatment of some kind and getting my life back in order. I agree with a lot of what you pointed out. Thanks for sharing!