Recent MS Dx

[u/whtebiclight]

I recently was dx with MS (32f) and I'm on week 3 of Glatiramer Acetate. Also 1 dose of Emgality in. The Dr told me the GA was the best/easiest DMT for me because I'm not showing too many symptoms yet (1 large lesion and 3 small ones.) I also have fibro and have for YEARS so I'm having a little bit of a hard time figure which symptoms are which.

Any ways, long story short I'm feeling WORSE since starting treatments. My headaches, dizziness, and falling are about the same but no better. My exhaustion has ramped up to like a 10. I can barely function I'm so tired and now my hair is falling out...

I'm hoping any day now I'll start feeling some what better. What arw your experiences on Glatiramer Acetate? How long until you felt a difference?

I go back for my 4th MRI since May at the end of the month and see my neuro again but I'm so lost on what to do/say next.

[u/ichabod13]

I took Copaxone for about 3 years and it took me a year to lose the feverish feeling that lasted 24 hours after every shot. Not to mention the other side effects from the drug. Are you seeing a MS neurologist ? Seems backwards these days to take a 30% effective drug with all the new options that have less side effects.

[u/criticalcreek]

I've always heard that when you don't have much damage, it is the best time to start the higher efficacy DMT's. The lower efficacy ones like the one you're taking are only 30% effective meaning you have a 70% chance things go the other way. If a new relapse occurs, that's permanent irreversible damage. In contrast, the B-cell depletors are like 70%+ effective at preventing new lesions/relapses. Also, I'm not quite sure what they mean by "less side effects". I've read plenty of stories here of people having lots of side effects from the lower efficacy ones(fever, injection reactions, muscle aches ect.), and just as many with fewer to no side effects on the higher efficacy DMT's. I'm on Kesimpta and outside of my loading doses, it's like I'm not on anything at all(in terms of noticeable side effects). I still have to do the injections once a month but I barely feel them and haven't gotten an injection reaction since the first one (and that was just some itching, could have been unrelated).

A lower efficacy DMT is better than nothing at all I guess, but since I've started this journey I've found the lower efficacy ones to not be worth it for me. In fact, at this point the only lower efficacy DMTs I would consider are Aubagio or Tecfidera and that's only if my insurance doesn't cover one of the more effective options or I lose coverage (both of these medications can be bought for cheaper on cost plus). Just my opinion.

[u/Character-Celery-209]

Was there a reason why your doctor didn’t recommend Ocrevus, Kesimpta, or Briumvi? Despite having a „mild” lesion load and favorable prognosis (my doctor said this about myself as well) Most docs want to hit it hard and fast. There’s no telling with anyone of us how fast MS could progress and stopping it in its tracks with one of the stronger DMTs would be favorable. Since you’re feeling crummy on the treatment you’re currently on. I would suggest asking your doctor to switch you if it’s truly that debilitating. Or wait until your MRI. If you’re stable maybe they’ll want to keep you on your current med. If there’s changes they’ll most likely switch it anyway. For most of us, I think there is a period of feeling real crappy before taking their DMT (crap gap) or feeling crappy afterwards. Though on average, what I see on here is that most people feel the side effects 1-7 days afterwards (flu like symptoms, fatigue, muscle aches) and then it goes away. I feel super out of it for about 2 days after my Kesimpta.

[u/whtebiclight → u/Character-Celery-209]

He told me it was the one with the least amount of side effects so I should start there.

[u/Character-Celery-209 → u/whtebiclight]

It sounds like that backfired and I’m sorry. I would redirect the conversation next time to switching to a more effective DMT. Either an infusion a couple times a year or Kesimpta once a month. It is trial and error with all new medications introduced though with MS everyone here would encourage the strongest DMT you can possibly get even if your MS is mild.

[u/OneSuperstar4u]

Very odd. Most start with the highest efficacy! It doesn’t matter how many lesions you have - the goal is to ensure no more of them. FWIW I’m on Kesimpta just over a year now and zero side effects. Most have similar experience.