Plegridy update

[cjtmn]

I've now been on Plegridy for 6 months and had my first follow up. This is my first DMD and it's been a beast. I finally had 2 good injections with minimal side effects, and then last Thursday was thrown for a loop with some of the worst post injection side effects that I've had in several months.

Great news from the neuro this morning, though - my MRIs are stable (last ones were taken in Oct 2015) and my blood work looks great. My Vitamin D levels are finally acceptable after 9 months and my neurological exam was NORMAL! Soooooo, I guess I will be staying on this awhile longer to see if I can fully adjust. If I just can't take it, my doc recommended trying Rebif to see if the more frequent, lower dose interferon would be easier to tolerate. Otherwise Aubagio or Tecfidera are the next option. She did not recommend going on Copaxone as a 2nd drug.

In my best dreams she would have told me that my lesions have shrunk/disappeared, but given ongoing Sx, I didn't expect that. I'm just delighted with this news and while I know a relapse can occur at any time, I feel like 9 months into my Dx, I'm actually getting a grip on this and managing it as best I can.

Next hurdle: keep my stress down and get through the next month without a relapse. September has been "weird neurological issues" month for the last 2 years. I'm ready to see that cycle broken.

One DMD question: if/when relapses occur while on a DMD, are they more severe? Just wondering if they come on stronger in reaction to the drugs. I meant to ask the doc today, but was too busy on Cloud 9 after her great news :)

Cheryl

[Corriel]

Great news!! Good for you. Sometimes those darned DMD side effects just come on out of the blue.

I had relapses while on 2 different DMDs. The first one doesn't really count as being on a DMD because I had only been on Rebif for 3 months when the relapse occurred. It was not worse than usual but had none of my normal relapse symptoms. Everything was all new and one of those symptoms, bicep spasticity in one arm (mostly) lasted well over a year. Then poof, gone.

My second relapse was after 8 months on Tecfidera. Very mild by relapse standards but I lost a significant amount of grip strength. It took quite a while for an improvement but now I seem to have lost quite a bit and it seems to be permanent now (relapse was Jan/Feb 2015).

I am thrilled that you don't have new lesions and that your neuro exam was "normal". Embrace it my friend and good job for sticking with Plegridy despite it's challenges.

I hope you plan to celebrate somehow, you deserve it!

Corrie

[TLC1104]

Hi,
So happy for the great news & fingers crossed for you that you get even more of those good days.
Take care.
T

[supermum_ms]

Hey babe that must of been a wonderfully uplifting neuro consult, 'normal' must be giving you a bit of a boost, you keep on soldiering on and i'll keep my fingers and toes crossed that your get a lot more 'minimal side effects' days under your belt :D

"if/when relapses occur while on a DMD, are they more severe?" as far as i'm aware you might be the first person to ask the question here, it's a good one hmm being on a DMD is not really suppose to have any affect on relapses, i think it comes down to relapses having too much of an unpredictable nature about them to start with ie return of some/all previously remitted, worsening of the everyday and adding something new, and with the addition of there being a combination of symptoms and severity being unique to the MSer..

You go babe, hugs......JJ