Ok, results from my neuro after going to him last week and thinking I was flaring (which the results show I am at least a month).
Blood work fine
MRI new small lesion that is active (existing lesions stayed the same)
He's proposing changing my med from Rebif to Copaxone and I can do a 3 day IVSM if I want.
Questions to the gang:
1. What is the benefit of staying on Rebif, switching to Copaxone vs Avonex (he's never offered) or doing no meds at all?
2. I've never understood the point of IVSM. How do they aid in stopping flares or easing of symptoms. Is this something any of you would do at this time? Last time I was on them I felt horrible!!
I'm just at wits end right now. I'm recently diagnosed (in Feb) and been on Rebif since March and feeling pretty good and I'm going back to where I started!
Thanks for the suggestions and listening to my rant!
I'm so sorry you're going through this! I'm flaring right now too, but chose not to do IVSM or oral Prednisone. My symptoms aren't bothering me enough to add another medication at this point. I feel good on them for the first few days and then I get really, really grumpy! Acupuncture seems to be helping enough that I'm good doing only that.
My last flare in Oct/Nov last year was so bad I couldn't hardly walk, my left side was completely numb, and my vision was so blurred I couldn't see. At that point my Dr. explained the steroids would basically shut my immune system down so it would stop attacking itself. I'm not sure if that's a good explanation or not.
Is this the first flare you've had since being on Rebif? How is it in relation to other flares? Did your neuro talk about the possibility of staying with it a while longer since you're feeling good?
Not sure if this helps or not. Good luck with your decision!
Thanks for the response Chris! Sorry for your pain. This is the first flare since my big bang flare and diagnosis in Feb and since being on Rebif (5 months now). My doc is leaving the decision up to me. He thinks I should switch to Copaxone, He doesn't think the Rebif is going to help slow the development of new lesions.
I was on 5 day IVSM in the hospital during my dx. It took me 3 weeks to finally be able to function somewhat normally. Not sure what combo of flare and meds caused that! Not sure yet if I'm going to do the steroids yet.
Right now I'm dealing with fatigue, dizziness/vertigo and poor cognition. I keep telling myself I've lived functioning undiagnosed for years so why should this be any different but the severity of the symptoms now are making it harder and harder to play the hero lol!!
Knowing the meds take a bit to reach their full ability, I'd not quit one 5 months in but, that's just my opinion. I'd give it it's fair shake.
Rebif can indeed slow development of new lesions just as much as the rest of the DMDs. However, overtime, if new lesions continue to pursue, then indeed a switch is in your best interest.
The first year is a bear for sure, and early in the disease is when it's most inflammatory so I'd say the combo therapy you were offered sounds on point. This combo would hopefully reduce the time of this flare, and reduce inflammation. Not to say that always works, but it does for some.
It's hard to not get frustrated when you had a reprieve and now feel like a backslide. My best advice is to remember that nothing forces the beast back to it's happy hide-away, it's moreso a combo of adjusting, re-adjusting.
Wishing you well w/the combo if that is what you end up doing.
p.s. Even superheros can't beat the beast into submission ;) Hang in there best you can, and go slllllllloooooow with all that you do, that will help.
Thanks for the words of wisdom and encouragement!!
I chose to switch to Copaxone. I read the clinical study results of that and Rebif and felt the Copaxone had a slightly better success rate long term in reducing lesion development and possible disability.
I will also be doing a 3-day IVSM and prednisone taper starting next Tuesday. I figured since I have no way of knowing how long I will be in this flare I should give myself a fighting chance to get through it quicker. My last one was ongoing at least 4 months before I finally went to hospital! At this point I'm about 1-1/2 months into this one.
I'm just taking it one day at a time and letting my body tell me what it's capable of doing and not fight it. Fighting seems to just make the symptoms worse!
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