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Hounds
Regular Member


Date Joined Jul 2014
Total Posts : 30
   Posted 8/20/2015 12:21 PM (GMT -6)   
So, I had a 6 month follow up with neurologist yesterday (it is within the MS clinic). I've been feeling a little cruddy for several weeks, so it was good that I had the appointment already set up. They feel as though I'm in flare, as the drop foot is back, electrical feeling in arm has gotten much worse, I have a lot of numbness on my right side and a few other things. The big one being several episodes of extreme dizziness.

They are ordering an MRI on C-spine and brain with contrast and depending on what the MRI says, they may do the following:

- If new lesions, stop Rebif and probable course of steroids.
- If no new lesions, probably a course of steroids.

I'm surprised that they would be so quick to change the Rebif. I've only been on it for a year and this is really my first flare since starting it. Has anyone else had this happen on changing meds? From what I understand Rebif is a pretty aggressive DMD.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 8/21/2015 4:26 PM (GMT -6)   
Ugh!! I'm sorry! It seems too soon even with a flare to stop and start over with a new medication. I flared 8 months after starting copaxone. I was sure my doctor was going to say we need to try something else. She didn't ! She said there's always going to be some progression. These meds aren't a cure unfortunately.

We waited and that was 9 years ago. I have experienced very slow progression. So even with that flare and some others, my over-all experience has been good.

I sincerely hope this will be your experience with rebif! Hang in there. Keep me posted. Have you done steroids yet?
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Hounds
Regular Member


Date Joined Jul 2014
Total Posts : 30
   Posted 8/24/2015 9:16 AM (GMT -6)   
Hi Gretchen,

I had my MRI yesterday and the doctor wants to wait for those results before recommending a course of action, including steriods. So I'm in a waiting period at the moment.

My Rebif nurse came over the day after my neuro appointment and I discussed the possibility of changing meds again with her. We both concluded that it seems too soon to switch yet again. Before this "flare" or whatever it is, I felt great. The best I have felt in a long time.

Once the MRI results are in, I'll talk with the doctor and let her know that I don't want to change just yet.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 8/25/2015 10:45 AM (GMT -6)   
Good plan. Remember, it's ultimately your decision. MS is unpredictable and doctors don't know everything. You need to do what you think is best.

If you've been feeling great then there's an excellent chance you'll feel excellent again soon!!

The steroids are always just an option as well. I no longer do them as I feel the side effects outweigh the symptom relief. I just rest and take it easy. I take time off from work and take good care of me. That typically gets me back on my feet just as soon. Everyone is different.

Keep us posted. I'd like to know how you're doing.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Hounds
Regular Member


Date Joined Jul 2014
Total Posts : 30
   Posted 8/25/2015 3:48 PM (GMT -6)   
The MRI results are in, NO NEW LESIONS! woo hoo! I consider that to be a win.

I've filled out the FMLA paperwork, just in case and I see the doctor again on Sept 2nd. However, I do expect them to call me if steroids are the option of choice.

This is the first time since dx, that I've submitted the paperwork and can't help but thing that work stress is contributing to my symptoms. I was on vacation in mid July and I never felt better... coincidence, I think not. :)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 8/25/2015 7:05 PM (GMT -6)   
Absolutely not! Stress is a major trigger! If work is a major stressor for you then it must be managed. Either go on disibility, find a new job with less stress or figure out how to keep your current job as low stress as possible.

I'm so happy to hear you have no new lesions.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 8/26/2015 6:16 PM (GMT -6)   
I agree with Gretchen--stress is a major trigger. I avoid stress at all costs as I immediately notice a worsening of my symptoms as soon as I feel it. Work stress and emotional stress are the worst, but even physical stress (over exertion) can make me relapse.

I was taken off Copaxone just 4 months after starting it because I had a major flare. Switched to Tysabri and been flare free for about four years. If you are comfortable with Rebif, I wouldn't switch. I like Tysabri because it's only once every 28 days--and I don't do the injection, someone else does (it's actually an infusion--takes about an hour).

I hate steroid treatments and refuse to ever do it ever again. It does nothing for me but make me feel worse.

Good luck and hope you start feeling better soon!

Hounds
Regular Member


Date Joined Jul 2014
Total Posts : 30
   Posted 8/31/2015 8:41 AM (GMT -6)   
We are not doing steroids, thank goodness! However, they are pulling me out of work for a bit to get things to calm down. This will be a good test to see if work is triggering these symptoms.

Thanks for the feedback, as I was starting to think that it was just me and I was being a "baby" about things. We are down two people in our department and I've been picking up most of the slack.

Tysabri was going to be the next line of action if they were going to take me off the Rebif but since there are no new lesions, I can stay on :)
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