Hi Lisa--

After reading various recent blog posts and being once again reminded of how SUBJECTIVE the whole MS experience is, I'll give my own DMD story. This is how  medication personally affects me, but unfortunately others may not have the same experience. We're all different, as you've stated, and not every DMD will work on every person. So here goes:

I didn't take any medications for my MS for the first 7 years that I had it. I was in the "probable" MS phase and they were not offered to me at that point. I took no symptom-managing meds either, because at that point I had no ongoing, excrutiating symptoms.

I had my first severe attack with MS in the spring of 2005---double vision. I was finally diagnosed and I started in a clinical trial for Betaseron. I was not regularly on the medication for a while because I was having problems adjusting to the flu-like side effects. During that year I proceded to have multiple smaller attacks and I needed to take Neurontin for neurological pain and Baclofen for muscle rigidity and spasticity. The clinical trial was not going well at all and I wasn't taking the Betaseron like I should have because of stress and just feeling awful. I switched over to my current neurologist, took a round of steroids, and started from scratch again with the Betaseron in the early summer of 2006.

Since that time I have stopped taking the Baclofen and the Neurontin because I do not need them.  My symptoms have been pretty manageable during remissions. I get fatigue, tingling, and some "lead limbs" if I overdo it, and I have some issues with my bladder and bowel, but these are all tolerable without symptom-managing meds. Since taking the Betaseron, I went from the summer of 2006 until the summer of 2008 without a relapse---- something that has never happened before. Currently I am doing well. But I am also home writing part-time and on disability, so it's hard to say how I would physically be if I was still out in the workforce full-time. Again, subjectivity.

My side-effects from the Betaseron include flu-like symptoms--- headaches, fever, chills, body aches and so on---- but they are generally managable without Tylenol or Advil. I am also home so I can rest up if I have a "bad" shot (once every 5 or 6 shots.) I have scarring where I do my shots and it's getting a bit harder to find fresh spots to inject. I always feel like I'm one pace ahead of the devil. But the positive effects SO outweigh the negative ones. I feel like Betaseron has been my lifesaver, as my neurologist was about to put me on Tysabri if we couldn't get the MS under control.

I'll stick with the Betaseron until something better comes along. I know what it's like to have bad attacks without being on a DMD, and I'll use everything in my power to prevent such attacks---- being rendered bedridden for days on end and in excrutiating pain/not being able to walk without a cane--- from reoccuring. As my neurologist states: we will go further along in the disease course, and oftentimes the attacks become worse and longer in duration. I think 2-3 months of sickness, steroids, and recuperation each year or so are enough for me. This is while being ON the Betaseron.

Thanks for letting me air this monologue.....It's my reality and everyone's MS reality is different.

Jen

Maris B. Mohr

2/22/09 5:51am

Hi Jen,

 

I've been on Betaferon for a bit over 8 years now. I had the flu-ish reaction mildly, once bad, during the first 6 weeks of titration and then it all stopped. It's hard to understand why you're still having those sx. Have you discussed this with your neuro?

 

I do my shots in the morning early before I go out of the house. That way I don't have to think about it any more for a couple of days. It makes my life a lot easier.

 

As far as whether or not it has helped me in any way, I was on Copaxone for almost 2 years before the Beta. I switched because my life had become one long, never-ending exacerbation. At least the Beta calmed that down. I still never have days without sx. Some are worse than others, but it's still constant and I can't say that it's ever actually a relapse or just a worse day or period.

 

My neuro is satisfied with my stable brain mass, so I guess I stick with the Beta until someone develops something for SPMS.

 

Feel good and be happy .

 

Peace & Serenity,

Maris