Trying to decide which drug to try next...

[hmarie47]

Hi all...

So I have an appointment with my neuro tomorrow and she wants me to try either Tecfidera or Gilenya because I have new lesions so the copaxone "isn't working" (I question this, because it's not supposed to stop lesions, it's supposed to slow relapses, right? Confusing).

Here are the things about Tecfidera that makes me worry:

1. I already have IBS, and acid reflux, and so I already eat imodium like candy and refuse to eat when I have to leave the house, so this does not bode well. I don't take aspirin because it hurts my stomach. I generally handle medication badly, and before this diagnosis refused to even touch things like cough syrup, tylenol, and so on. The acid reflux is a present from steroids last year, for example.

2. I can't swallow large pills: I break everything in half or smaller, and I've never been able to swallow a vitamin sized pill without throwing up/choking. How big are these suckers?

3. I have to start a new job, and the GI side effect profile terrifies me. I can't miss work, but I also can't hide in the bathroom there without endangering the job/future jobs. It's a contract thing so the start date is set.

I have no idea what to do: it seems like all of my options are awful.

Aside from whining, here are my questions:

1. Is this pill huge?
2. Has anyone stayed on a low dose to avoid side effects?
3. How little can I get away with eating on this? IBS has already caused me to have a wary relationship with food, especially when I have to put on a suit and sit on a train for an hour... and I can't/won't eat before or at work, so breakfast for me is at 6pm.
4. UGH

Thanks for the space to rant: my friends are sick of hearing this.

[bree2013]

Hi all...

Here are the things about Tecfidera that makes me worry:

1. I already have IBS, and acid reflux, and so I already eat imodium like candy and refuse to eat when I have to leave the house, so this does not bode well. I don't take aspirin because it hurts my stomach. I generally handle medication badly, and before this diagnosis refused to even touch things like cough syrup, tylenol, and so on. The acid reflux is a present from steroids last year, for example.

2. I can't swallow large pills: I break everything in half or smaller, and I've never been able to swallow a vitamin sized pill without throwing up/choking. How big are these suckers?

3. I have to start a new job, and the GI side effect profile terrifies me. I can't miss work, but I also can't hide in the bathroom there without endangering the job/future jobs. It's a contract thing so the start date is set.

I have no idea what to do: it seems like all of my options are awful.

Aside from whining, here are my questions:

1. Is this pill huge?
2. Has anyone stayed on a low dose to avoid side effects?
3. How little can I get away with eating on this? IBS has already caused me to have a wary relationship with food, especially when I have to put on a suit and sit on a train for an hour... and I can't/won't eat before or at work, so breakfast for me is at 6pm.
4. UGH

Thanks for the space to rant: my friends are sick of hearing this.

Having IBS may be a problem with tec but you might be able to work it out if you eat with each dose. That seems to be a must -- especially when first starting out.

Some have stayed on the low dose longer than the recommended time frame and gradually titer to the 240 dose. This is definitely something you want to discuss with your doctor if you're considering tecfidera.

Tec does do damage to the WBCs -- not everyone seems to be too adversely affected by this though -- you might be one of those. Tec is my first DMT and I've done well on it except it has lowered by WBC quite a bit. BUT, I haven't gotten sick and I feel fairly good. I've been in & out of hospitals for two months (visiting) and not even a cold.

I understand your trepidation -- it's hard deciding. Sounds like your were happy on Copaxone but your doc wants you to try something else because of new lesions -- there is a Gilenya forum with lots of information there.

Good luck in your decision making process -- please keep us posted.

Bree