Sorry, doc…for me, breast is best

I’d always wanted children, and being diagnosed with MS didn’t change that. I’d also always wanted to breastfeed. It was important to me for several reasons: the health benefits to my baby, the convenience factor—no mixing bottles, etc.—the benefits to me as a nursing mom (faster postpartum weight loss, delayed hormone crash, possibly delayed return of menstruation and fertility) and the bonding time for both of us.

When I discussed my family plans with my neurologist, he assured me that of course having children would be no problem, and I could go ahead and go back on Rebif afterward. When I mentioned that I planned to breastfeed, he suggested that that would be perfectly appropriate, and—from what I remember him saying—around 3 months or so. (I am not directly quoting but that was the gist of what I remember being said.)

Um….no….I don’t think I’ll be doing that. That doesn’t work for me.

Rebif worked fabulously for me while I took it. For four years, I experienced zero relapses. The first came only after I had stopped Rebif for six months. I have no problem returning to it someday, as I know it worked and the benefits outweigh the annoyance of thrice-weekly shots (as discussed in an earlier post). But right now, for me, nursing my daughter is more important than jumping right back into an MS treatment regimen. I’m planning to breastfeed exclusively for the first six months of her life, and would like to continue after the addition of solid food until she’s a year old.

I guess it’s a calculated risk. From prior experience, obviously the chance of another relapse is higher if I stay off the injection. However, breastfeeding and the hormone levels that go along with it continue to offer some protection. And since I’d like to have even more children, if I were to get pregnant again after weaning—which would mean even longer off Rebif—that same hypothetical pregnancy would offer further protection still.

Kira needs her mom; a mom who is not disabled would be preferred. But I’ll be 35 in August of this year, and my fertility window sadly won’t be open forever. And Kira herself will only be this little just this once…let me feed her, doctor. Let me enjoy this closeness as in just these short months of her total dependence only I can feed her. The breast is the best for us.

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Being & staying compliant with my treatment regimen…..or not so much

I took the Rebif injection from May 2011 until the first week of September 2014. I started out fierce, determined to be always compliant with the regimen.

Uh-huh. As time wore on I started taking it at more random times on the appointed day. Then came the dreaded day, years ago, when I decided I didn’t feel like taking my injection some Monday, Wednesday, or Friday and pushed it to the next day. Which meant that it pushed the following injection back. And so on and so forth.

During my three and a half years on Rebif I probably outright skipped around 10 or so doses. Those happened towards the end of my time taking it. Not bad out of over 500 injections but still. I didn’t want to be That Person who skips doses because it’s inconvenient and annoying.

My side effects were noticeable but not horrible. It wasn’t something I was incapable of dealing with…I just got lazy.

I’ve been off it now for 8 months. If we’re successful in getting pregnant, I’ll go back on afterwards, and the fight to stay compliant will begin again.

Neurologist visit today

I saw my neurologist again today. Uneventful visit, except my mother was there with me and she got to ask questions.

I’m doing fine. I didn’t get my latest bloodwork done, which didn’t enable me to get an MRI before this doctor visit, but that’s OK. New plan: get bloodwork done ASAP; have MRI in August; go off Rebif in September to try to conceive; see Dr. Rosenberg again in November. Fabulous.

And you know what that means—only 5 more months of Rebif for awhile. (I’m over it…a post coming soon about my recent difficulties with staying compliant.)

22mcg Rebif…A Nice Little Vacation

A couple of months ago, I was told (after some routine blood work ordered by my neurologist) that my white blood cell count was low. I was told to halve my usual 44mcg thrice-weekly dose of Rebif using a titration clip until the next blood test, which I had this past Monday.

It was around a month and a half that I was on the half dose, and it really was like a vacation from the drug. I feel that I tolerate Rebif very well, and (whether attributable to Rebif or not), I’ve been relapse-free for two years so something must be going right. BUT, 44mcg injections are often painful and give me full-body aches the next day. With 22mcg, I had none of that.

Today I was told that the white blood cell count had come up and I can re-start full dose injections.

Yay.

(Disclaimer: despite complaining about the 44mcg dose of Rebif, I really do enjoy being relapse-free. I am grateful for what I have!)