So we went to see the specialists last week. Following my two relapses this year, I now qualify to go on one of the Disease Modifying Therapies. There are four different types, all injections that tend to reduce the number of relapses by about a third.
If you're reading this blog, you probably know just as much about these as I do! If not, have a good look through the MSDecisions website for some proper information.
At the end of the day, the Neurologist and MS nurse recommended Rebif. They demonstrated a couple of auto-injectors (including one called Rebi smart, which looks kind of like a chunkier iPod that tracks your injections and dosage, which would be handy. Thinking about it, a chunkier iPod is a Zune, isn't it?).
So all in all, this sounds pretty cool...
Except for the fact that all of these drugs advise you not to try for a baby when you're taking them. They're all very explicit about the fact that WOMEN shouldn't try to get pregnant. They're somewhat less explicit about the effect that they may or not have on my... "little swimmers" (ahem).
Emma and I are in our mid-30s, we've been together for 6 years, married for 3, so this is something we're naturally thinking about.
So we're now having to gamble on my health. I either stay off the drugs and get on with what the nurse called "making them babbys". Or I start the injections for 6 months to a year, then come off them for 6 months, THEN we start trying for a baby.
And like I said, we're in our mid 30s; not a massive issue for me, but definitely one for Emma. But having said that, the longer we leave it, the more chance there is that I will be... shall we say, "less active" than I would hope.
God, I wish we didn't have to think about these things!
I looked into this, actually, and like you found only that the advice is for women not to be injecting when they conceive. The wisdom for us guys seems to be a not-very-surprising caution first and most doctors, when they think about it, will advise you to come off for 3 months before trying to conceive with your partner.
ReplyDeleteI have a friend whose partner has MS and injects Avonex. They have one lovely, healthy daughter already, conceived on Avonex, and another child on the way. Who knows? Sounds like the issues would be around conception, but who really knows> I guess you roll the dice. Worked out fine for them though, in the absence of any definitive advice either way.
Good luck.
Interesting to hear of someone else's decision on DMT too. I went through all this back in April/May and came out with bioset Avonex. Different strokes for different folks, right? I was worried about the jabs to start with, but really an auto-injector has proved to be unneccessary for me.
Um. Good luck again.
ST
hey there - thanks a lot for the comment! following this, I've been having a couple of dodgy days and we've decided to buy a house - so - safety first and to hopefully avoid another relapse - i'm going to start with the injections. interesting to hear your friend's experience!
ReplyDeleteregards the different DMTs, the way i understand it, they all do pretty much the same thing, so i'll probably have to spend some time figuring out which one suits me - the lot of a guinea pig, eh?
Good luck to you, sir!
yeah - I braved the long needle for the once a week / doesn't need to be kept in a fridge thing. Annoying that you never really know if it's working, but I found I couldn't sit there and do nothing.
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