I have my yearly appointment with my neurologist next week, and I plan to tell him I don't want the meds anymore.
But the plot thickens. My husband and I are planning to start trying for a baby this August, meaning I would have to go off the Rebif anyway in early June (to prepare for pregnancy). So if I stop Rebif now, I get a 6ish month window of vulnerability until I am protected by pregnancy (here's hoping it doesn't take 6 months to get knocked up).
I would like to keep taking it but I just can't stand it anymore. The only option I can think of is to take a leave from work for three months in order to finish it. But I don't think one could take disability leave because of a medication they're taking, can they?
UGH - it seems that with MS every decision has to be a big one.
i've been talking to my stepdad about maybe taking a break from the interferon, to give himself a rest from all the side effects. he has to take it for i think 10 more months. i'm planning to show him some of the research on alternatives so that he can decide if he feels safe taking a month off from side effects here and there. maybe you could look at some alternatives too, either to give yourself a month off from rebif now, or if you decide to stick it out, to give you some measure of protection down the road in june.
certainly is a tough kind of decision to make!
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It's a very difficult choice to make, but if I was in your situation * I think I would seriously question whether something that makes you feel so bad is worth taking anyway. It will be interesting to hear what the neurologist says.
* chances are that I probably won't be.
maybe if you briefly review an wide array of alternatives and then pick a few to investigate further, ones that resonate best with how you think and feel, maybe then you might find an answer that works for your case. perhaps even a personalized combination of a few alternatives.
and maybe you CAN take some leave due to side effects. my stepdad certainly is! maybe then you could rest and do some reading and thinking without worrying about work as much.
that's a really tough choice - I can relate. I had a terrible time on Rebif and stuck it out for 4 years, of which the last 2 were hell.
I transferred to Copaxone and did really well on that. Thing is though I feel myself that Copaxone took about 6 months to fully reach effect so you might not want to switch for that time period.
I am 8 months pregnant now, I stopped Copaxone this time before I conceived, but I did lose 3 pregnancies to early miscarriage when I was taking Copaxone - I will never know if they would have happened anyway or if the Copaxone had an effect.
I don't think I can help you make a decision about the 6 months window in your meds, but I would advise you to minimise the time it takes you to conceive as the less time it takes the less time you'll be unprotected by MS meds.
Things I found that helped were to buy cheap ovulation prediction tests online, we used the "Sperm meets egg" plan! - http://www.pregnancyloss.info/sperm_meets_egg_plan.htm, and both of us taking prenatal supplements. Of course you can never tell if any of these methods do speed up conception but I did conceive very quickly.
Wishing you the very best of luck with it all,
My man and I waited a year after I gave up the pill before it "worked". Little rascals, they turn up when they feel like it.
So don't make too many plans until you are sure the baby has actually started.
I don't know about Rebif, but Cop carries on working for months or years, so giving up may not mean you are free of it straight away.
Wonderfulworld, you've really hit the nail on the head; I am wary of starting a new medication for just three months and then have to go off it again. I'm also extremely wary of being on any other sort of therapy, natural included, when trying to conceive.
And no, I don't know that I'll get pregnant right away but all we can do is plan our best, right?
I wish this disease could have at least waited another five years to show up.
I will update you on my decision after my MS Clinic appointment next week.
i just remembered also, that an acquaintance of my ex had a difficult time getting pregnant and she and her husband spent quite some time and a lot of money pursuing mainstream channels attempting to get pregnant. after a few years they went to the naturopath and got pregnant promptly and now have a toddler. so wary is good, but not i don't think to the point of ruling it out without reading up on it.
good luck sorting through things!
Me and my husband are trying for a family and we stopped copaxone for a month before we started trying. We got pregnant immediatley, but miscarried soon after. Since then we have continued trying and it has been a huge dissapointment to us every month that we have not been sucessfull, and combined with my worries about being off my medication its hardly suprising we havent got pregnant.
Currently I have been off my copaxone for 8 months, and honestly I am enjoying every minute of it. So much so that my neuro has agreed to keep me off the meds until i get worse or request to go back on them. (his current thinking is that being on the disease modifiers for a period of time may be enough to switch off the disease process -in some of the EXTREMELY lucky people)
Now I am not sure i can believe him on that one. But all in all I am happy off the meds, and have not gone rapidly down hill.
You need to think about what would be better for you, if you are seriously thinking about having a child you need to get yourself as healthy and stress free as possible before you start. What has suprised me the most is how stressful trying for a child is, and Im sure if i was a bit more healthy and more prepared beforehand I would have found it much easier.
I wish you and your husband the best of luck with whatever you decide
I'd recommend taking minocycline. As Loriyas said I've been taking it and I've had no problems since. Of course that is anecdotal, but still I have had no negative reaction to it and no relapses since being on it. My EDSS is 0 currently however I had two relapses fairly close together in 2007 which was very scary. I started taking Minocycline and so far so good. I think if you get anything out of it at all it is Neuroprotection, or at least that is what I am banking on. My MRI in '07 wasn't good so I have another MRI scheduled for 04/08... I hope it will look better... If you have any questions just let me know.