Difficult decisions

Punchy · Posted: Mon Feb 04, 2008 5:20 pm Post subject: Difficult decisions

I've been on Rebif for 11 months now and I am done. I just can't do it anymore as the side effects are just too bad. I am missing a tonne of work, and I am beyond stressed about that on top of the constant sickness. I cry some mornings because I don't want to get out of bed. Sad

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.

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

i feel for you punchy, i am watching my stepdad struggle with the interferon they use to fight cancer and it looks like a real mega-bear. i am pretty glad i said no thanks to rebif, even though it's not the same interferon.

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!

dignan · Family Elder Joined: Aug 12, 2004 Posts: 1186

Punchy, have you considered something that hasn't been officially approved like minocycline / doxycycline, or LDN? They'd be relatively inexpensive, non-toxic things to try if you're feeling a bit naked without any protection for the next 6 months. Not everbody's cup of tea, but thought I'd run it up the flag pole, see if anybody salutes...

Loriyas · Posted: Tue Feb 05, 2008 7:46 am Post subject:

I'll salute Dignan's suggestion! I tried minocycline for several months and actually saw some improvement. Enough so that I researched and then started the entire antbiotic protocol. You won't be able to do that once you become pregnant but at least the minoycline may offer you something. Brock hs been taking minocycline for some time and he may come along with a comment on how it is working for him. Good luck-with everything!

Lori

robbie · Posted: Tue Feb 05, 2008 9:05 am Post subject:

Hi punchy I think the hardest decision of your post would be having a baby in your situation, thats huge. Don't worry to much about stopping the drugs you got a really good chance it won't matter.
_________________
~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out

Anecdote · Posted: Tue Feb 05, 2008 9:21 am Post subject:

I also salute Dignan's idea. It will give youm reassurance and you would only need to stop it once you became pregnant.

Sarah
_________________
An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.

TwistedHelix · Posted: Tue Feb 05, 2008 12:20 pm Post subject:

I'd go with Dignan's suggestion: deciding to stop the treatment would probably make you feel very vulnerable so finding another option sounds like a good way to avoid that.
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.

Good luck,
_________________
Dom

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

personally i am not attracted by the minocycline/doxycycline, or LDN therapies. however, one or the other may make sense for you if you read up on them, punchy.

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.

Wonderfulworld · Family Elder Joined: Aug 28, 2006 Posts: 291

Hi Punchy
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, Wink

RedSonja · Posted: Thu Feb 07, 2008 5:32 am Post subject:

Are you sure you will start a baby as soon as you decide it's right?
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.
_________________
Bibo ergo sum

MrsGeorge · Family Elder Joined: Dec 11, 2007 Posts: 238

As I am only at the beginning of the journey I can't be that much help but it is definiterly worth talking to your Neuro and telling him your plans. He can best advise you if it's worth switching meds to something that is more low-risk when trying to concieve. Good luck with it.

Punchy · Posted: Thu Feb 07, 2008 9:35 am Post subject:

Thanks everyone, you've given me lots to chew on.

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.

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

hi punchy, i think if you spend some time reading, you can probably find something that will have some benefits for you, and potentially for your baby too. in fact, some of the things that they will likely recommend to you as a pregnant (or expectant) mother may have some positive effects on your own health anyway.

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!

rasnet6 · Family Member Joined: Jul 13, 2004 Posts: 32 Location: uk

I understand what you are going through - its tough making the right decisions.

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

Rach xx

viper498 · Posted: Thu Feb 07, 2008 4:55 pm Post subject:

Punchy,

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.

Regards,
Brock