Time to get back on meds...Your thoughts?

[dancinthrulife]

Hi everyone! I had my first child (a beautiful baby girl) 8 weeks ago now. Immediately following a c-section I had a massive exacerbation but have recovered from that and am beginning to stop nursing, so that I can get back on the meds I need!

When I was first diagnosed, my doctor started me on Beta. I did not react well and in fact became so ill that I was hospitalized (my liver enzymes reached a level nearing liver failure). My doctor has suggested the whole thing may have been some sort of freak allergy to interferon-based drugs, so now that I'm looking for a new drug I won't be taking Beta, Avonex or Rebif.

What are you taking? How have you experienced the side effects? I know that it'll be different for everyone but I'm curious to get your thoughts on your current drugs. Have you had any bad experiences with other drugs?

Generally, how do you feel??

I appreciate the input and help!

[mjan]

First of all, CONGRATS on your adorable baby girl!! YAH!!

Sorry for what you went through with your first DMD. I have heard of a test for antibodies I believe, but don't quote me, that tests if you can tolerate interferons. If I were you I would avoid them, given your first bad experience.

I am not on DMDs because I am soo sensitive to meds and their interactions. What I would have you consider is that your body/hormones are changing following a baby, add on stressors like no sleep, and you will probably be different than those folks on DMDs who were post partum.

Just consider that ...good luck in figuring this out.
Enjoy your baby.. they remind me of cable TV where you can watch them for hours, minus commercials!! LOL

Keep us informed as to how you are doing~

Warmly, Jan

[dalechilders51]

Meds

I came off all the interferons when they stopped working for me and switched to Tysabri. I've been on it 6 years and it has worked well for me. Other than an occasional headache after the infusion I really don't have side effects.. I know this is a big decision and this is just my experience not a recomendation. And congratulations on your daughter. Take care Dale

[22cyclist]

I took Copaxone for many years and it worked well for me. It had no side effect aside from the injection site reactions, but that got better when I didn't use the autoinjector. I am now on Tysabri, but like Dale, this med is a major decision. I would not recommend this one. I have no side effects from it, but the risk of PML is a lot for a new mom.

There are some new pills out, you can read about them in our medication section and see how people like them, and what side effects they have had.

Good luck with whatever you go with!
Take care
Lisa
Moderation Team

[Mable]

Congrats on the baby. And also on recovering from a massive exacerbation. Ugh!

I'm taking Copaxone, but don't know if it's working. I haven't had an exacerbation since I was diagnosed a year ago. But my only noticeable exacerbation was 8 years before my diagnoses, so it's hard to say how effective it's been. I'll have an MRI in a few weeks and see.

The good thing about Copaxone is that it doesn't have many side effects for most people. And some people are responders. That is, they do really well on it and it makes a significant difference in their disease.

But that's just for some people. A lot more do really well on Tysabri. Two new drugs awaiting approval, BG-12 and Alemtuzumab, are also more powerful, but perhaps a little or a lot more risky than Copaxone and Tysabri.

That's the thing about MS. It's a disease of a lot of maybes, isn't it?

And, sorry for rattling on, but sometimes I think if I got on Tysabri, I would feel better more of the time. I'm often a little light-headed feeling, and one leg is slightly weak. I look and act healthy, but I don't often feel that way. Stronger drugs can reverse a few of those symptoms for some people, I hear.

Other times, I think I'll just stick with Copaxone and it's low side effect profile. Why compromise the rest of my health for a stronger drug?

A disease of maybes.

[fishead]

Dancinthrulife,

Congrats on your personal "diaper filler , cryer, squealer, and (most importantly) unconditional love GIVER!!!! If you are not breast feeding, I would get on a DMD as quickly as possible. DO come on to these boards so you can share what is happening, so that others in your "spot"can glean information.

Hope this can be done and hope it works out.

[dancinthrulife]

Thank you all for the congratulations and advice. I do think that PML is too great a risk for me to take at this point in my life without giving other meds a try first. After this and some other research, I think Copaxone is the way to go....Wish me luck!

[onlyairfare]

Congratulations on the new baby!

I took Copaxone for about 6 years, no problems except for some site reactions. I quit it only because the co-pay got too expensive.

Now I am taking Gilenya, a daily pill. I was OK with the shots, but I certainly don't miss them. I haven't had any problems with Gilenya and I have been on it for about 3 months now.

I've had MS for decades, and have been fortunate in that I have had very few relapses the past 10 years - whether due to the DMD or just being lucky I can't say.

Though doctors encourage breastfeeding, babies grow up well on formula too, so I hope you don't feel bad about changing to formula feeding so you can get back on those meds you need; your daughter needs you to be as healthy as possible! I had other medical problems that made me have to quit nursing my youngest at two weeks of age when I had nursed his sisters until they were older. All three are healthy and have done well.