Yes, every drug has side effects. But there are certain drugs like Ketek - which NO ONE with MG should have - that are worse for people with certain diseases.

Taking drugs is always between a doctor and a patient. What we do here is point things out. After that, it's up to each individual what they want to do.

Dottie, It's totally up to you if you want to take this or not. You could always try it and see what happens. Maybe have a discussion with your regular neurologist about it first.

Erin, I think nightmares are a fairly significant side effect. At least discuss it with your doctor.

Annie

An observation - and opinion:

It would be great if there was one central contact - besides the patient - to put all the 'treatment' pieces together. But it simply isn't real life. Most of us have between two and twenty (lol) doctors. And while the pcp is theoretically the control point, many of us never see our pcp before filling a script from a specialist.

And then there is the pharmacist. Just about every other time I go to pick up a script, there's a different person back there! Do I really think they check my med file for interactions between the meds ... I don't count on it.

And yes, every script comes with a list of contraindications and side effects, and possible future problems with use. And most over the counter have verbage as well. And Alice, I totally agree that much of what is on these meds is a direct result of our litigious society and may even be statistically unlikely. But I don't want to be the uninformed statistically insignificant oops!

Ultimately, patients must educate themselves about the pros and cons of meds before deciding to taking them. (Thank goodness for internet!)

Sue

Hey Erin,

Sorry that you've been feeling so crumby lately! I hope that you can get some relief soon...Having pain on top of the weakness sucks a lot...

I was wondering how long you've been having the pain...I wonder if the reduction in prednisone might be 'uncovering' pain that it was masking, or is maybe some withdrawal from the prednisone....My doc. said that withdrawing can cause muscle/joint pain for a bit...So that's at least excerbating it, but will get better with time...

Ultimately, I think that it's very good that you've tapered down on the prednisone...If it was covering up something, it will at least be exposed for what it is...On the other hand, it may have caused a lot of these problems that you're having...All in all, I think that you'll be absorbing nutrients better, no more robbing your bones of calcium, your muscle tissue should get stronger, you've already lost quite a bit of weight, you wont get infections as often, if you had palpitations/anxiety/depression, that should get better too...And the list goes on and on...:) You can start recovering from the prednisone, get some strength from the IViG, take some supplements, and you'll be feeling great soon...It might even help with your iron deficiency...I don't know if your erythrmocite (sp.? lol) is low, but mine is, and it's from prednisone...I think someone mentioned before that this can cause an iron deficiency....

I have come across some people taking neurontin and they did say that they were having nightmares...I think that it might be a common side-effect with these types of drugs...I know that lyrica and cymbalta (which I think might be kinda similar, maybe?) can cause nightmares too...It definately seems like an unpleasant side-effect...I hope that it can be resolved somehow!

Anyway, I think that you'll be feeling better pretty soon!:):hug:

Nicky