Neurotin
 

hi erin
 

Haven't been on much lately, not doing so good.

Just looked up your drugs and its a drug they mainly use for epilepsy but its also used for the treatment of neuropathic pain.

Your pain the burning sensations etc are what they would class as neuropathy. So thats why they are treating it with that. As I think they believe that the pain centres in the brain are all confused with fibromyalgia so it would be a way of calming them down. Sorry my post isn't as eloquant as usual, but Im a bit foggy!

Love
Rach

Hey Rach!
 

Thank you m'dear!:hug: All I do know is that it has really helped but causes crazy bad nightmares! When I see Dr. I today I'll talk to him about it! Are you better today?

love,
Erin:hug:

Oh great Erin!!
 

Erin, Any drug that affects the central nervous system has potential for affecting MG; and causing CNS side effects.


http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

www.pfizer.com/files/products/uspi_neurontin.pdf

Have you asked your pharmacist to check on drug interactions too? When you are on more than one drug, you can have interactions. And since Neurontin is relatively contraindicated in MG, I'm surprised the pharmacist didn't red flag the prescription.

Did you tell your neuro or pharmacist about the side effect?

And then if you add something like a quinolone while you are taking neurontin, you could progress to hallucinations. Geez!!!

So be careful, please. This can be dangerous stuff. If you're having nightmares, what else is it doing to you? I know you have pain of an undetermined source that is really hard. I hope they can figure out something for you that won't make you worse. Acupuncture? Seriously, it has been shown to work for pain.

Annie

Neurontin
 

Hi Erin,
My 16 year old son is on neurontin due to Post Traumatic Stress Syndrome following an accident he had a couple of years ago. He takes it for anxiety. He also complains of having nightmares. We have talked with his Dr. about it and he is now on 400 mg in the morning and 400 mg at night. That is down from 800 mg 4 x a day. That has helped alot. His Dr. also suggested he take a Melatonin at night to help relax him. I have taken a melatonin at night myself for years. My son takes 3 mg at bedtime and I take 1 1/2 mg. You might run the Melatonin by your Neuro but my Drs. all know I take it and no one has ever said it could worsen my MG. How many mg's do you take per day and how many times per day? Maybe you could avoid taking them before bed and see if that helps.
Kendra

Hi Erin
 

Just wanted to let you and everyone else know Im pretty poorly at the moment. Somedays I can get on and somedays I can't. Hence why I can go for days without posting and other days I have to put my 2 cents in everywhere!

I have emailed France again as I haven't heard from them and I telephoned the guy in Londons secretary to see if I could see him as a private patient. Unfortunately both these have drawn a blank at present.

Its now on a good day taking 120mg of Mestinon to get my eye to open, but I still have bouts of double vision.
It doesn't really resolve my weakness.

I am reading everyones posts and would like to say hi and welcome to our newbies, sorry if I haven't welcomed you personally yet!

Love
Rach

Hey Rach,

Sorry to hear you're not doing so well. I too go days or even a week not posting when I'm not feeling up to it. I'm sorry too that you haven't heard anything from France or London. Maybe they'll both come through at the same time! I hope you hear something soon. In the meantime, just keep hanging in there. We're all pulling for you.;)

Big Hugs,
Pat

No way!!
 

Whoa there, Annie & Erin, after reading Phizer's log on adversities for this drug, I'm not taking it...took 1 cap, no more....it's carcinogenic as well, that scares me, esp re pancreatic cancer; guess i'll stick to ibuprofen & naproxen for the pain....no wonder my pcp didn't like this drug, & the young neurosurgeon who prescribed it couldn't care less...he gets very angry when a patient doesn't just cowtow & do what he says....oh well, I just won't tell......

Dottie

risk benefit ratio
 

in any medication that is prescribed (or with-held) there should be a serious consideration of the potential risks vs. the expected benefits.

this is of course stastitical, as no one has a "crystal ball" that can tell which patient will respond how. and hopefully we will have better abilities to predict response or lack of, and potential risks much better in the future, but we still don't have those tools, in most medical situations.

there is no medication in the world without potential side effects. once you interfere with a certain biological system, you are always interfering with processes that you don't want to interfere with. some times this may be advantageous, and lead to the discovery of a novel treatment approach, but many times not.

therefore every treatment decission (even tylenol) should idealy be based on a joined decission of physician and patient based on a reasonable understanding of the risk benefit ratio involved in this treatment, and proper follow up to asses possible expected or unexpected side-effects, and the timely discontinuation of this treatment if those side-effects alter the risk/benefit ratio. (obviously long-term side effects are harder to asses, but should be taken into consideration).

every medication, including widely used antibiotics comes with a very long list of potential side-effects, and this should not lead to fear of using it, if it is clearly indicated.

as you well know from the Vioxx story, if a certain medication has an unaccaptable side effect profile for its indication, then it is removed from the shelves immadiately.

alice

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