Hi everyone,
The pain I have been in hasn't seemed to respond to the IVIG. I emailed my rheumo yesterday. He takes can of my medication and often corresponds with my neuro.

He would like me to try one of the neuropathy meds again. He suggested neurotin or cymbalta. If you remember I had such a hard time withdrawing from the cymbalta so I don't want to try that again.

For those of you who have or are taking neurotin do you experience a lot of side effects. I tried it once before but couldn't get to a dose that worked. It made me out of it pretty much. I was working then so I couldn't stay on it.

I can't work anymore so I'm thinking of trying it. If I have to put up with the side effects for a little while until my body gets use to it I can rest etc. now.

I'm always so afraid of medications. I get so anxious about trying anything new.

I'd appreciate hearing any advice or info you can give me.

Neurontin is one of those meds that takes time and lots of patience due to it's side-effects. You have to slowly increase the dose until you get to a workable level, yet each time you increase, you will likely experience a little more of the 'zombie effect', as I call it.

But once you get to an appropriate dose, the side-effects do wear off for most. If you're not working, you might have better luck in being able to tolerate it during this period.

Just pay attention at each dose to see if you get even slight improvement, so you know if it is helping. If yes, then move up to the next dose to see if you get more benefit, etc. The doctor will start you off low and give you some room to increase a little on your own or call for instructions to up the dose.

I've been doing some research under the search site here. It looks like the reviews on neurotin are mixed. I did come upon a discussion on Elavil. I did take that when I first got sick 6 years ago also. I'm not sure if it was in combo with neurotin but I was given something with it.

I'm thinking of suggesting this to my doctor. From what I have read it seems to work. It also has the added benefit of aiding in sleep. Right now I really need that. My experience with medications has not been good. I want to try something that has been around along time. No surprises in long term use.

Does anyone have experience with Elavil or Neurotin. I'd appreciate any input.
Hopeful

I'm up to 2400 a day. I see my pain dr Thursday and I'm going to ask him the best way to quit taking. I've been on it for a couple of years and whenever I say it doesn't work, they up the dosage.
Personally, I just get the side effects without the relief. The side effects are grogginess and a general tired, almost lazy feeling. I think everyone on this board has tried it.
It must work for someone.

Oops. My post was about Neurontin/Gabbapentin.

Gabapentin does help me. It cuts down on the burning and electrical zapping. I have tried cutting back and notice a difference, also if I miss a dose. It does help me sleep. I have not had many side effects- no weight gain or mental fuzziness, but I do have blurred vision which may be due in part to the medication. I have been on it at 1800mg per day for five years. I am recently having trouble - forgetting things, losing track of thoughts, finding the right word, but that may be menopause as much as anything else.

It seems as if most people here have more trouble with it than I have. I would give it a try and if it doesn't seem to be helping once you reach the 1800 mg mark, slowly go off of it. You will know whether it is worth it for you in short order.

There must be a medication or combination out there that will give you relief and preserve some quality of life for you. I hope that your doctors understand what you are going through and will make this a priority.

I tried both Gabapentin and Lyrica, neither did anything for the burning pain in my hands and feet, and cuased blurred vision, memory loss and just fog. Today my Rheumy put me on Cybralta, hopefully this will work with fewer sideffects. I realize that there could be complications, but not many choices are available.
I read about one study that the drug company did, where Lyrica scored about even with the placebo, I told my Neuologist to just give me the sugar pills, as they have fewer sideffects! The drug company quickly covered up the findings and did the study again, and surprise, they passed the second time... My Rheumy told me (tounge in cheek) that that is why Lyrica didn't work for me, as I read this study saying it didn't work...

Thanks for all your answers. I emailed my rheumo today and asked him if he thought Elavil might worked for my neuropathy and fibro. I told him if he didn't think so I would try the neurotin. I guess with all this pain I'm desperate now.

Thanks again!

After having declined many doctors' suggestions to take gabapentin for SFN; when I started having muscle pains that disturbed my sleep, I requested a trial of amitriptyline (Elavil). A lot of the medical literature that I've seen lists tricyclic antidepressants as well as gabapentin as a first choice drug for PN pain. I had taken it years ago for chronic regional pain syndrome and it was effective for that. I can say that the amitriptyline helps me get to sleep and sleep through the pain better than without it. The pain is still bothersome but I'm only currently up to 40 mg. (at bedtime); my doctor says I can go up to 70 mg. For CRPS I took 3 doses of 25 mg per day and at that level the side effects were a very dry mouth, urinary hesitancy, and hand tremors. But well worth it for relief of the pain. Good luck!

I've been taking Gralise (1,200mg) which is the time release Nuerotin. I take it once a day before bed, so I guess I sleep through the zombie effect. On those "other" days take a 3 or 400mg nuerotin later in the day, but thats not very often thankfully.

I've been using it for over a year and I'm satisfied.