[Mel2014]

Hi Folks,
I have recently been diagnosed with Anti-MAG Polyneuropathy which is a rare hereditory autoimmune form of Peripheral Neuropathy. I went to see my Neurologist today and she wants me to take Lycira to lessen my symptoms. I have said I will try them but that I am not very keen on using Medication especially as I've read that the side-effects can be very bad.

My symptoms at the moment are mostly vibrating/tingling sensations in my feet, legs and hands but apart from occasional toe cramps I don't suffer from a lot of pain as it seems so many other people do. Just last week my feet started to feel a tingling cold at night but my feet were warm to the touch.

Today I've been reading about Lycira and there seems to be quite a few side effects and I am shocked reading peoples withdrawal experiences when they come off it. I have to say it frightens me and now I question if I should take it, especially as I'm not in great amounts of pain, just bad discomfort.

Can people please tell me their experiences with Lycira both pros and cons. I don't start the treatment till mid August so I still have time to make up my mind.
Thanks in advance for any help
Cheers Mel

[Kitt]

Welcome Mel2014.

Someone will be along to help.

[hopeful]

Welcome Mel. I tried Lyrica twice and couldn't stay on it. I personally became severely depressed both times after only two weeks of taking it.

I believe there are others here that have success with it.
Hopeful

[anon1028]

I cook lyrica. No side effects. It didn't help with my post stroke pain but it helped with my North happy from another issue. I came off it i had no problem

[Jon_sparky]

Hi,
My Neurologist put me on Lyrica 75mg twice a day, my Rheumy doubled the dose when I told her it was not helping. When I upped it to the 300mg- 150mg twice a day, I noticed that I started having brain fog and blurred vision, so I stopped it a week ago. I may try it again, but it didn't help the burning pain much. I had no other side effects, besides the fog and blur.
I would say it is worth a try, not many other choices out there.
Hope this helps.

[Mel2014]

Hi Everyone,
Thanks so much for your replies, everyones experience helps me.

I've not had good experiences from taking medication in the past. I have just recently stopped taking blood thinners and I am amazed at how much better I feel in a general sense. Not great, but more like my old self. Hence I'm not keen on starting new medication which has dubious side effects and I'm just scared of feeling generally unwell again.

Please keep the experiences coming, I feel less alone as I don't have anyone at home to talk to.
Cheers Mel

[KnowNothingJon]

I've taken Lyrica for over a year. I was concerned about side effects as well, but gave it an opportunity because the aching/throbbing/pain/burning was becoming troublesome to the point I figured it was wortha try.

I found some relief at 150 2x a day. Some fogginess while getting used to it, butnot enough to not brave it out, which I did. I was concerned about weight gain, though found out for me it wasn't an issue. I wondered if for most people weight gain was due to- 1. Eating more due to feeling better or 2. Side effect of meds- feedbag mode minus any thinking about it at all.

Of course it could just be how some peoples bodies react, the weight gain.

I did cut down to half the amount for awhile as the relief was lessening. My doctor assured me once you find a level there should be no diminishing returns. Well, that to me suggests it is getting worse. I am at 3x 75 now, though really am unsure about it.

Yes, I like relief. No, I do not like the idea of not noticing small increases in symptoms until they get larger.

Good luck on your decision.

Jon

[Hockey]

I am not familiar with the alternative drugs available to treat your condition.

I was given Lyrica to lessen nerve pain following an MVA that left me with, among other things, an incomplete spinal cord injury and TBI.

For me, Lyrica was a complete disaster. It did next to nothing for my pain and withdrawal was a nightmare. I did better on the old standard, Tergretol. I wish my neurologist had started with that drug. It's been around for donkey's years, so all its long term side effects are known, and available as a generic, it's much, much cheaper.

You're doing the right thing by researching your drugs, not just swallowing them unquestioningly. Consult some authoritative sources (ie, not me ), ask your doctor why Lyrica, rather than something else, weigh the pros and cons, then make the decision you feel is right for you.

The ideal would be not having to take pharmaceuticals. However, the reality is that, without some form of medication, many here would be rendered completely incapacitated by our pain.

Good luck and welcome to NT.

[v5118lKftfk]

Lyrica worked for the pain but did strange things to me.

I try to stay off it if I can.

However, when I took it I produced the most incredibly charged artwork.

[AussieDebbie]

I've been on Lyrica now for almost a year. When I first started taking it I experienced a constant headache. Not quite a migraine, but annoying. My Doctor assured me that it should go away with time and to hang in there a while longer, which I did. About 2 weeks into taking it, the headaches went away.

I now experience brain fog most of the time. I have good and bad days, but overall it's not too bad. I also get some blurred vision, sometimes, but it doesn't worry me as I know it's not permanent and just an effect from Lyrica.

The positives for me outweigh the negatives. Lyrica doesn't tend to get rid of the burning pain so much, or the stinging, for that I take Tramadol which does the trick quite well.

What Lyrica does for me is take away, completely, the electric shock type pain, the shooting pain. It helped a little (perhaps 40%) with the other pain, burning etc.

So for me, Lyrica does the shooting, electric pain. Tramadol takes care of the rest. Together they do a good job of keeping my pain bareable, and I'm able to function.

Hope that's of some help. But, as always, it's an individual journey. I'd encourage you to stick it out for at least 3 weeks before giving up on it, if you try it. Once the initial symptoms start to disappear the amount of pain relief you can expect will be evident.