Lycira experiences please - Should I take it or not?
 

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

Welcome Mel2014. :Wave-Hello:

Someone will be along to help.

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

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

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.

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

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

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 :D), 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.

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.

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.

I decided to give lyrica another try, I took 150 mg this morning, it was like stuffing my head with cotton, hopefully it will stabalize at some point. Still hasn't lessened the pain.

the lightening shocks in the legs are the worse! Luckily I only get them a couple times a week... I have never found anything that takes away the burning pain, for me opiates have never helped. It makes it so you don't really care about the pain, but it is still there.

I was one of those people whom Lyrica was a disaster, had bad side effects, brain fog , depression and no relief. Had a bad time in withdrawl. but would try it again , just don't stay on it too long if it doesn't help.

My experience with Lyrica was one of torment and despair. I was told that it was not effective for me because I was not taking enough and to keep increasing the dose. I did and eventually my eyeballs exploded (err, well, it felt like it anyway) so I had to discontinue it and I am glad I did.

That said, I wouldn't advise against trying it as it does work for some.

I am off Lyrica, as it did nothing for the pain, and only gave me side effects, blurred vision and brain fog. I went up to 450mg a day, and no reduction in pain. I had the same effect with gabapentin.

Hi Folks,
Thanks for all your replies. A lot of you have experienced or are experiencing the side effects that I am afraid of.

I have however said to my doctors that I will try Lyrica starting September 8th. I am very, very worried about taking it but I feel I have to try it even though I'd rather not. On the other hand I won't know how it is until I try.

If anyone has any tips, I'd appreciate hearing them.
Cheers Mel

I took Lyrica for over 10 years for nerve pain from brain tumour surgery. At the time I started taking it I was desperate and wanted to end it all. So I thank the makers of this drug for helping me to cope as it did help me with my pain. However I found long term I started to have side effects that were just unacceptable and I wanted to decrease & or stop it. This is when I struck major problems. The pain of withdrawal far out weighed the benefit of taking it. But I feel after surviving withdrawal I can now handle living with the nerve pain I was trying to escape in the first place!

Hi Aussiedebbie,
I suffer from the same type of awful symptoms you do. I take 300 mgs of Lyrica 150 twice a day. I also find the Lyrica does not help with the stinging burning pain. I was up to 350 mgs but I have weaned down to 300 mgs. I take Tramadol approx 75 mgs almost everyday but it doesnt help for that kind of pain either. I am beside myself with this pain caused by idiopathic small fiber neuropathy. I started taking Trileptal 150 2xday while Im weaning off of Lyrica..dont think its helping.. I am struggling to find a med-combo that will help with this buzzing, stabbing burning pain I get on my legs, feet, arms and hands, among other places like torso ad back :(
Do you have pain all over? The Lyrica S/E are tolerable, no weight gain, I've been taking Lyrica for 19 mos. Do you take anything for your pain now that you are off the the lyrica, Please let me know how your doing with your burning pain and what your taking now. Thanks

Hi Marie, your tramadol dose is very low , 75mg wouldn't touch strong burning pain. Im on 400mg and after years of good pain control the burning has returned so will have to find a new combo myself

Hi Marie,

Thank you for asking how I'm doing. :). Nice to meet you. We do seem to share similar experience. However, my pain has always only been in the feet only. I'm praying it stays that way, can't imagine this pain all over. I read here how others are suffering much, much worse than me, and I often cry just imagining it, and out of empathy for them.

Like you, I didn't gain weight, thank goodness!

I'm still taking Lyrica every day, I've never tried stopping. I take the same as you, 150mg's twice daily. It does nothing for the burning and stinging, but it totally stops the electric shock type pain. I've yet to be diagnosed. Have had all the tests, nerve studies, MRI, etc. but they can't seem to work out what's wrong.

I take more Tramadol than you, usually 150mg's twice daily, more/double on bad days, or on special occasions when I know I'll be walking, or standing, a bit.

I'm so sorry to hear you are suffering so badly with little relief. Perhaps try double or more Tramadol and see if that helps. As Jon mentioned, it's more like the pain still exists but you don't care. I think that's how I experience it, for the pain never leaves, it just becomes more tolerable.

I also take B12, Alpha Lipoic Acid, C, E, among others. Honestly don't know if all those are helping, but they say nerves take ages to repair so I'll stick with it.

This year I decided to try a gluten-free diet, which has fixed a few of my other problems (like dry eyes) but it doesn't seem to have had any effect on the pain levels. However, it's only been 6 months, so I'll keep at it.

I'm sorry that I can't help or advise you about pain relief while coming off Lyrica because I've not stopped taking it. To be honest, from the stories I read here I'm petrified of trying to go off it, and fear the day my Doctor suggests I try.

I truly hope you and your Doctors can find the best pain medications for you. Keep in mind that you most likely won't get 100% relief. Expect to find a level of comfort whereby you can function adequately, and the pain is bare able. Any more than that is bonus. I truly hope you do better.

Warm hugs

I thought I would add on Lyrica experience to this thread-

I was recently encouraged to go back to my 300mgs a day, though 100 three times a day as opposed to the 150 twice a day in the hopes there will be better coverage. I have had minimal side effects (occassional brain fog- gah, what was that word I was looking for?) While seeing an almost 100% drop in burning feet and electric shocks around my lower calf/ankle area.

I'm better off for taking it. I am lucky that the benefits outweigh the risks. Early on, while starting the medication, the brain fog was more pronounced. All in all I am happy it works as well for me as it does. Gabapentin didn't work well at all for me.

It is easy to say "give it a go" from my couch. Please consider any reasonable method to achieve some relief. I am still in 'no man's land' as far as I am concerned. Until everything is sorted out proper Lyrica is in my life with tramadol to help with joint/muscle/tendon pain and the "supplement/med de jour to try and get some sleep.

My best,

Jon

Pros- it actually does work to some extent for nerve pain
- you know you need this drug when you put up with the side effects and for some that can be life saving or buy you time until you can learn alternative coping mechanisms
Cons- long term it messes with just about all of your body and makes coming off it very hard.
I believe the drug company has made the ultimate drug from their point of view. It does have benefit where nothing else works. Once you are on it, you believe you cannot live without it. The long term side effects are not good but it is very difficult to withdraw from in the long term.
So weigh up your life expectations. At the time I started this drug I wasn't expected to live very long so withdrawal wasn't an issue. The universe has other plans and I have been surviving the nerve damage from a spinal tumour for over 16 years. I now think long term and know my life will be better without this drug. I have learnt to cope.

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Hi AussieDebbie,

I also have some pain which I think is nerve pain, amongst others, in my heels. I started taking Lyrica, first 25mg a day then 50mg a day, as well as 50mg Tramadol a day. I didn't think the Lyrica helped much (after a month), so have started decreasing it in order to go off it.

May I ask what dosages you are taking?

P.S I'm an Aussie too, from Melbourne

Joanne

I took 75mg Lyrica with 400mg Neurontin (Gabapentin) three times a day for about 10 years. Before Lyrica came to Australia I took 800mg Gabapentin four times a day for about 5 years. So I suppose my problems are from high doses over a long period of time. McKenzie

Hi Joanne

All up I take 300mg's Lyrica a day (150 morning & 150 night time).

I also take 100mg's Tramadol in the morning, and another 50mg's at night.

It sounds like you may not have been taking enough Lyrica to have much of an effect. My Doctor started me on smaller doses, but within a few weeks I was taking 150mg's twice daily. From memory, I started to feel noticeable pain relief at about 100mg's, and about week two into taking it.

However, if you can live without Lyrica then definitely so so. It's something I dread ever having to come off.

Best of luck with your diagnosis. I'm up in Brisbane. Nice to meet you. :). It helps somehow knowing there are others closer to home here to talk to.

I was prescribed Lyrica 150mg twice a day. My pharmacist warned me about the drug and said to start on half the dose, stabilize on that and only to increase if I had to. As I found it was masking symptoms enough I stayed on 75mg twice a day. It did take me most of the first month to establish balance and the ability to think clearly. I have now been on it all this year.

Reading up this drug does have side effects but I have not had the weight gain and am not noticing side effects.
I am one of those people who take medication once it's to late (Even panadol). My GP knows this about me.
I missed my does the other morning and by midday was not coping so take it then.

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Hi AussieDebbie,
Thanks for your reply.
I normally only take 50mg Tramadol in the evening as more constipates me and I have to watch that closely as I had an **** fissure 2 years ago which flared up again 2 months ago. I took 2 Tramadols yesterday and had a bad time this morning in the toilet. I am already using a stool softener (lactulose).
Do you know of any pain medication that is still effective but constipates less?
Joanne

Hi Joanne,

I'm fairly new to pain relief myself. Started taking Lyrica and Tramadol about a year ago, and haven't been on any other pain meds.

Your mentioning constipation got my attention. I've never had it in my life until this year. I have been blaming Iron supplements but perhaps it's the Tramadol! It's only a few times a month, and Tramadol helps so much I'm willing to let it be. Thanks for bringing the drug connection to my attention. :)

Hopefully some others here who have tried various pain medications can give us some insights.

Debbie,

ALL opioid pain medications—including tramadol—cause constipation. Many other kinds of medication used for pain—e.g. antiseizure, antidepressant meds, etc.—have the potential to cause constipation.

When in question, consult the prescription insert for side effects, or goggle: side effects [medication name] ;)

Doc

Hi Joanne,

In addition to the stool softener, have you tried consuming prunes, prune juice or taking a magnesium (not the oxide kind) supplement? If not, they might help.

Lyrical made me retain fluid bad! This is one of the side effects!

Welcome Frankallen. :Tip-Hat:

I couldn't take Neurontin because it made me suicidal. Because Lyrica is related my doctor wouldn't give it to me.

I take Ultram for the nerve pain. It mutes it.

When I first started the Ultram (Tramadol) constipation was an issue. I've been on it for 5 or 6 years now and that's never an issue anymore. If you take it regularly I think you're better off from that perspective. Increase fluid and fiber intake at first. It helps. Thinking back, trying to remember, it seems it was just about a month of regular use when the constipation eased.

For me, Ultram was a life saver. It mutes the the shooting - stabbing pain. Most of the burning too.

ETA: I had forgotten another side effect that wears off over time: The nausea. Don't take it on an empty stomach if that's a problem for you. It doesn't do that to me anymore.

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Hi beatle,

Yes, I eat prunes too. I have always been prone to constipation and had a fissure removed 2 years ago. Then 2 months ago when my pain started getting bad, I had a bout of diarrhoea which set off the fissure pain again. So I always have to tread a very fine line so that I don't get either constipated or diarrhoea. Sorry for all the ugly details! It is just another type of pain that I have to struggle with and makes the process of finding medication for the other pain all the more difficult. Thanks for your suggestion.

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Hi Doc,

I have heard that the antidepressants and anti seizure medications can also cause constipation - do you know if they do so to a lesser degree that the opiates like Tramadol?

Thanks Doc. :)

Looks like I'm stuck with bad plumbing, as going off pain relief is not an option for me.

This natural remedy has been around for years.
http://neurotalk.psychcentral.com/post741073-26.html

Or Search/Goggle: Yakima Fruit Paste (Same thing)

Doc

RLA killed the burning pain for me; B5 (Pantothenic Acid) took care of the needle jabs/electric shocks. Foot cramps are still a problem, albeit not as much—same with other flavors of PN pain.

Doc

IME, yes, BUT (BIG BUT) everyone is different, and the constipation (IMO) is NOTHING compared to the other side effects of antidepressants & antiseizures. Antidepressants & antiseizures can also (believe it or don't) be ultimately (all things considered) more difficult to get off of than opioids if/when addiction is not the issue.

Doc