Pregabalin, has anyone had a good experience ... - Pain Concern

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Pregabalin, has anyone had a good experience with this drug? I have just been prescribed this for nerve pain in my legs due to slipped discs

remy profile image
remy
28 Replies

after reading about it on here, I am really worried. Firstly the tiredness, I work 6 days a week and have three children, I cannot afford to be so tired all the time. Secondly weight gain, I have struggled all my life with this. I am in lot of pain and currently taking tramadol. This seems a really dangerous drug to start and also to stop ! Can anyone say anything positive about this ?? Help !

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remy profile image
remy
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28 Replies

I know how scary being tired around children can be. Its not just feeling tired but the fact that you drop off to sleep and you have no idea you have until you wake up hours later. Mine were 6 and 8 at the time.

I traded no meds for family life and use various alternative therapy strategies. I also found a sports physio very helpful in treating my disc problem and related aches and pains. I also do meditation to push the pain into the background. Without my strategies my pain is an 8, I can reduce this to a 3 which is as close to painfree as I can get.

And from reading other peoples stories of pain killers not working and various often serious side effects, I think I have better pain control all round. But everyones pain is different, and responds to things differently.

If you want to use meds, talk to a pharmacist, they tell you exactly how it works and the long term effects on your body. They may be able to suggest something else.

mikewitney profile image
mikewitney

im going to be put on Pregabalin from fentanyl a strong opiate based drug. this makes me sleepy all the time. and with the pain i am in i dont know i would swap..

i manage to hold a job down and stay on fentanyl on a high dosage 125mcg/hr. at first i was asleep for 18 hours a day but once my body adjusted its self, i was able to work and if ur in this much pain its a better option.... dont get me wrong its not a nice life sleeping for no reason at all. with no warning all i have to do still now is sit down and try and watch tv and im off to sleep.... i still cant think first thing in the morning. to tell the truth i do hide a lot of symptoms from my employee.. but i have found a drug witch combats the tired ness. its called modafinil. they seem to give me a boost on the alertness side.. but apart from that in a nut shell all i can say is if u can avoid going on to these drugs , then stay away as its a one way street no nothingness...

Milosmum profile image
Milosmum

Please be extremely careful and think hard before taking this drug , I was prescribed it for back and leg pain due to a failed spinal fusion, and also a screw being put through the nerve in my leg during the operation, the screw cannot be taken out as it would cause more damage so therefor it has to stay . This was all done in 1993 and obviously my legs and spine are deteriorating over time, so I was prescribed pregabalin , After one week of taking it I started gaining weight and feeling unwell , after two weeks I had to call the ambulance out as I had just ballooned and felt so I'll I couldn't do anything, I kept trying to say was it the pregabalin, but the hospital said they didn't think so and after tests for kidneys etc sent me home. After three weeks of being on this drug I had gained three stone. I went back to my gp who wouldn't listen to me when I said it had to be the tablets, I couldn't put three stone on in three weeks unless I sat feeding myself chocolate for the entire time. However he wouldn't have it that it was the tablets, he told me to stop taking them and come back in a week, I did and I'd lost one stone at the end of two more weeks the rest of the gained weight had gone, he then had to admit it was the tablets and said he would have to report it to the medical council. Worse case scenario was had I have carried on taking them my heart wouldn't have been able to take the rapid weight gain and I would have been dead. So PLEASE think long and hard before taking them, in my opinion they shouldn't be on the market. Another thing I use which I have found works well with all my meds is a tens machine they work well and there are no side effects. Good luck and I hope you get some relief soon.

remy profile image
remy in reply to Milosmum

I have a tens machine, but this does not touch the pain on my 'bad' days. There are far more people telling me not to take them. I am sorry you had such a hard time, I hope you have now found some sort of comfort.

SylviaH profile image
SylviaH

I was prescribed Pregabalin to help with severe nerve pain after a failed knee replacement operation. I started on a low dose and then built it up. I was a bit concerned about all the side effects it could have!! First of all it did not work at all on the pain, I also started to have some hallucinations and also I would just drop off at odd times, for instance while doing a row of knitting! But it did not make me feel unwell, actually it did nothing at all and certainly did not relieve the pain at all and I did not gain weight in the end even with a increased dose. I also take morphine so I came off the Pregabalin after a few months as the side effects are worrying and frankly it did not work, saying that, I think it works well for some people, its worth a try I think, you can always come off it quite quickly ( but gradually) and if you trust your doctor/consultant , that helps. But be aware it is a VERY powerful drug.

FunkyMumma profile image
FunkyMumma

My brother-in-law was on Pregabalin for years. He came off it and has started a new life. Don't be peddled mind altering drugs that will turn you into a zombie. Try Accupuncture and anything else first. x x

kebsa profile image
kebsa

i am on quite a few medications including mophine (via a spinal pump these days) clonidine also by pump, amytriptillin and pregabalin.-i was on it for a few yrs but was taken off it for a while as it was not available through our subsidised system here in australia for a while which made it too costlybut once it was accepted on our pbs system so that it was not expensive i went back onto it.

now, i have come across many folks who have decided they do not like this medication, the drowsiness being a amjor issue for some and for other(not many) hallucinations were an issue. I think i must be lucky as the first time i was pt on it was when it was very fist released and i was put straight onto reasonable sized dose of 300mg twice daily and it did not make me anymore drowsy than my other meds- i was on it at that stage for phantom pain following an amputation and it was the first medication that had really come close o covering that at all well! so when i had to stop taking i due to cost i was upset to say the least. it was around then that i found others who had had problems with it especially if they did not start at a lower dose and then build up the dose gradually.

i was only put back on it about 12 months ago and this time it was in the hope that i would help with nerve pain that has occured after i fell and crushed 3 vertabrae leading to nerve impingement and spinal stenosis. this time the doctor at the pain unit decided to start me on a lower dose n build up to the current dose of 300mg twice daily and i really have not had any probems with it. it certainly does not stop all the pain but i helps a good deal witht he nerve pain. when it comes to phantom pain, i go months without many issues these days but i have a neuroma in my stump and if i accidently put even gentle pressure in that region it can trigger the equivalent to being poked repeatedly with a cattle prod! it really makes me yelp! this med tones it down but on odd occcasions i is still rough and then i can get away with an extra dose as a one off with my doctors knowledge and while it takes a while it does settle it. many f the drugs we take can lead to drowsiness and i seem to be lucky that its not a problem for me, i get fatigued but that is more an MS thing unrelated to drugs and not made worse by these either

weight gain is a factor but the weight gain has not been substantial, just nuisance and i figure if i was in uncontrolled pain lack of activity would potentially have the same effect. As long as the gain is modest then i feel its worth the risk and then deal with the issue by modifying diet to allow for it. i am certainly overweight but gained most of my weight when my pain was not controlled well at all so i consider that a bigger risk

my thoughts would be to give it a try but at a small dose with the idea of building it up slowly, when i re started on it i started on 75mg daily, then twice daily and so forth, just expect miracles on the lower doses- if you start it at low dose and do not like the feel its easy to cease

williams38 profile image
williams38

Hi, I was perscribed pregabalin by the pain management team at hospital, it helped me to stop the morphine, and return home!!!! My back pain is now practically non existant, I havent gained weight, I now take 200 mgs, from 300mgs last year. Obviously we all have different reactions, but it certainly helped me Good luck.

vivikin profile image
vivikin

i have been taking pregablin for 3 years with amytriptline and co codamol for nerve pain in my legs I also have struggled with my weight but would also say I have had lots of depression times when I eat badly having said that I started on 100mg a day and now take 400mg a day I am still in pain but don't know how bad it would be if I wasn't on the three drugs I do get a bit sleepy in the day but the worst is in the evenings unless im really concentrating on what Im doing I do just fall asleep but I never drive a car after my evening mix of drugs. going back to the weight issue I did join weight watchers and lost 2 and a half stone whilst still on all pills so I would say try them and see how you go if you don't like them you can always talk to your GP and get them changed but as someone above said don't just stop taking them talk to your GP about how to come off them slowly. everyone reacts differently to different drugs I myself cant take tramadol as it made me suicidal. best of luck.

triciaj profile image
triciaj

Hi Remy, I have been taking pregablin for three years I was started on 150mg then 200mg then 300mg now I take 2x100mg a day. To cut a long story short I was house bound for over a year with taking the pregablin and other med`s I was a zombie because of the med`s but I was in excruciating pain from morning to night, I was beginning to loose the plot. You will have to find your own level with the pregabalin like I have , we all tolerate medication differently but for me it`s a big "YES" to pregabalin good luck Remy Tricia.

remy profile image
remy in reply to triciaj

Thank you, the first positive response. I am 48 and feel 78 ! so I need to find something.

Mavismac profile image
Mavismac

Hello Remy, I am taking Pregabalin 75mg am and 75mg pm with 10mg Amytriptline pm. I started the build up of Pregabalin from November last year ending up with the current dose. I take it for chronic regional pain syndrome resulting from a bunion and toe fusing operation which in itself was successful but whichever nerve went beserk , it tells my brain I'm in pain. and affects my foot and leg. (The doctor who did the bunion op etc., says I shouldn't be in pain, mmm) I was getting a feeling of heat up my leg when it was normal to the touch. Pain in the bunion area and redness of the foot and lower leg. Anyway, I haven't had many of the severe symptoms some people seem to have after taking Pregabalin. Yes I have put a stone on, my pain consultant tells me it is fluid retention. Yes I do feel tired in the morning more than any other time and find it hard to get up but am fine once I do come round! I do find I have to take the drugs at a regular time as I feel the heat back into my leg but not nearly as much as before so the 'heat' does seem to be easing off. I do ache more than I used to, I haven't seen anyone else mention that, and I do find sometimes I can't find my words and my memory is dreadful but then it always has been! But all in all I'll put up with this if it means my crps or regional pain syndrome some people call it, doesn't get worse which in the normal course of events, it should/would. I think, like some before me have said, try it. It seems to vary an enormous amount in its effect on people. I would also say if you do go ahead with it, to try and have an open mind, don't panic - the mind is a wonderful thing. The trouble seems to be that when it's pain, nerve pain or any other pain, the drugs involved are strong and everything has side effects. It's working out what you can cope with and if you feel you can 'take the risk' to make life bearable when pain is involved. Good luck. Best wishes Mavis

remy profile image
remy in reply to Mavismac

Thank you Mavis, you're right I am panicking and like everyone has said they obviously have such different effects on different people. When I have a very bad day I will try anything, but when I start to feel a bit better I panic at the amount of drugs I am on, I need to find something I can cope with.

Kat3 profile image
Kat3

I've been on Pregabalin for over a year now. It doesn't touch my back pain (from a failed back operation) but it does help with my leg pain. I don't have any noticeable side effects, luckily. I am on a lot of other meds too (Fentanyl, Naproxen, Mirtazapine, Cipralax) however, I only take 75mg of Pregabalin, twice a day, which I'm meant to put up to 100mg soon. It affects everyone differently, so it's worth a try. If you don't like it, there are some similar ones you can try, such as Gabapentin.

Good luck,

Kat

remy profile image
remy in reply to Kat3

I have never heard of the drugs you have listed, so obviously I must be at the beginning of my journey with pain ! I have tried Gabapentin but they made me feel really ill, I only lasted a week on them but they did help. I will just have to keep trying things until I get something that suits me, thanks.

sharelle profile image
sharelle

Everybody will react differently to this drug, weight gain is a big problem, as is feeling spaced out. I was prescribed them at the lowest dose and when I got to two a day the side effects started, so I cut it straight down and stopped. Same happened with the older Gabapentin. It is a suck it and see drug, but there are alternatives to try first if you already haven't tried them, for example amitryptiline as well as you morphines, codeines, etc. Alternatives therapies are worth considering, repetitive acupuncture can be good for nerve pain but I swear by a TENS machine. No side effects or chemicals. Good luck x

sulimbi profile image
sulimbi

hi,i have been on pregabalin,for a long time with no problems,when i get too used to it so that it stops working,i switch to gabapentin,again with no problem,it takes a while to get used to these drugs but as far as i'm concerned i'm lucky that they make a drug that can help me.and i can put up with a few side affects

remy profile image
remy in reply to sulimbi

I suppose it's a case of weighing up which is worst, the pain or the side effects. Do the Gabapentin not make you feel ill ? I found these brilliant for the first week but then I became really sick on them when I had to up the dose.

sulimbi profile image
sulimbi in reply to remy

give yourself time,remember it took 48 years to get to the state you are in now.the nausea will go. these are powerful drugs,you take them by mouth,so,the first thing they are going to affect is your stomach.i use 'actimel' 2 each day.or you can have 'bio yogurts' again 2 a day.they both work very well and protect your stomach,not only for pregabalin and gabapentin,but also from any other drugs you have to take.although it doesn't seem possible at the moment.and that you are in a long dark tunnel,you will get through this and come out the other side.happy and relatively pain free

remy profile image
remy in reply to sulimbi

I hope so, constant pain is bound to get me down, I will persevere. thank you.

win1lin profile image
win1lin

Hi, I've been on pregabalin for years! It was okay until doctor increased the dose to two 75mg twice a day. Now I just want to sleep, I can't do the simple jobs around the home, I don't even want to shower!

When I was on 50mg three times a day I took them every 6hrs as this worked for me as after last one at 6pm, by 9pm I was ready for bed. But I was on co-codamol which everything worked.

Now doc as changed my doseage and put me on 50mg tramadol two to be taken times a day, I've become a zombie and my doc just doesn't believe me when I tell em I'm in pain all day and just want to sleep! All I want is to go back on co-codamol and pregabalin 50mg 3 times a day where I had the pain under control.

So if I were you try if you must but find your correct dosage and stick to it, Take care and all the best with that pain x ( try other ways some do help ) goodluck x

I started pregabalin 10 days ago for Fibro and nerve pain from a damaged/pinched nerve in my neck, so far I'm not noticing a huge difference in pain relief but am only on a low dose of 50mg at night and 25mg in the morning, I also take an anti-inflammatory medication if I have a bad day and also co-codamol when needed. At end of the month I'm supposed to drop the Ami and up the pregabalin to 75mg at night so maybe it will work better then. on the plus side I haven't noticed any side effects yet. Before I started on the pregabalin I was on 50mg of Ami at night which I believe gave me nightmares they have eased since I dropped the dose.

I guess everyone is different and we tolerate meds differently too. Today I had a bad flare of my Fibro and took all the meds prescribed to me none of them really helped much just made it a little more bearable. I know two people who are on pregabalin a few years, one takes only 25mg at night and that is enough for her the other needs 300mg a day and still gets bad days so I guess it really does depend on the person...

remy profile image
remy in reply to

Thanks for replying, I have decided not to go on them at the minute, I am waiting to see a specialist in pain management. I will try and cope as long as I can, it's frightening most of my friends won't even take headache tablets ! I feel like a druggy but it helps knowing other people are the same.

remy profile image
remy

can I just say thank you to everyone who has replied, I have never been on this before and I have found it really useful and also I don't feel as 'alone' as I did before, I have realized a lot of people suffer like me.

deb25426 profile image
deb25426 in reply to remy

Hi remy, I have concerns like you, I have been taking them since sat 22nd June... Day 5 I felt really bloated and I do today.. I have decided to stop taking them as I am not sleeping since taking them I am having troubled sleep..groaning and waking myself up!!! But I am always having problems with tablets so it could be just me... But after reading all this on here I'm taking no more!!!!!

I would add caution indeed, for this drug along with Gabapentin has the affect of killing off the nerve pain and you then get no signals when to stop as pain is what alerts you to stop .My first really scary episode is when after being on them for a while, and i'm so bloody minded about walking that I push myself and then your legs (mine did) turned to rubber and still do but I've learnt to do it slowly and with care, but in the beginning and not knowing where it was coming from I think to much pressure on the nerves made them turn to rubber, and it was a shock as it came out of the blue, and although I can't say for definite that it was Pregabalin, or Gabapentin, all I know that it first happened when I first took them .

I would not in all honesty recommend them for long term ,I now only use them (and it's not doctors advice) when I am going out or if I'm not using my chair as I find the build up after taking them for more than a few days in a row makes for problems with my kidneys liver and stomach, (but I do have other health issues) but if I stop them rest and use my chair then the Kidney Liver and stomach get better, or return to what they were .

But only you know just what you want to do ; but it's a vicious circle of getting fat, ending up in a chair more and more as the weight piles on to your body and the pressure on your frame get's worse, but All the advice you will ever need is above in these post's.

Please think carefully before start on these pills as the problems are very horrible to live with especially long term, so best wishes for your decision whatever you decide

remy profile image
remy in reply to

than.k you, I am amazed so many people have replied, I don't feel as alone as I did, people you live with just don't understand. I am seeing my doctor again tomorrow hopefully I can sort something

kiki01 profile image
kiki01

I had a nightmare with this drug. Shortly after taking it I began to have falls resulting in a broken wrist and leg. (I have osteosrthritis) I was never warned of side effects. Every time I took them I would feel faint and off balance. I stopped taking them and have never fell since.

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