Pregabalin ( Lyrica ) What A Worry

Pregabalin ( Lyrica ) What A Worry

18 months ago when desperate to find something to stop the worst pain I had ever incurred in my life after trying several other drugs I was given Pregabilin ( Lyrica )

At the time I was exstatic that something was their to help that crushing pain ,but little did I realise the inpact this so called wonder drug would have on my life .

Ok so you read the information sheet with the tablets and it says ,these may be some of the side effects incurred by taking this medication .

Firstly after just a week it was obvious it had started to play havoc with my daily toilet motions and this only got worse over the coming weeks . Also the next thing that struck me was just how tired and drowsy I was trying to do my daily tasks and work . At one point it knocked me out so bad I fell asleep on a bus twice and missed my stop and ended up miles from wear I needed to get off for my stop ,this happened on two occasions . But overall the biggest thing that has hit me was the weight gain ,and that has amounted to nearly 3 stone in just over a year .

Im sure many on this site have been given this drug and found the same problems I have ,but frankly like the saying goes I feel up the creek without a paddle and don't know wear to go with it all .

For several months now ive been taking 2x200mg a day 200mg in the morning and the same at night and after realising the problems I decided to see if I could get by on less and tried cutting the dosage to just 200mg daily . I had found this hell because once the dosage of the drug works its way from your system as a constant supply wich overlaps ,I started to feel really terrible with funny bouts in the morning and felt really jumpy and skittish and of course their was the enevitable periods wear the pain started to cme back in the lower jaw and chin area . Also from being not able to pass my motions daily at the toilet it was a the opposite with dioreah on a daily basis .

I tried this dropin the dosage for a couple of weeks but in the end I had to go back up because of the excruciating pain I was suffering .

Im sure many more on this site will have been in the same boat as myself .

Please shear your own stories here about Pregabalin and what were the PROS & CONS for you with taking this drug

Thanks so much

Tina .

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36 Replies

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  • not every medication will suit everyone, some people use one med with no side-effects and yet others cannot take it.

  • Hi pinkbutterfly1000

    I sincerely hope that you are feeling as well as you possibly can be today? I have pasted you a link below to another post relating to Pregabalin, I hope that you find it interesting.

    healthunlocked.com/fibroact...

    I have read so many posts from members who have such varied and unrelated stories to Pregabalin, and I think it is as hamble99b says, that we are all unique individuals and therefore we all react differently to both our medications and our illnesses. I think if there is just one major factor that has cropped up on a regular basis with this drug, it is that many users put on weight to start with?

    I genuinely hope that you find the answers that you are looking for?

    All my hopes and dreams for you

    Ken x

  • Hi Ken

    Thanks for your post and link ,its been interesting to read the comments of others on Pregablin

    Thanks

    Tina

  • Hi Pinkbutterfly,

    I am one of the many thousands of pregabalin users. It has helped me regulate the pain more than any other medication, so its benefits out way any deficits. When pain is the monster we really do not mind gaining a little weight which can be rectified later. One step at a time we say sort your pain then move on to recovering your spirit.

    I think Ken the Author has given you web addresses so do read them , nothing to loose so much to gain. We all need to research aspects of fibro life in order to address the problems. I see that old related items have appeared below have a look we have had good conversations on this topic before.

    Take care and keep smiling

    Gins

  • I agree with you gins reading the old posts is a good suggestion my friend :D

  • I've just been given pregabaline too 150mg a day one in the morning and one at night I'm really dizzy and keep forgetting things I even got in the bath with my top still on! I'm really tired too keep falling asleep during the day something I never do I've only been taking this drug for 2 weeks and I've put 4 pound on I've got to see my doc in 2 weeks time I'm coming off it it's not helping with my pain anyway nothing is touching it I've tried lots of tablets to no avail I'm going to pain clinic soon when I get an appointment so hopefully they can help me hugs paula x

  • Hi Paula

    Thanks for your reply

    Im sure the effects of this drug are hitting you because you've just recently started taking it ,your system learns to tolerate it better . The dosage your taking is relatively small to be honest and some people take 600mg or more a day . It interesting to note that you have put on 4 pounds in such a short time only two weeks . Lets face it not every drug suits every cituation and as you didant mention wear the pain was its hard to comment .

    My own pain is down to nerve pain in the lower jaw and teeth and has not really been diagnosed as anything specific ,as sometimes things seem to be all too complicated to get a definite prognosis .

    I wish you well with the pain clinic and hope you find some solution their .

    Hugs

    Tina

  • I've had a similar pain and it was diagnosed as trigeminal neuralgia doc gave me tegretol which eventually worked but when I took it with pregabalin I ended up in hospital so take care. Good luck x

  • that's just how I felt on them.

  • Hi

    I take 100mg morning and afternoon and 50 at bedtime. I havnt gained weight thank god but it has changed my life so much. If I'm careful not to overdo it I can now lead a relatively normal life. I know I'm lucky not to react to the amount of drugs I take.

    Take care

    Lesley

  • Hi Lesley

    Im glad you've gotten benefit from the Pregabalin and can only assume that because your taking a smallish dose the weight thing hasent happened with you ,it appears to kick in bigtime after a certain dosage .

    Wishing you all the best

    Tina

  • Thanks for replying pinkbutterfly I've got osteoarthritis and awaiting a knee replacement I've got no cartailage in my knee and I've now had bone on bone for 20 years now so as you can imagine I'm in serious pain all the time perhaps I ought to keep on with pregabaline then as I've only been taking them for 2 weeks and see how it goes thanks again x

  • Hi Paula

    I would give it a chance with the pregabalin,its early days for you . Im sorry to hear about your problem ,must be terrible to cope with . Pregabalin works as a neuropathic pain killer and blocks signals to and from the brain ,and as pain killers go in the right dosage its usually pretty effective on a lot of people if they can take the side effects that do disapate after a while . But like what has been said not every drug suits everybody and diferant people tolerate drugs diferantly

    Hope you knee replacement goes well ,my mum had a hip replacements about 18 months ago

    Hugs

    Tina

  • Pregabilin nearly killed me, my g. P said he had never seen anyone having such bad withdrawal from a med as I did, he said he only person he ever saw this bad was someone who was having withdrawal from heroin!! Even after being weaned off gradually I still had side effects three months later..

  • P.s but do remember not everyone will have these effects, some people by chance it will suit , that is the trouble if every person was the same then we could say "this med does /doesn't work but unfortunately we are all just nhs guinea-pigs!!

    (Squeak,squeak!!!)

  • I had a terrinle time with pregablin didnt get on with it at all. I went onto fentanyl patches. Problem with all these meds is side effects and withdrawl. Im a recovering alcoholic and drug addict 19yrs clean and coming off duloxitine - the wonder drug for fibro- was worse than heroin. I supplement my pescribed drugs with as many vits and minerals and heat and ice packs on my major flare points. My bowl is wrecked, i can go up to 3 weeks- i recently saw a NHS specialist who told me i just had to live with it. Over the years ive researched treatments ive found that some work for some people with no problems, and others cannot tolerate the same med. i find that interesting- how can that be. I know certainly everything you have said about pregablin seems to be other peoples experiences.

    I now take (along with the vits and minerals) zyban argomelatine amitriptayline and fentanyl and after endless arguments with doctors got finally diagnosed with hypothyroidism. Its allowed me to go back to work part time and im a full time mum of a 15 yr old boy= nightmare, but this does not stop the flares. The only common theme is the weather. Aplogies for typos no autocorrect! Good luck and research vitamins.

  • Hi HB 1968

    Thanks for your input on this subject ,and you made some interesting points . I suppose its the luck of the draw really ,if you see somebody good ,they might help ,if you see somebody with the wrong attitude it can be hopeless .

    Thanks again

    Tina

  • Hi I haven't taken Pregabalin but I have such horrible side effects and also paradoxical effects toalmost all medication that I now manage without any medication whatsoever. I used to have unbearable face pain and headache on the left side, but I started to use a mouth frame - well, I have 2, made by a dentist in Bristol who trained in face pain in USA. It was initially expensive but over the years I have worn them they have more than paid for themselves, the small one that I wear in the daytime, if I have the start of pain I just put it in and within 15-20 minutes I am painfree. I also have lots of other techniques to deal with pain elsewhere. I also take activated charcoal for diarrhoea and other gut problems such as flatulence, its worth a try to see if it works, free of side effects, if you google activated charcoal on the internet there is one UK company where they are relatively cheap. I think coming off these medications is really difficult and you might need some special help whilst you are coming off them, but I am sure you can if you persevere and take it slowly; it took me 3 months to come off Clonazepam. ps I am going to a physiotherapist who is a headache specialist this afternoon and I am hoping she can help - she uses a technique called Dean Watson and apparently 90% of people with headache improve at least 80% - so fingers crossed. Love x

  • Hi Judith

    Thanks for your reply to my post and thread .

    I suppose the mouth frame helped you a lot and ive heard of people using mouth pieces before for things Like TMJ that I haven't got . Obviously their are things like Senna that can be used for constipation and I know in my case its involved with the medication slowing my bowels right down .

    I know a lot of drugs are difficult to come of and it can be quiet dangerous to stop taking them in one go . As for coming off Pregabalin in my case right at the moment ,its probably not a grate idea because the pain would be intolerable without something else to take .

    I do hope you have some luck with your physio this afternoon and it helps you

    Thank you for your post

    Tina

  • The activated charcoal is for when the bowel is too active, so it works in the opposite way to senna and it is more natural. Have you tried non-medical things for pain? Things like massage, trigger point massage, meditation, diet, stretch exercises, hot packs, cold packs, special mattresses such as memory foam, TENS, Alpha Stim, weight loss, they really do work and there is something funny with this disease, when you start to take back control of your body the disease doesn't go away but it somehow intrudes less and the symptoms are much easier to live with. Which doesn't mean that it is in your mind at all, but you can somehow reclaim your body. But everyone has to find their own particular way that suits them and their own body and their own fibro, I have seen this on with people on this website who have tried different ways of telling this disease that it has to live with you in YOUR way not the disease's way, and they have all found life better and symptoms easier. Hope it works for you one day and you can reduce your medication and have less side effects. Love and hugs x

  • Hi pinkbutteryfly :)

    I found that Pregabalin has been a life saver for me as I was getting huge body/muscle spasms due to pain receptor overload and it has helped me enormously even though I have had weight gain, but I also am not very mobile so that contributes to weight gain too :o

    I find getting the timing right for when to take it has been my biggest problem with it and have tried many avenues with that and now take 200mg at around 11 am and 11 pm strictly 12 hours apart like suggested by my doctor. Sometimes the bedtime dose is increased to 350 -400mg if i'm fatigued from lack of sleep

    I have been managing my chronic pain for 20+yrs like many of us here and honestly! it never takes all the pain away just reduces it so it's easier to manage :) Plus it can take an age to find the correct combination that works for you :)

    We are each different and react differently to different medications and treatments, what works for me won't necessarily work for you, or others. If you are not sure about any medication that you take it is a good idea to discuss it with your GP or local pharmacist where they can reassure and advise you as they are better equipped to do so.

    We cannot tell you what dosages of medications to take because we are not medical professionals and I personally, strongly advise that you speak to your doctor. Pregabalin could be giving you toiletting trouble if you're messing with you're dosages the way you explain - in the same way for many other medications, and also it can take a while to be working properly. Pregabalin is a medication that has be contolled by you the person who takes it but ALWAYS under instruction from a medical professional. It doesn't matter what dosage you take if you suffer such side effects you really should be speaking to your GP, after all you don't know whether it is the pregabalin or something else that is causing it!!.

    I'd like to give you this link to our FAQ My current medication doesn't seem to be working, what treatments are recommended for Fibro? I believe you may find an alternative that you could discuss with your doctor. If something doesn't work................ try something else!!

    healthunlocked.com/fibroact...

    I hope you find resolve to your medication concerns and as Ken points out our Mother site fibroaction.org has a wealth of fibro related info including downloadable/printable FAQ's.

    My other fellow volunteer - admin, gins, suggests looking through some of our older posts which discuss this too as there have been some interesting discussions about it.

    This discussion was extremely popular :)

    healthunlocked.com/fibroact...

    Wishing you wellness and send fluffies and smiles for you

    :) xxxsianxxx :)

  • Hi Tina,

    by the time I got to Pregabalin I had been taking Co-codamol with Naproxin for many years, the Naproxin was starting to play havac with my stomach lining so one doctor in my group practice gave me a pill to protect against the damage and then a different doctor changed me to Tramadol. I then went to the pain clinic and the doctor there prescribed Pregabalin to be taken along side the Tramadol and the Amatriptolyn (taken to help me sleep. The main thing I and my family found was that I lost my higher brain function. I couldn't hold two thoughts together, wasn't safe to be left along because I might put something on the cooker and forget it was there. Then my ankles began to swell up. I rang another doctor from the practice who told me it was a side affect of the Pregabalin as was weight gain. I had wanted to avoid any medication with this side effect because I gain weight so easily.

    So against doctors orders I went cold turkey. The only drug I took for the next 3 weeks was the Amatriptolyn. I had all the symptoms you would see with a heroin addict. But I got my mind back and I now take Co-Codemol up to 4 times a day, but mostly 2 times a day and if the day is very bad I have the option of taking a further dose of Codine up to 2 times a day. Yes I'm never free from pain but it is manageble pain and more importantly for me I'm not addicted to anything and I am able to follow a thought from start to finish. My personal opinion is that most doctors suffer from tunnel vision. They only look at one part of the picture and fail to look at us as people. What is the point in being pain free if you sit in the corner and drool? What is the point if the weight gain gives you a heart attack or a stroke?

  • Hi Nokidding

    You make some very valid points in your post ,I just wish the docs saw things the way you do especially the weight gain thing . Unfortunately im in the tricky cituation that I cant evan get a specific diagnosis of whats wrong evan after an MRI scan on my lower face ,all I got told was " we don't know whats wrong "

    Thanks for your post

    Kind Regards

    Tina

  • Hi Tina,

    I have Pregablin along with Tramadol, Paracetomol and Amyltriptine as many people have said on this thread. I didn't get the weight gain problem but I do have vision problems and thinking straight and feeling as if my head is in a cloud all the time and I can't control it. I asked my doctor about reducing the Pregablin and he said he had another patient who was doing the same and to reduce it slowly. I managed to go down from 150 mg twice daily to 75 twice daily but when I got a flare I couldn't cope with the terrible pain. After that I seemed to be in pain all the time again so I have gradually increased it back to the original dosage. I think managing the pain (note as people are saying ,not clearing the pain but just managing it is better for me so I am keeping on it. My doctor told me to come back in 3 months time for assessment and that is due in 4 weeks time. I keep wondering how the other patient has got on and whether he has had to go back on it.

    Liz x

  • Hi Liz

    Thanks for your reply

    Im glad you didant get the weight problem like so many have,i still wonder if its related to the dosage and if you take over a certain amount .

    The 150mg you were taking isant that big of a dose ,im on 400mg ,200mg twice a day and my doctor gave me enough to increase to 200mg three times a day wich im reluctant to do . I sorta don't want to hit the 600mg a day mark 400 is bad enough to try and get off.

    I like yourself moved my dosage down to 200mg a day to see if I could cope but with a massive flare up with the facial nerve damage ive had to swing back to the 2x200mg a day to cope with the pain side of things .

    With this comes the side effects like you get when first starting taking it .

    Ive been on Progabalin for over a year now ,starting at 150mg for a while and moving up to the 200mg because 150 didant kill the pain ,or should I say at least block it

    Thanks for adding your comments to the thread on this subject ,im sure all information shared has some value to people who have to take this drug

    Best Regards .

    Tina

  • I'm on 400mg a day pregabalin & am having none of the problems you describe. When I was on Gabapentin however, I had horrendous side effects, & this is one med I will Never Take Again. Gentle hugs, Julie x

  • America is the only medicine that have taken that has truly control the pain and I have with fibromyalgia but I had to be weaned off of it because of the tremendous weight gain and now I amdealing with other health issues like pre diabetic can high blood, GERD and sleep apnea just to name a few it is hard to get the weight off because of the pain so good luck. I am now on pregabalin and tramadol an cymbalta. it doesn't work as good as the lyrica but no more weight gain

  • Hi Opain

    Thanks for your post

    Im a little puzzled really . You say you are now on Pregabalin and it doesant work as well as the Lyrica ..........Pregabalin is Lyrica .....Maby you are a little confused or made a mistake

    Regards

    Tina

  • O sorry I have been on and off so many medicines I can't keep them straight. I am now on gabapentin but it doesn't work as well as rhe lyrica. Pain is worse and I have to take a aspirin or 600 to 8000mg or vicodin which takes the edge off the pain so I can function somewhat

  • Hi there so sorry to hear about the weight gain 3 stone is pretty devastating if your not used to it, I've been a fatty most my life and diets galore you wouldn't believe it. What im trying to say as kindly as poss. is this. I was on gabapentin to start with and craved food terribly and then went to see my doc who gave me lyrical to keep me happy cause I said gabapentin was putting on weight. Well hadn't read that lyrical did that too. big ooooooooooops. Well he's said he didn't understand that cause it broke down to gabapentin eventually anyway. Well he gave me lyrical to keep me happy. Well it didn't make any difference and I realise I just have to manage the craving cause its me and its important you do too it will help you feel better about yourself and your stress will lessen and hopefully your symptoms too. Really wishing you well fibro friend. xxx

  • Well despite the doctor wanting to increase my dose of Pregabalin ,im determined to get off this drug and get my life back .....oh yeah its great at blocking nerve pain signals to the brain ,but living in a perminant haze and fog along with the progressive weight gain are something I definitely don't want for the rest of my life .Having been on this drug for over a year I know the importance of gradually stepping the dosage down bit by bit .

    Having seen lots of peoples posts on getting off this drug I know some have struggled a lot and it can take patience and a lot of will and willing to have some bad days .

    To anybody else out their who are struggling with Pregabalin I truly wish you well in the long term especially if its helping you with your problems.

    Kind Regards

    Tina

  • It caused bad swelling in my feet and legs after 1 month of taking 255mgs twice a day and I was weaned off with no problems.

  • Myself and my daughter have found pregabalin a life saver after years of pain and insomnia due to that pain I hzve finally got my life back.

    I was dxd with breast cancer 4 years ago and feel that the pain I experience is far worse since then.

    I TRIED Garbaptine and asked to try Pregabalin and apart from two stone weight gain which I have managed to loose in the last 5 months im feeling so much better and have recommended it a few online friends who have since tried it and are also experiencing a great source of pain relief.

    I understand its not suitable for everyone and learning from our mistakes I would say watch the added appetite that it gives you.

  • I did mean to add that both myself and my daughter gained a bit over two stone on pregabalin before we realised it was possibly that, and we are both doing slimming world and have lost the weight despite still being on 600mg pregabalin a day, hope this helps☺

  • Hi Nanny4

    Thanks for your reply

    ,its interesting to note you managed to loose that extra weight,and what sort of dosage you were taking...600mg is as much as they recommend to take . Ive only ever done 400mg myself

    Kind regards

    Tina

  • I to have gradually lowered my dose from 250mg down to 150 mg a day because of weight gain 1 1/2 stone so far. It seems the higher the dose the more weight gain but over the last 4 days I have felt dreadful. I recently had about three weeks of feeling nearly normal and now it's as much as I can do to get out of bed. I don't know if it's because I've lowered the pregabalin or I'm having a flair up.

    I really don't know what to do for the best

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