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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pinkbutterfly1000
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I agree it certainly deals with the pain and after trying several other things that didant work it was a blessing for this . Just wish it didant have such nasty side effects .
Hugs
Tina
• in reply to
Oxcarbazepine is also brilliant for sciatic pain, without the weight gain.
• in reply to
Ah! I must try that, because as your belly grows and the weight piles on then your pains worsen if' like me, it is pressure on your skeleton and the nervous system that is causing the pain.
so Oxcarbazepine is an ideal change , thanks Bowbells, and great post pinkbutterfly1000.
I was on gabapentin for about 4 years and could not take the side effects any longer so was switched to pregabelin which I was told was gentler than the gabapentin. Does help with the pain could not manage without it. Side effects put on 4 stone over 6 years which I cannot seem to shift, ankles all swollen, toilet is nightmare trying to pass a motion, legs full of bruises that never go away,constantly hungry,loss of memory which is very embarrassing, list is endless.
I too tried Gabapentin and it didant seem to work for me with the pain thing and so after seeing a Neurologist he recommended Progabalin.
I must say I didant pay much attention at first to the few pounds I put on despite it being obvious to me ,but eventually the weight thing got worse and now ive crept upto nearly 15stone ,and evan got my doctor to check my weight incase my scales were wrong .
I tried for a while to cut my dosage down to half what I was taking and after a while the intolerable pain started to show itself once more ,so had to come back on a stronger dose of Pregabalin ,and this was like starting all over again with the drug and its severe drowsiness ,dry mouth and constipation . Last night I took 200mg before going to bed ,and it really knocked me out and I still feel drowsy 8 hours after and feel really spaced out . I did get past all this some months ago after my body and system got used to this amount . It must be terrible for you to have put on 4 stone like you did and the other side effects that came with it .
Please look after yourself and thank you for your comments
Sometimes the medication side effects feels worse than the pain but I cannot function without the medication since the pain goes through the roof. See neurologist this week for the first time GP did not see need to refer me don't expect much help since I have not had much over the last 6 years. Constantly fighting with my GP for him to do something,pain clinic have signed me off nothing more they can do. My pain started after surgery for acid reflux if only had hindsight then I would have found another solution. Take care.
HIYA, I HAVE BEEN ON GABAPENTIN FOR ABOUT 4 YEARS FOR NEUROPATHIC PAIN IN MY ABDOMEN, IN MARCH LAST YEAR I BECAME PARALYZED AND DOCS THOUGHT IT WAS A VIRUS, I DID IMPROVE BUT NOW HAVE CHRONIC NERVE PAIN IN BOTH ARMS, HANDS, LEGS AND FEET, IN NOV LAST YEAR I WAS WEANED OFF GABAPENTIN AND PUT ON PREGABALIN!!!!!!! WEIGHT GAIN, NOSE BLEEDS, DROWSINESS, NO CONCENTRATION, MEMORY SO SO POOR, EVENTUALLY I COULDN'T COPE WITH 18 SIDE AFFECTS SO WAS PUT BACK ON TO GABAPENTIN AFTER 8 WEEKS. ALL WE WANT IS TO BE PAIN FREE SO WE WILL TRY ANYTHING EH. I FEEL FOR YOU, ITS SUCH A STRUGGLE ON A DAILY BASIS TO MANAGE LIFE, BUT BE STRONG, ASK FOR HELP, DON'T SUFFER, EASIER SAID THAN DONE, BUT PLEAS KNOW YOUR NOT ALONE. I HAVE HAD AN AWFUL FLARE UP OVERNIGHT AND AM FEELING ANGRY, FRUSTRATED AND SO SO PIST OFF WITH THIS DEBILITATING PAIN, BUT, TOMORROW IS ANOTHER DAY. KEEP STRONG AND KEEP POSITIVE PEOPLE AROUND YOU
Hi Tina and everyone else with Pregabalin problems! I'm the same as you guys .. but I was really lucky that I never went on a high dose (too scared once I'd heard how bad the side effects could be!) and I'm now weaning myself off very, very slowly.
The first thing was that the doc wanted me to start on 75mg and built up in steps of 75mg each week until I reached the highest possible dose (or the dose which seemed to ease my pain most). Well, I took 75mg on the first night and felt so spaced out and horrible! I read the leaflet and found out that they did 25mg tablets too, so I asked my doc for those. That was better, and I eventually increased to 175mg each night. This didn't do an awful lot for the pain - helped a bit, but not a lot - but it really helped me sleep at night (I have chronic insomnia). I tried building up from 25mg in the mornings too - was thinking I'd take it then to help the pain through the day - but I just couldn't function when I took even 25mg in the mornings so I just stuck to taking 175mg at night to help me sleep.
However, I've gained a lot of weight and have chronic constipation. I've recently discovered that my problems may, in fact, be due to adrenal and thyroid insufficiency .. not fibromyalgia at all. So, I'm now going down that route to finding something to help me and gradually weaning myself off the pregabalin.
Once again, I'm decreasing the dose by 25mg at at time. I'm now down to 125mg at night and hope shortly to decrease to 100mg. I know it will be a long, slow process coming off them.
So, if you are trying to wean off this drug, you need to get hold of the lower strength tablets and wean yourself off slowly like I'm doing. Cutting down by half, like you've done Tina, you'll get those bad withdrawal symptoms - you have to do it slowly. Talk to your doctor and let them help you wean off at a suitable rate (I haven't noticed any problems from doing it this way - in fact, thanks to the thyroid supplements I'm now taking, I've started sleeping quite well even on a lower dose of pregabalin). Hope it works out for you. I'm really hoping that once I've got off this drug I can start to lose some weight!
Hi i have the same problems as you guys. I have sacroiliac joint dysfunction, and was put on lyrica as well as morphine tablets and morphine liquid. I too have put on about 3 stone in weight wish i just can't shift.
If i forget to take the lyrica for some reason or am late taking them within an hour or two i start to get cold sweats.
Thanks for your reply . It just goes to show how reliant people can get on this drug. You obviously have the same problem with the weight thing as myself .
Kind Regards and Hugs
Tina
I too took pregabalin for several years, at the low dose of 75mg night and morning. I gained 18kg. Under supervision I have also been taking, and still take Morphine slow release and this is the mainstay of my analgesia as I tolerate it well. However my consultant switched me from pregabalin to Topiramate which is an excellent painkiller, as is, I have found Oxcarbazepine . There are plenty of alternatives to Gabapentin and pregabalin which do not give weight gain but many are off licence so GPs (who have no training in chronic pain) will stick to nice guidelines which advise Gabapentin and pregabalin. A pain consultant will have access to a far wider range of drugs and knowledge so it is best if you can go to a pain clinic to get your meds sorted. You are entitled to ask your GP for a second opinion. Good luck.
So you still put weight on at taking only 75mg twice a day .
My doctor says its ok to move upto 600mg split over 3 doses of 200mg daily . The pain they say I have is neuropathic pain so im not sure if the other drugs you mentioned would work with that or not ,must admit ive never heard of TOPIRAMATE .
As far as asking my gp for help she wont do that because I did surgery abroad and in her eyes its not ethical to help through the nhs . I only got to the hospital last time because I pestered my dentist to get me a referral .
After seeing my doctor a few days ago ,the only help she offered was to up the dosage on the Pregabalin.,wich I don't want to do because of the bad side effects I get now .
The drugs I mention are for neuropathic pain. That's what I have too. It looks like if you are not a British National you will have to pay. If you are a British National complain to your local Health Board because you have every right to NHS treatment. If it is not available in your area you can apply to be seen outside your locality. In the case of chronic pain you probably will get better treatment privately, and without waiting. I am a British National and I still had to pay a huge amount for my treatment because there was so little available on the NHS at that time.
Hi to all fellow sufferers from Pregabilin/Lyrica. Because of pain, we try whatever the medics suggest, perhaps in our ignorance? I was given. Lyrica about 8 years ago as I had restless legs, spinal stenosis and fibromyalgia with osteoarthritis. I really thought I was going to get some relief from the relentless pain. All of the side effects mentioned in previous posts were what I discovered. The two worst things were the weight gain and the extreme tiredness. I couldn't take the morning dose if I had to drive to work ( I was still doing the odd days as a substitute teacher) -I had to get there early, take the tab and wait for the initial tiredness to pass. The dry wanted me to go higher than 300 mg per day but I resisted as I saw what effect it had on my body. I put on 10lbs in a few weeks and the weight gain continued. Eventually I decided it wasn't making a big difference to the pain and I came off by myself (rather foolishly) and it was an absolute nightmare to endure the withdrawal symptoms. My pain and lack of mobility have both increased over the years since then and all the medications I have been given seem to say that weight gain is a side effect. I find it soooo hard to lose weight as the professionals all tell me I need to reduce the load on my joints. I have tried so hard but not being active doesn't help. Someone mentioned the hunger aspect. I don't know if it's me just fooling myself, but I get times when I really crave something sweet so I don't know if that is a related thing or it's just my sweet tooth lol!
Anyway, it's reassuring in a way to find out that so many people are in the same boat as myself as some of my family must have thought I was just making excuses for the weight gain. ( re restless legs-I was given ropinarole at that time for this and found it did help the restless legs but again! it had major side effects so I came off it and have been able to manage more or less with the meds I'm currently on.
I fully understand what you mean by the tiredness after taking this drug ,many evenings after ive finished all my jobs for the day I sat down to watch tv and just fell asleep. Twice I was on a bus and just fell asleep on the public transport . It does mention not driving and operating machinery while taking this drug . Most days I just battled on trying to break through the drowsiness ,it was really hard . After several months I seemed to be able to tolerate 200mg at 8 am in the morning and 200mg at 6 or 7 oclock at night with the only bad effects of the constipation and weight gain .
Obviously how tight the clothes became and not being able to fit into a pair of jeans should have alerted me to this fact and eventually the penny dropped and I got on a pair of scales and was really shocked by what I saw .
Also I must say this two other side effects ive noticed have been my eyesite seems rather erratic and also the tinnitus ive had for 30 years seems to have gotten worse since taking this drug .
Thank you for you post
Kind regards
Tina
Hi kerry, I suffer severe restless legs, You may already be a member but just incase you didnt know healthunlocked have an excellent rls forum.
Thanks for that info. hadn't realised there was a separate forum for restless legs. I have found that if my feet are cold in bed, my legs will will be worse so I bought an electric fleece , a single one to cover my feet in bed and keep it on all night. This helps most nights unless my legs are really bad.
Never tried it because of the side effects - too many serious ones to have all at once. Never tried any pain killers long term.
The ones I have had short term are scary - the grill caught fire and I sat in the kitchen saying "this is lovely we have a fire in the kitchen. I always wanted a real fire" Totally unaware that this was dangerous. My daughter was 10 at the time and thankfully had the presence of mind to switch the grill off and put the fire out. Who knows what could have happened if I was on my own.
Dear Tina, sorry to hear of your unfortunate situation..... My own daily dose it 300mg twice daily. Along side this to help with certain toilet side effects I take every morning a sachet of "fibergel" (orange flavour) - it's an absolute necessity for me .... a very gentle and pleasant tonic, quite compatible with most folk do why not try this and let me know how you get on..... I wonder pink butterfly do you have a good relationship with you GP..... Does the practice continue to prescribe with the knowledge that you daily living has become quite difficult due to the medication rather than what it is supposed to be treating?? There are alternatives and these should be offered to you.... I would not recommend self management of the quantities though - if you need the GP to respect your condition you should really respect their interaction and at the very least inform them of your actions but tell them WHY . Let them help let them do their job let them know so that they caninise any negative result concerning your health........ It sounds like you might do well by reducing the dose size but increase the number of times daily that you take it eg take 100mg four times daily this not impacting your body so much..... There is so much out there to help and of course you have done one of the best things in sharing your experience and asking others that take the same drug ...... I hope you have found good from your posting ...... Please feel free to open up a conversation with me if it helps ...... Regards. Joseph
I tried cutting the 200mg down to a 150dose instead ,and frankly this didant stop the pain .
For anybody out their reading this
Let me thank you for all your replys ,its comforting to note that im not alone in this dilemma and that others are finding this drug does its job but has a lot of side effects involved with it .
Thank you ..... Best wishes and keep your spirits up ...... Regards. Joseph
This is the first time I've heard Pregablin mentioned even Drs when looking down my medication have asked me what it is and what's it for.Well here's my story about it ,I was given it for IBS about 10 yrs ago which at that time if I think about it now was probably bearable,but stupid me at that time thinking the Drs always right I carried on taking it 200 mg a day.By the way at this stage my weight went down to 6st5ozs.After a spell in Hostpital with a near death experience with Emphesema ,which was the Hostpitals only concern was getting me better (rightly so ) they never gave me my Pregablin for 2wks.After returning home and another week later,I was in a terrible state anxiety,shakes,tears and suicidle so my husband got me in the Drs,who then upped the Pregablin to 300mg and sent me to see a psychiatrist who then also put me on Mirtazepam . Bringing you up to present day I am now suffering chronic IBS ,and struggling like mad to come off both Drugs.Just to go back awhile I've tried twice to come off Pregablin but the pain and depression is so serveier it's unbearable .So much for listening to the medical profession.(Sorry I do have a couple of good consultants ). Sorry for the rant .
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