I’m hoping someone can give me some help regarding pregabalin - and please don’t worry I understand that people can’t give medical advice etc but I can’t speak to my gp until Monday.
I was diagnosed with fibromyalgia quite some time ago but was never referred to anyone relating to pain management until I changed gp last year. The pain team assessed me and prescribed pregabalin increasing slowly until I reached 75mg twice a day. All well and good until this week. I have other autoimmune issues so had my covid booster on Wednesday and had a bit of a reaction to it - nothing too nasty and expected for me but left me knocked off my feet slightly. Since Thursday evening however I’ve been feeling really really sick, had an upset stomach, switching between too hot and too cold, bad headaches and not really been eating. In the middle of this I was putting my weekly meds together in an anabox organiser that I use and I realised this evening that I forgot to put my morning pregabalin in so have only been taking my 75mg evening dose since Wednesday and I missed Thursday’s be of those as well. So Wednesday was normal 75 x 2 times a day, Thursday none at all and then Friday and today just the 75 once a day.
I do know I’m not meant to stop pregabalin suddenly so I’m wondering if this could be slight withdrawal symptoms and if anyone else has experience of this? Also when I started on pregabalin I was told I could reduce my dose quite quickly and step down every few days but the increases had to be done much slower (I now know the step down advice was bad and it should be slower too!). What I’m now wondering if after 3 days of effectively taking a half dose should I just go straight back to the normal 75mg twice a day or should I go back to starting on 25mg in the morning tomorrow until I can speak to my gp? If anyone has any experience of this any advice would be much appreciated.
I must admit if this is how it feels to miss a few tablets then that combined with the difficulty I’ve had losing any weight since I started it and a couple of other niggly issues means that I think I’ll be talking to my gp about reducing down and coming off it slowly anyway and this might be the perfect chance.
Thanks in advance for any help and as mentioned I will be speaking to my gp Monday I just don’t want to risk going the wrong way tomorrow if I am already have symptoms caused by it.
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Mifford
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Yes, it's likely that you are having some withdrawal symptoms.
I've went back onto my full dose after missing a couple of doses in the past, and it's not going to do you any harm although you might still a bit iffy for a couple of days
I've been on Pregabalin for 10+years now, the benefits for me outweigh the negatives (weight gain). Doesn't take pain away but reduces the intensity enough to allow me to function and live my life including work part time
Thank you - the speedy response is much appreciated and has put my mind at ease. I’ll carry on back to normal tomorrow and see what happens.
Unfortunately in my case the weight gain causes a bit of an issue as I have quite bad osteoarthritis in addition to fibro and also have problems with my hips so I’m sleeping better with pregabalin and as you say it definitely takes the edge off the fibro pain but the weight gain puts more pressure on my joints making them worse so its a double edged sword. I had lost just over 2 stone until the gains started again and the difference is noticeable - not helped by a thyroid problem making it hard to lose as well.
I think the best plan for me might be to have a chat with the gp about trying to find a balance between the two if we can and maybe see about reducing the morning dose at the very least to see what happens.
I’m glad it works well for you - I’ve definitely found it more tolerable than some of the other prescriptions I’ve tried so if I can find a solution to the downsides I’d be a lot happier
Hiya and welcome. I have been on pregabalin for the past almost six years now for fybromialgia and recently it was increased for my other medical condition. I was lucky enough not to put weight on as a side effect. The only side effect I have is swollen wrists + fingers which you can clearly see and little bit my ankles are swollen. I never missed a dose so I can't tell about withdraw symptoms. I know it definitely helps me with pain even if it doesn't take it away.
When it comes to covid jabs, well altogether I had six of them from the onset of the pandemic. Two years back I had covid which made me pretty sick for two months. Since then I was diagnosed with long covid and didn't have no more jabs.
I was OK after each jab but everyone is different.
Your best bit is to speak to the GP to get some advice.
This was jab number 9. I have lupus along with other autoimmune issues so it’s not unusual for my immune system to react to be honest. I had covid back in November but luckily it was only a few weeks after jab 8 so it was at peak effectiveness. Long covid sucks and is so debilitating though so I hope you get some respite from it soon.
I'm on 300mg in morning and 300mg at night and if I miss even one dose,
I start feeling unwell, I start with feeling strange, then it goes into a cold sweat, then it's feeling cold and lethargic, then the stomach pains and then physically sick.
There is no way to come of this tablet quickly and it must be slowly does it.
I dread when it gets to the last strip, I must say.
Its a special and they only give you one month at a time so be very careful with this drug and take your time coming of it please 🙏
It's a great pain killer however and I couldn't function without it!
Don’t worry I definitely won’t be coming off it quickly and will be with gp input - this one was purely accidental. The fact it’s so hard to come up off does concern me but at the moment it’s been a good experience with it. The only two issues are that for me the weight gain counteracts it due to other conditions and I’m a bit concerned it is masking other things that are in the background. Hopefully I’ll be able to come up with a balance that works for me x
I hope you are feeling a bit better.I always have these withdrawal symptoms when I forget one dose.I never realised what harm misses doses could do but I collapsed in waiting room at hospital after wrongly been told not to take morning and evening meds as was having a colonoscopy.I collapsed and was kept in hospital a month due to damage this did
I have been on pregablin for about 2 yrs and I recently thought I would reduce it to see how I feel taking less. I take 175mgs a day. I didn't take the 75mgs (Nightly dose) for a couple of days and felt pretty awful so I know that reducing by that amount will cause withdrawal symptoms. I am now back to the original dose. Lesson learnt!
At one stage I was on 100mg morning and night, I put a lot of weight on and had to come off it - I had been taking it for 2 years as a replacement for Gabapentin. It’s been 12 months the end of this month and I’m going down to 1x 25mg in the morning and 1x 50mg in the evening. Next step after around 3/4 months will be 2x 25mg.
It’s not easy getting off it, you will experience withdrawal even by missing one dose, the problem is that it has a very short half life - around 6 hours, and can’t be detected in a Urine sample after about 6 days. The half life is the amount of time it takes to reduce the concentration of it in your system by half, so as you can see the result of missing a dose can be quite dramatic! I don’t reduce further until I feel that my condition has stabilised, it took longer for that to happen with the higher doses, as the dose reduces the difference is much less dramatic. Please don’t try to reduce rapidly, you would probably find it quite distressing, take it steady and be kind to yourself!
I’ve taken 50 this morning and will do that for the next month with the normal 75 in the evening for now. For me it’s taken the edge off the pain but no more than other things I’ve taken but it does help me sleep better. I’m not sure if just taking the evening dose is possible but that might be the best solution. To think the pain team were telling me coming off is a lot easier and just reduce down every couple of days! Frighteningly bad advice
I don't lime to miss them they obviously help some how along with all the other painkillers I take but tbh I would take the dose your meant to it's for the best
hi i definitely think it’s withdrawal symptoms. I’m in max dose spread out over the day and I find if I’m a couple of hours late taking them I start to get headaches and feel sick.
I am thinking of coming off pregablin but have been told it could take me up to a year and I’m worried the withdrawal and pain might be too much and then there is what do I go on once I’m off it. Just heard so much bad stuff about it. Been on it 5 years and gained 5 stone. Which is another reason I want to stop taking it.
I would just start taking them again as normal. You can ask your pharmacy to make up dosset boxes s your tablets come made up. I have to do this due to the amount I take.
I am sorry you have been feeling so bad recently. I can tell you some of my experiences with pregabalin however this should not be taken as advice. You must speak with your GP about your situation.
I started my Pregabalin journey in 2006 for Fibromyalgia. I started on 75mg twice a day and this was slowly increased to 150mg twice a day. In 2007 I had spinal surgery which took me a long time to recover from. My GP referred me to the Pain Clinic and the specialist told me to go onto the maximum dose of 300mg twice per day and to continue with Tramadol but add paracetamol which gives Tramadol an extra kick.
On this amount of medication life became bearable and I could continue with my work and life.
Then last year I had a new GP and due to struggling with getting enough sleep, very stressed and widespread pain I told my GP that my quality of life was terrible, and I wanted some help. Over a 3 month timespan I had a whole series of blood tests until he finally found my problem. I had a very low testosterone, almost nonexistent. He immediately started me onTRT therapy and slowly over the past year most of my health problems slowly melted away. I was able to come down to 100 mg pregabalin very very slowly over about 12 months. I still take 100 mg twice daily due to referred neuropathic pain in legs and feet. So slow reduction is key.
While on the higher dosages, if I forgot to take pregabalin in the evening I would wake up in the night, feeling totally out of sorts, itchy. If by the following day I missed the morning dose I would come out in cold sweats and feel nauseous..
So yes, any reduction must be very very slow otherwise you will fail to come down. I dropped by 50 mg a day, on the evening dose only, and every other day. When stabilised I would then skip for 2 days, and then consolidate this reduction for a month. Then do the same with the morning dose, cut back by 50 mg every other day, then skip the 50 mg for two days. So day 1 normal dose, day 2&3 drop 50 mg then day 4 take the full dose. Day 5&6 drop 5 mg each day, so that over about 3 months I would be taking 50 mg morning and evening less.
Sounds very similar - I saw the main rheumatologist regarding my lupus recently and he thinks I’ve been massively over medicated. My main consultant is just giving me steroid injections every 3 months max and then adding in injections to specific joint issues. He thinks they’ve over done this and that there could be a problem with my adrenal glands. I did a home test and my DHEAS level is rock bottom so the new gp has referred me to endo so waiting for that to come through. The Rheumy was concerned that my meds could be masking symptoms - the weight gain hides that I could be losing weight with my adrenals otherwise for example. Funnily enough if he’s right then it would explain the reaction as well so while I’m on pregabalin it’s really hard to tell what’s what.
many thanks for the tips and advice everyone - very much appreciated. I had no idea pregabalin was so addictive and although I knew I would have to come off it slowly it certainly wasn’t spelt out quite now addictive it is. For me I’m not sure the benefits are outweighing the downsides and with other things I have going on I will definitely have a chat with my gp about whether to at least look at reducing down the level going forward and the advice here has been very useful
Don’t get Addictive mixed up with developing a Dependency, there’s a big difference; Addictive is about wanting to take the stuff, Dependency is about needing to take the stuff.
Hi Mifford,I've just been catching up with things on line and read your predicament.
I think you could be spot on about the symptoms you have experienced with pregablin on missing taking them at the dose you had worked up to.
I have had issues previously on reducing the dose in a short space of time. Similar symptoms as yourself. Your correct in trusting yourself when you think you should reduce them at a slower pace.
In is frustrating when you get different advice from different doctors, Personally, I would go with your gut instinct on this and do it at a pace that suits you, to lessen any withdrawal symptoms.
As with different medications working well for some people and not so, for others, we all have to go through the process of trial and error on trying different meds and on different doses to work out what suits each individual best. Equally, its just as important to recognise that if your not comfortable on any meds, then trying different dose or reducing a medicine at a rate that your ok with also has to be a personal thing. A good doctors advise would be for you to do this at a pace that suits you best, as only you know how you feel when taking a medication and if your getting such ill feelings as you say you experienced , you shouldn't have to suffer such.
I hope this makes sense. It's not a case of one size fits all ,it's personal to each and everyone, as there are other factors each person has to consider, for example time of day, dose, wether your taking any other meds.ect.
Good luck, if your ever unsure, you could always jot things down ,keep a diary for yourself, to see if there is a pattern showing up of any side effects.
Hope you get it sorted, most of all trust your own instincts, you'll probably find you were right in doing so.
Thank you and all makes total sense - a spot on description.
I agree that we know ourselves and how we feel far better than anyone else and instinct is a great tool - I have lupus which took a very long time to diagnose so mine has become finely tuned 😁
I'm on pregabalin and I agree with you that the coming off it advice you were given was not good.You are having withdrawal symptoms because your body is used to having the level you were on. I would suggest going back on the dose you were on. Other option is that, if it didn't make any difference to your pain level without taking it, you could reduce your dose and come off it to see if it's with taking it at all. I'm on 150mg twice a day due to an accident damaging part of my spine, nerve pain the main reason. I took it for fibro for a few years and then stopped taking it because I felt like a walking pharmacy lol.
I found it didn't help my fibro but if you have nerve pain issues then it's great.
Maybe you could try taking 2x25mg because that takes you down to 50 mg twice a day and see how that goes.
I'm not a medically trained person and this is all going by my experience with pregabalin. You are an individual and different things work differently for different people. Go by how you feel on your meds and how you feel if you don't have them
How this helps and isn't toooo confusing lol.
Hope you feel better soon and sending fibro hugs xx
Thank you. I’ve done exactly that for the morning dose as I still had some 25s from when I was increasing but have kept the 75 evening as is. I don’t think it has a noticeable effect on pain levels for me but that’s because of my other comorbidities. It is noticeable how much better I slept last night though and it really is useful for that. Like you I have my own pharmacy supply in my bathroom and feel I’m a bit over medicated at the moment which is hiding other symptoms but I do think it helps in some aspects so will try and find a balance that gives me that at a lower level which I think is probably the right route for me with my particular circumstances at the moment
Hi all. I started taking Pregabalin in January for not only Fibromyalgia. Hip bursitis, Labra Tear osteoarthritis etc.
I started on 25mg until beginning of April. Morning only. I didn’t read the enclosed leaflet at this point. I felt I needed to up my doze. The GP put it up to 25mg one morning and night. Only 50mg a day.
Since taking pregabalin in January this year I have put on a stone and have developed body tremors and shakes which can be quite violent.
As I mentioned before I didn’t read the symptom leaflet and was surprised to read the amount of side effects I had relating to this drug the two mentioned (Weight gain and tremors) etc. I’m back down to 25mg a day and wanting to wean myself off them.
I didn’t realise how many of the symptoms were applicable to me
I have chronic Asthma with a constant cough this also got worse along with a sore throat The tablets are just making my health worse so I can’t wait to come off them
Im glad they are helping most of you however they’re not for everyone and beware of the side effects
Hi Mifford. Sorry for the late reply. Yes, it is an awful rattle off Pregablin. I started on 25mg a day and this increased to 225mg a night and 25g in the morning. I am thinking of coming off them for this reason because I often forget to reorder them and because my symptoms are becoming more frequent and aggressive. That means to me that they aren't doing a great deal at all and are pointless. At first they seemed to help, but you become used to them and hence the dose I am on now. If they are working for you I would stick with them
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