Feel ignored! Saw consultant yesterday. He said my RA now well controlled yet, I'm still in pain, have pins & needles & numb feeling in my hands & feet, I'm dizzy, very tired & sometimes I just have to go to bed. The Dr said it's caused by the 50mg a day Pregabalin I take a day. He insists that the Pregabalin is causing the symptoms, but my go put me on it because of the symptoms!!!! But he wouldn't listen & insisted my symptoms are caused by Pregabalin, NOT a happy bunny!

21 Replies

  • Will you try reducing the pregabalin? I'm being encouraged to take it and have always decided against it....too scared of the side effects! And not convinced it would help the burning and numbness.

  • You could try reducing it to 25 mg which is a very low dose , i increased gradually to 100mg twice a day but i was lucky as I didn't have side effects . There are similar drugs if this one doesn't doesnt you . Do discuss it again with your doctor . Best wishes 🌸

  • Hi Ellis234

    I (and a lot of other people) have had major problems with pregabalin. I won't go into it all now but the symptoms you describe could most definitely be caused by pregabalin.

    I have been off it for just over a week after a 2 year (yep) taper which has been extremely difficult. My problems with it started after only a couple of weeks, but it took me well over a year to figure out what the problem was. None of the doctors I saw even considered pregabalin as a cause, but after many blood tests and head scratching sessions I figured out that if I missed a dose it left me totally incapacitated.

    There is a closed Facebook group called Lyrica survivors which is full of people with all of the symptoms you are describing and many, many more. If you would like to discuss it with people that are in the same or similar situation it may be worth checking out.

    I am actually quite surprised that you have found a doctor that is familiar with some of the side-effects. Most are unaware even though they are printed in the official literature that comes with it and even though they are the ones that prescribe it.

    I have consigned pregabalin to the list of drugs that I will never even consider taking again.

    I would also say that if you decide to come off it (and it's easier to do when you haven't been on it so long) taper taper taper. Some get away with cold-turkey, but if you don't you will regret not tapering, it really can be that bad.

    Good luck

  • I am with you there. I actually describe it affects on me as evil. I will never consider this or any similar drugs ever. It does not agree with my body at all.

  • Here's a list of side-effects:

  • And yet - what I think is interesting and a little (well, maybe a lot) frustrating is that when you try to talk to the docs, especially the rheumys, they will tell you that "most people" do not have those reactions and it is worth the side effects to "try it". My answer was pretty much "no" and that was that.

  • True, and they're probably right. Most people don't have most of the side-effects, but I can tell you for certain that those that do have some of the bad side-effects will universally say it wasn't worth it in hindsight. It would be interesting to know the accurate statistics on what percentage of people have side-effects or withdrawal effects, but the link above says that between 1/100 and 1/1000 patients experience 'heart failure' as a side effect! And that's not even one of the common ones...

    With not one ounce of exaggeration, getting off from a massive dose of morphine was a walk in the park compared to pregabalin.

  • Oh man - I am so sorry to hear that. I have never had morphine but I have heard a lot about the withdrawal... And yeah - that is quite the little range there for the heart failure side effects...

  • I'm good now, it's taken me a while but I am now on fewer drugs than I have been for years. It's only then that you fully realise the effects they were having!

    My plan is that in another 6 months I will be on Humira and nothing else. 🙏🏻 (Just 150mg dihydrocodeine to go...)

  • These diseases are hard enough without the added stress of trying to quit your medications in a safe way - but still lots of pain. I take three 50 mg of tramadol a day and decided to get off of that about three months ago. It was really hard just to get off of that little bit. And of course I couldn't move as well three days later. I am now back on it, but know I can quit when I need to. I bow to your wow with what you have accomplished...

  • Some folk find tramadol tough to reduce so you've done well to reduce it and, like you say, know that you can do it next time.

    I haven't actually got completely off opiates yet and may find that last bit really rough, time will tell.

  • Yeah - I was really surprised at my body's reactions to no more than that dosage, and honestly, most days I only take 2 (4 are prescribed). I've seen people on some blogs indicating that that take 650 or more a day, and I just shudder thinking what that would be like to quit... Hope you have a great weekend. I am getting things ready to do some canning tomorrow.. Gentle hugs

  • You too. 🙏🏻

  • I'm... I'm afraid this drug has awful side effects. My friend took it for a few months and doubled in size from fluid retention!

    I'm afraid I won't touch any of this class of drug. Carbamazepine was enough to put me off!!

  • Or maybe you need another doc? That one doesn't sound like he is helping you much...

  • Hiya Ellis. That's not on, nobody should feel as though they've been ignored. I've been on pregabalin for cervical neuropathy since last November, started on 50mg daily, currently on 200 mg daily. I noticed some improvement when I got up to 100mg daily & better since being on my current dose so it is doing some good. About 6 weeks ago I started having an odd sensation starting in my feet & now up to my knees, it's constant but is worse as I walk, if they're banged or if one of the dogs wags against my leg. This last week I've also been getting intermittent numbness in my right hand though none in the left. The PIL lists both tingling feeling & numbness as common side effects.

    I had a telephone consultation with my GP 3 weeks ago so took the opportunity to tell her about this weird feeling. I explained the sensation was resonant, like the vibration when a tuning fork is struck, which she thought was an apt description. She did say that they could well be related as both are side effects of PGB but she would examine me at my next appointment, which is tomorrow morning. She asked me to bring a urine sample to check if I could be diabetic which I will though I did test myself with my h's diabetes testing kit & I was 5.8 (normal diagnosing blood sugar level when taken randomly is below 11.1) so I'll see what she makes of that & what the sample result is.

    It's bugging me somewhat because she'd suggested I tried PGB a couple of years ago but as my h had had a horrible time on it I opted for gabapentin. I stuck at it & got to maximum dose but had no relief so it was agreed I'd taper off it. Now I've relented it could be that I'll need to stop PGB anyway. It does seem ironic that a med that's prescribed for neuropathic pain may cause neuropathic symptoms elsewhere.

    Anyway, that's my experience so we'll see what transpires. If I was you I'd follow it up as some of your symptoms do seem similar to mine. The dizziness could be related to PGB, it is a listed side effect. Is the doctor saying you're not well controlled yet? If so the fatigue could also be the RD but, again, is a side effect of PGB so that one may be more difficult to determine which is responsible. I hope you are listened to though & whether they're related or not you receive the answers you need.

  • Thanks for your reply. I was put on pregabalin initially for the pins & needles & numbness in my hands & feet by my GP RA doc says it's causing my symptoms, so I'm confused? But having read all the replies & a link, I'm even more confused?

    I am dizzy, clumsy, put a stone on in weight which I'm upset about, as sons wedding in July & I had lost 2 stone before starting on pregabalin!!

    RA nurse returned my call today, I'm to ring up next week when she has letter from my appointment I had with consultant, plus my ferritin levels through, taken as I'm shattered most of time, probably come back saying chronic illness anaemia again!

    I'd go mad if not for this site!!!!

  • Hi Ellis - Yeah, I agree - I think a lot of us depend on this site for sanity of a sort

  • Weight gain is a very common side-effect of pregabalin.

    A lot of people find it goes when they come off it.

  • Oh man NMH - That really actually sounds pretty scary. Please let us know how your appointment went?

  • 50mg a day, I am on 450 and it is used to control the fibro that I have, in addition to all the other problems. You don't say how long it has been prescribed but it can take 6-8 weeks to settle down, it took all 8 weeks for me, but that includes to increase from 150mg to 300mg after 4 weeks as it was not succeeding in blocking the neuropathic pain. It is perfect now and the side effects have settled down.

    Without knowing the full details of your symptoms it is difficult to advise but I am suprised, because the initial dose recommended, as in the BNF, is 50mg, 3 times a day, 150mg in total. It has solved my pain issue, for the most part and I would not wish to return back to the previous pain.

    It is not clear who recommended prescribing it but I would talk to your GP about the dose level that you are currently receiving, quoting the BNF if necessary as the maximum is 600mg a day, you should always try and manage with the lowest dose to achieve the effects and only increase after a 4 week period has passed at each dose change without result, I am happy to have that 150mg reserve should my pain return.

    Good luck and persevere, with patience. oops sorry for that awful pun


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