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Off label uses?

Posted , 7 users are following.

Guest
Guest

I have recently been pescribed Pregabalin for RLS and insomnia by my neurologist. This is because I have developed a high tolerance to the z-drugs I have been taking for many years and are not working anymore.

I was initially given 75mg to be taken once at night. But I have since realised that it can also help with GAD so I have been back to the GP and asked for more. I am now on 150mg 3 times a day.

Just wondering what people think of my situation?

0 likes, 18 replies

18 Replies

  • reg79179
    reg79179 Guest

    Posted

    Be careful....I was on that...when i quit the withdrawals were pretty bad but i did go cold turkey though
  • elizabeth85938
    elizabeth85938 Guest

    Posted

    Hi John

    ?Be careful on this drug and I am concerned that your GP has upped the dose to 450mg a day so quickly. Yes, it can make you sleep to start with but as your body gets used to this it can turn on you and cause insomnia. It can also heighten anxiety rather than allay it. There are other side effects as well and it is probably best to do your own research on this. It is also very difficult to stop taking it without withdrawals as I am finding out to my cost. I never had restless legs/arms or muscle spasms until I had taken Pregablin for about 6 months - I am currently on 100mg x 2 a day. I am tapering down my doses slowly (10mg) a day and then keeping at that level for 2/3 weeks while my brain and body adjust before then coming down 20mg a day and so on. Do some good research before you decide on whether to continue or stop. If you have not been taking it very long it is easier to stop but you should not go Cold Turkey even then. Most GP's do not seem to know much about this drug other than as far as they are concerned, it works - but have little knowledge about side effects and withdrawals.

    I wish you well and hope that the decision you reach will be a well informed one. Best wishes

    • Guest
      Guest elizabeth85938

      Posted

      Thanks Elizabeth for your detailed reply. The truth is that I forced the GP to give me more because I'm so concerned about my ongoing insomnia. I also need more because I also suffer with GAD.

    • elizabeth85938
      elizabeth85938 Guest

      Posted

      I realise that from your post John, but this is not a miracle drug that you can just start on at such a high dose, that is why I am concerned that merely upon your request your GP actually gave you what you thought you wanted. Please do the research - go on Google and type in Pregabalin side effects and then withdrawals. Look at the information online until you are satisfied you have enough to base your decision on. There is a Closed Group called Lyrica Survivors on Facebook. You have to give a good reason as to why you wish to join this Group to be accepted. Your reason would be exactly the post you made originally. If accepted all the information is there to help you and support you.

      ?I do understand your dilemma John - you have life changing problems and you want it all to go away (that is why I took Pregabalin, also known as Lyrica in other Countries). Pregabalin has caused me far more problems than living with the dire pain of a trapped sciatic nerve in the long run. If you decide to go ahead and stick with the treatment and have any problems at all, either post here or pm me and I will do all I can to help you. Stay hopeful ! smile

    • Guest
      Guest elizabeth85938

      Posted

      Thanks again and for your offer of support. I have researched it and accept what I read. Just to complicate things a bit more, I take speed twice a day for ADD. Apart from that lot I am very fit and healthy. I do yoga, run around 50 miles a week and have a personal trainer for circuit stuff. I am training for a half marathon in September. I'm 54 12 stone and 6 ft . Regards

    • Alwaysalone
      Alwaysalone Guest

      Posted

      Hi John.

      And all that will mean nothing once pregabalin takes hold.

      I used to take it and it caused more problems than before i began using it.

      It is a poison and causes irrepairable damage, even causing suffering years after not using it.

      Beware.

      That's all i'm saying.

      Best of luck - with the pregabalin and the marathon.

    • jane14277
      jane14277 elizabeth85938

      Posted

      I joined it elizabeth  and it is a very interesting and fairly heartbreaking site

       

    • elizabeth85938
      elizabeth85938 jane14277

      Posted

      Yes Jane it is quite hearbreaking but these are real people with real withdrawal problems. I will look for you in the Group but don't know your surname? Please stick with it whatever you decide to do as there is so much support and help open to you.

      Very best regards Jane

    • jane14277
      jane14277 elizabeth85938

      Posted

      Thanks elizabeth I had decided not to take it, thank god, I wish I known to research statins but at least now I know. I just remembered it is a closed group and you have to be approved to join it's called lyrica survivors. You probably couldn't find me on the group there's nearly 4000 members

       

    • elizabeth85938
      elizabeth85938 jane14277

      Posted

      I am a member of this group Jane and have learned so much about all these drugs just handed out like sweeties by GP's. I am tapering off Pregablin slowly but my own experience of it is manageable as far as w/d symptoms for me because I only taper by 10% every 3/4 weeks. I am not one of the horror stories thanfully but the drug has affected my cognitive abilites and memory and I can't wait to get off it finally. Glad to hear you decided not to take it! The Group are very supportive and I have made many friends since joining. I wish you well in the future.

    • jane14277
      jane14277 elizabeth85938

      Posted

      Thanks for that elizabeth I'm sorry you did take it sad. I have damages from statins.......the nerve pain the memory...coq10 helped with that a lot muscle wastage and a few other things. It's a very supportive group. I've been very impressed with some of the posts

    • elizabeth85938
      elizabeth85938 jane14277

      Posted

      Yes Jane, I am more than sorry that I have taken it but at the time I was unable, to stand, walk. sit or sleep because my crumbled spine had so viciously trapped a sciatic nerve I literally begged my GP for something, anything to take away my pain. I have had over a year pain free now on only 100mg x 2 a day and feel that I can begin to come off it and find other ways to manage that pain. Or maybe, just mabe, my bone doctor will /have a plan when I see him on 31 March. I'm ever hopeful smile Look for Liz Hirst on our group and I'm sure you will find me. I'd like to keep in touch if you ever dip in again. Be well

       

  • Sneakypete
    Sneakypete Guest

    Posted

    John. I'll second much of what you are reading here. Lyrica is a very nasty drug once it turns on you. It has taken me well over a year to reduce my exposure by 80% and its been near hell the whole time. And the last 20% is the hardest part. I suspect it will take me half as long as I've been on the drug to get off of it without losing my mind and I still don't know how I'll be after I cut to zero. All of your GAD and insomnia issues will likely be far worse during withdrawal and up to 2 years after your last dose. For people who go cold turkey these side effects can become permanent, although that does seem rare. Tred very carefully and good luck. 

    • DAVIDSONAPHAN
      DAVIDSONAPHAN Sneakypete

      Posted

      Hi there I have a bottle of teva-pregabalin (75mg) in my medicine cupboard from when I had a small bout of shingles. I didn't take them as didn't need them bit recently been having an issue with my sciatica and came across this when googling to see if it will work. All this information is making me decide not to and just deal with it... hmmm.

    • elizabeth85938
      elizabeth85938 DAVIDSONAPHAN

      Posted

      You are a wise man to research and decide not to take this drug. It is so toxic and yes, it would help your sciatica, if you are prepared to lose cognitive abilities, short term memory, loss of words and language, balance, blurry eyesight etc.etc. It isn't as if each dose goes into your central nervous system with a post-it note on saying "Only shut off pain receptors and nothing more". See a Physio for the sciatica and if necessary ask your GP for temporary pain relief that enables you to exercise as Physio recommends to release the trapped nerve. See how you go that route but taking Pregablin knowing what you know now would be (I believe) damaging to your whole person and mind. Also it is an old script that has been sitting in your medicine cabinet and may not be fit to take now. Hope you get good treatment for your sciatica and glad to know you are over the Shingles! Be well

    • DAVIDSONAPHAN
      DAVIDSONAPHAN elizabeth85938

      Posted

      Thanks ... I am a 33 yr old female ..... my shingles weren't bad i had a case where no rash was present and she gave me the prescription with refills if needed as she said can get quite painful... I have a high pain tolerance and didn't end up needing them ..... glad I researched before trying them thanks

    • jane14277
      jane14277 Sneakypete

      Posted

      I was told that I could just take one and it would help/stop the pain from a bulging disc that was pressing on a nerve. Well from everything I've read you can't just take one. Makes me so cranky

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