Coming off pregabalin: I have been... - Fibromyalgia Acti...

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Coming off pregabalin

Coffeemum profile image
9 Replies

I have been thinking of coming off pregabalin. I have been on it now for 2 years and has only really helped me sleep at night. I take 300mg in the morning and 300mg at 6pm.i now take codeine in a morning as the pain is just unbearable but it does actually help me, I still get shocks in my feet and wrists and pregabalin does not stop the tremors that I have in legs, hands, arms and neck. I'm scared of coming off this medication mainly because of the lack of sleep that I used to experience. Does anyone have any advice on how I go about coming off this medication and what I can do about sleep, I have tried amitryptalin and it did not work. I just want to have a plan of action ready before I ring my gp, as they haven't got a clue. Many thanks 🤞🏻

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Coffeemum
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9 Replies
CM1EDSUK profile image
CM1EDSUK

Hi - I appreciate your dilemma, however you shouldn't stop Pregabalin unless your GP advises this.

The following may help as regards your sleep: mind.org.uk/information-sup...

Jacjai profile image
Jacjai

You have to be very careful coming off pregabalin, it's was the the worst experience for me. I was on 600mg for about a year and noticed if I'd miss a dose I would be in tremendous pain.

I question myself are these medication making my fibromyalgia worse.

It's took me 6 weeks to taper from them but the last 25mg was the worst (coming off them completely)

It's been 3 years now my fibromyalgia has never been that painful when taking pregabalin, did make me wonder the medication did contribute more pain then normal.

I take tramadol SR (slow release) one morning and one before bed and I'm managing pretty well to be fair.

I wouldn't try anything different these days I just have to learn to cope as best as I can.

Good luck

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Jacjai

If you feel more pain when you stop taking something, then that something "helps" with pain, not "contributes" to pain.

Jacjai profile image
Jacjai in reply to LisaSnow

Side effects does cause more pain, if you're withdrawal from any medication especially one for pain it will cause more pain until it out of your system.

Sparklingsunshine profile image
Sparklingsunshine in reply to Jacjai

Sometimes a painkiller doesnt help at best and at worst gives you bad side effects. I was on Zomorph, slow release morphine for years. Still has lots of pain and the morphine made me sick, dozy and very itchy and flushed. I'm actually intolerant to it. My Rheumatologist was the one who gently queried whether it was actually doing anything. I think we often rely on our meds emotionally as much as physically. I weaned off it and felt better. I dont use any Fibro meds anymore.

AvidReader2021 profile image
AvidReader2021

Hello. I came off pregabalin over the summer this year after taking it for a little over 18 months. I reduced my dose gradually over about three months - I took it at my own pace when I felt ready to reduce further. However, I was taking half your dose to begin with so your journey might be different to mine.

I did notice a difference in sleep towards the end which was difficult (when my dose was very low and then when I was completely off the medication) but my body has seemed to adjust after a while.

My reason for coming off pregabalin was because it was making me feel increasingly hazy so I’m currently not taking any other medication while I see how I get on (potentially a bit better than expected/feared at the moment).

Perhaps other people can advise on alternative medication options - I’ve only tried pregabalin.

Wishing you all the best,

Louise

Cat00 profile image
Cat00

I came off Pregablin to conceive, carry and breastfeed my 1st first born. It's only then I realized it hadn't been making much difference anyway so I didn't go back on it. It also made me put on a lot of weight so I wouldn't go back on it for that reason too. I ignored the doctors advice and gave myself 2 months to slowly come off it as in the past they gave me 2 weeks and that was extremely unpleasant. I did the same for Gabapentin too. I found as long as you do it slowly it's absolutely fine.

Scatty27 profile image
Scatty27

Hi Coffeemum. I was taking pregablin up until recently. I found it only helped a little - took 75 at night and 50 in morning. So fed up with the general practitioner just dishing out more and more medication that barely helped so 3 months ago I went to see a nutritionist/ kinesiologist and what she prescribed has helped me massively. So much so that I’ve come off 3 lots of medication and feel like I’ve got my life back! Obviously everyone is different and what has helped me might not work for others but I am taking a supplement from the Natural Dispensary called MSM Organic Sulphur 1000 mg 60’s.

flashyman profile image
flashyman

Hi there I'm on pregablin but 200mg doses twice a day. I've worked my way up to that as my gp just upped it bit by bit but i'm finding it a waste of time. Just not doing anything for the pain. Going to see about being weened off them. Been on Gabapentin before but all that did for me was put me to sleep. The best drug I had prescribed was Tramadol but a new student doctor prescribed them for me and didn't give me any directions and I just went straight into the 2 tablets 4 times a day. And I felt great in fact too great. I was hallucinating and when I saw my doctor she had had a letter from my neurologist advising Gabapentin or Pregablin. You just wonder if they know what they are doing/prescribing. But I'm also on Duloxitine which I find Helps me sleep. It blanks my mind as I'm not thinking about anything. Good luck

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