To all Loopys out there. BEWARE PREGABALIN. Do your utmost to avoid this drug, its lethal.

[jayniey]

I have been on Pregabalin 300mg twice daily for over 8 years. Within a few days the side effects started. The pain relief was reasonable but I started getting these strands coming from my tear ducts, these developed into my skin and nails stringing and peeling away. Chest infections, COPD breathing difficulties, memory problems, dry eye problems, pain like you wouldn't believe, difficulty moving my arm (left one is paralysed), couldn't lift anything, chronic fatigue (exercise is trekking 10 yards to the loo followed by exhaustion),

Burning skin, all nerve endings screaming like a dentist touching a nerve in a tooth. It feels like a I have something constantly crawling all over my body (and I mean all over like being groped by something u can't see). Constant suicidal thoughts, insomnia, etc...

I withdrew slowly over a few months and today, 28 days without them the above effects r just starting to fade a bit. My rheumy put me on 10mg Amitriptyline once daily, increased to 20mg once daily 7 days ago. B4 that the withdrawal was multiplied by 10, like hell on earth. I (and the docs) thought that I was off my head and I was making plans on how to get to dignitas in Zurich (and I would have definitely gone). Research online into this drug was my lifesaver, its well known by docs to have horrendous side effects or none and they carefully forget to mention about withdrawal cos u may never lose them. There have been some people driven to attempt suicide cos it can send you off your head.

I'm sane though cos they made me see a shrink n she told me that I've still (just) got my marbles. Long live Harvey & Rabbit. I hope they show that ad again soon, I need something to make me smile. Love to all, ciao 4 now. J. XXXXX

[Sher78]

Jesus! Oh Jayniey, I really don't know what 2 say.

I had a few symptoms very similar when the lupus started 2 affect my cns & it was bad enough having those few, 4 the months that I had them but I gather u've suffered with these on top of all the other crap 4 a Hell of a lot longer than that, yet u've STILL sent encouraging messages & kind words 2 us on here. U really r made of some very strong stuff & I'm so pleased that all of these horrible symptoms r finally fading yet I find it distressing that u have had 2 go thru all this 4 so long!

Lupus can totally screw with u're head & send u round the pipe (as I know all too well) but some of the stuff they give u that is supposedly gonna make things a whole lot easier can make things so much worse, it's like being stuck between the Devil & the Deep Blue Sea.

Thank u SO much 4 being so honest & sharing this, I know that if this med is ever suggested as a help 4 me somewhere down the line I will more than likely b telling them 2 insert this med in2 1 of their OWN orifices of their choosing

U keep a tight reign on those marbles sweetie x

youtube.com/watch?v=20UhjXp...(Not working as expected?)

[jayniey in reply to Sher78]

Oh Sher, u really have made my day. I luv that dog. I've replayed it half a doz x so far. Currently, I only have a tablet n I'm not sure with that but I've bought myself a new laptop and am trying to persuade my step grandson to set it up 4 me (along with replacement humax and dvd/video recorder that I blew up recently). Then I've just got the hard bit, learning how to use (and more importantly remember) it.

Speak 2U soon. Love Jane. XXX

[sollyn in reply to Sher78]

HERE HERE! Would never have been able to put that so eloquently!

[Hidden]

Thank goodness you finally found a cause for those horrendous symptoms Jayney. I'm so pleased for you. I hope things continue to improve and eventually you get your life back at least a little bit.

[janiceray]

God bless.

We are here to help any time enjoy Harvey

x & Rabbit!!!

[Hidden]

Wow it's been hard 4 u well done all the docs shud test these drugs themselves see how it feels. Thanks for letting us all know its great help I seem to be very sensitive to a lot of drus and will certainly list that one to avoid. Keep going there is a light at the end of the tunnel & let's know how u get on good luck

[katknapp]

Can i ask did it affect your eyesight?x

[jayniey in reply to katknapp]

Most definitely, yes, yes and yes again. Blurred, painful and v often streaming. It feels like the skin all over tne body (incl mouth, eyes, ears and nose) is on the wander. 'Orrible! I currently have very swollen feet n ankles with wide red welts going up the legs as though something is tightly wrapped round them. Makes it painful to do my daily exercise (get to the loo).

Hope this helps. Love J. X

[Purpletop]

These are fantastic news!!! I only took pregabalin for two days before I stopped because I didn't like how it made me feel, completely vacant. What an awful experience you've had with those and how wonderful that you've identified the culprit and you're now coming back to your normal self. Well done, you must be over the moon!!

[jayniey in reply to Purpletop]

I will be when I'm hopefully back to my usual fruitcake (with added nuts).

I went back to what meds I was on when all the s**t started an Pregabalin was the only one that was new to me. I did some research and theres some pretty frightening stuff. So I say, AVOID AVOID. Love J. X

[letslaugh63]

Glad your on the mend jayniey and I will say this again I don't know what scares me more I might have lupus or if I have the doctors

[mstr]

Please to hear you are on the mend. Yay and yuk to the yucky pregrabalin x

[hazelHollingsworth]

THANK YOU so much for having the guts to share your frightning experiances with us to warn us. I hope you go from Strength to strength and start to get your live back.xxxx

[jayniey]

Thanks to all who have so kindly replied. Sorry I'm not replying to all individually but my fingertips are still very sore n 2 nails have split in half this morning.

Love J. X

[Fibronut]

I have been diagnosed with fibromyalgia (2011) this is added to my osteo-arthritis,high blood pressure and sciatica. I have also been told that I have Lupus anti-bodies even though Idon't have Lupus. I was started on Gabapentin,this did nothing for my pain(300mg x 3 daily), now they have started me on Pregabalin( 75mg x 2 daily building up to 300mg x 2 daily) this seems to be doing nothing either.I am in constant pain,24-7, trouble concentrating,having to think of my words so I can say them,sleep does nothing, I can wake up more tired(does that make sense?) , have no energy. Nobody seems to understand just how bl**dy sore I am. Is there any hope or is this it ?

[stretch]

hey jayniey

i share the same experience as you regarding wanting to go to dignitas.

i was not "suicidal" as such,but was in a state of euthanasia.did you have

thoughts like "would not let a pet suffer this"? etcetra. it is truly horrible

trying to desperately find something to be alive for. i have survived undiagnosed and

therefore with zero prescribed medications for over 20 years.you can guess

why so long im sure..dismissive,arrogant,ignorant,unknowledgable doctors

plus i was pigeonholed as psychiatric. anyway i am interested that you

suffered a lot of things that i have. do you think that what you describe could be all lupus symptoms that were being prevented from happening whilst taking the medication,but came back with avengance when you withdrew from the medication? what happened during the 8 years ? i know it is so hard to make sense of trying to tell what is happening . you are very strong and brave.when i found out from this site that i had all of the classic symptoms and seeing that the experiences of the medications are not good,i decided to look online for natural and none chemical meds. on youtube a girl is virtually cured by drinking a shot of blended marijuana plants every day.totally safe as it is only when it is smoked that it becomes a drug to get "high" from. also cannabis oil in capsules looks good.i don't trust drug companies at all,but because they cannot make money from the natural remedies WE don't get it from our health system.by the way i have naturally been in a very slow remission for 6 years now..i am no longer thinking of death and i am getting stronger within myself...right now i am in a flare,but it is like a tenth of what it used to be like, with MUCH less suffering of symptoms intensity. THERE IS HOPE !!! :- ) if i find a cure for myself i will definitely get back here to help each and everyone of the amazing survivors on here (and those who arrive here daily) .i believe it can be cured..but not by chemical medications. here is a positive thought.a doctor described it as the bodies "friendly fire".....that sounds so much better than "attacking the body" : - ) catch you in here again bab x

[jayniey in reply to stretch]

Stretch n fibronut, sorry 2B answering both at once, but the withdrawal is back with a vengeance this am. My skin feels like its being pulled off, both inside n out. It feels ten x worse today. Fingernail fell off this am. This is v different to any symptoms I've had previously before pregabalin. J. X

[copdber]

This has frightened me I'm on 300 x3 daily have been for the past 3 years.

[jayniey in reply to copdber]

Check out some of the sites on pregabalin. It does work for some people with no problems, but then u get nutters like me. If it works 4 u good luck. Also check out about pregabalin withdrawal, just in case they take u off it. If u do come off do it as slowly as poss and by smallest amounts. Should make it a bit easier. Hope this helps.

[copdber]

Thanks jayniey, I don't have any probs on it sometimes feel a bit groggy but then that could be put down to lupus or fibro I have both.

[jayniey in reply to copdber]

I'm really glad that they work for u. Good luck. Love J. XX