Pregabalin ?

[Calm2]

Not sure which place to post this as it’s not really connected to heart or thyroid etc. My question is has anyone had the drug pregabalin? It’s something I am going to try for nerve pain in my leg. Not to keen when reading side effects but would love to find out if anyone else is on it? Should mention I have CKD ( well I did but recent test came back normal? Another mystery. Maybe someone can advise me where the best place to post this would be?

[bumblebee_tuna]

I believe the drug is toxic to the kidneys at higher doses, you might want to check that. It is a very common drug to be given to people on dialysis, usually for itchy skin, it works by desensitizing the nerve signals - a lot better option for pain than opioids etc that work on the brain signaling.

I take it for a condition called Restless Legs Syndrome, for pain, probably the dose has to be higher. There are some side effects but tolerable for the benefits it provides.

[CatOnACloud]

I take it for my fibromyalgia pain. Theres only3-4 drugs for fibro pain, and I was out of options because I did not want to try this. It works for the fibro pain, at 200mg a day, but not for any of my neuropathy pain from my back, sciatica, stenosis, goes down my leg. Got more than that too but it does help the fibro pain which is nice. Hmmm I hadn't heard it was bad for the kidney but seems like everything is these days I'll have to research that 😬

[Monkey_gir34]

Hello. I take pregabalin for neuropathy in my feet from diabetes. I have been advised to change meds, as bad for kidney (ckd3) and starting to transition to nortriptyline, as that's easier on kidney function.

[Calm2 in reply to Monkey_gir34]

Yes that is also what concerned me as I just found out I have CKD but that blood test recently was normal??? I’m lost 😞

[Monkey_gir34 in reply to Calm2]

Kidney function can be improved, so ckd fluctuations is normal. It can be greatly affected by hydration at the time of the test, so always drink plenty beforehand. If ckd is well managed, thry will gibe some drugs that are Contra indicated, under supervision. If you are worried, I would try to establish if any other drugs would be a better fit foe you x

[galesr]

Just read nortriptyline is for depression not pain.

[Partner20 in reply to galesr]

It is actually prescribed for nerve pain, but can be used to treat depression too.

[galesr in reply to Partner20]

Check it out. For depression. Can't help nerve pain. Does it for you?

[Calm2 in reply to galesr]

Hi, it apparently works for epilepsy, depression and anxiety and also as a pain killer. I am also on amitriptyline which works as anti anxiety and pain relief, sounds weird I know but that’s what the leaflet says😏

[FiHut in reply to galesr]

It works in the same way as amitriptyline and that is also a anti depressant

[WardijaWardija in reply to galesr]

It works for both (supposedly).It did nothing for my diabetic neuropathy but frankly nothing works for nerve pain, I've pretty much tried them all, apart from the ones that are toxic for the kidneys . . . It's miserable !!

I've also got CKD III, 2 activeve Heart conditions, including 3 Stents, Osteoarthritis, and insulin dependent Diabetes, Fybromyalgia, and ive had 2 TIA's.

Not to mention the cherry on the cake, Depression, which is hardly surprising. . .

[Calm2 in reply to WardijaWardija]

Yes I’m on Amitriptyline and it works on both apparently, hasn’t helped my nerve pain though. Yes it is miserable

[WardijaWardija in reply to Calm2]

Yes, me too been on the Amytriptyline. Its rubbish, total myth.I take Tramodol, which does nothing for the nerve pain but at least knocks me out, so I can sleep for a few hours !! My thoughts are with you.

🙏🙏

[Adlon57]

In June 2017 out of the blue, a Doctor from my local hospital diagnosed me with pregabalin presumably for my epilepsy, but I have a colourful collection of medical conditions, after a couple of years without a neurologist 2013, I had just been prescribed with Fycompa for the epilepsy by a specialist, this doctor put me straight onto pregabalin without seemingly any knowledge of my medical records? The pain especially around my joints was unbearable, I took myself off them. Within a month I had attempted suicide, twice, probably because of this episode! I have had epilepsy since 1970, that Fycompa, easily the worst epilepsy medication I have EVER had [the pregabalin not to be recommended!] I have osteoarthritis, Schwannomatosis NF3, diabetes 2 and osteoporosis into the pot as well!

[WardijaWardija in reply to Adlon57]

I'm so sad to read this. I have multiple life-limiting co-morbidities also, so I understand your way of thinking, I've been there too, to some very dark and lonely places 🖤.However, I'm still here, just about ticking over here on my own. All I have now is the unconditional love of my dog, and that's what I believe keeps me going.

Do you have any support ?

🙏🙏🙏

[jodaer in reply to WardijaWardija]

I've read that gabapentin might cause one to commit or try to commit suicide

[WardijaWardija in reply to jodaer]

OMG ! That's why I always do my research. I've never been offered Gabapentin, probably because of my kidneys . . One small mercy from having CKD I guess . .

🙏

[jodaer in reply to WardijaWardija]

Well, after all this I saw my pcp today and I'm going to try it. It's a last resort

[WardijaWardija in reply to jodaer]

Good luck. Please keep us posted.I really hope it helps you and no nasty side-effects 🙏

[Adlon57 in reply to WardijaWardija]

Have my sister just around the corner, other than that and HU that's about it!

[Bunkin]

I was given it after my transplant. I have really bad Berber pain. It didn’t do me much good so I took myself off.

[OldTownhammock in reply to Bunkin]

My doc told me not to stop cold if you have taken it for more than 2 weeks

[74years]

I am 75y/o female. Diagnosed cdk3a non diabetic. I have bilateral peripheral neuropathy cause unknown therefore ideopathic. Eventually was prescribed Gabapentin worked upp to a massive 3200 mg daily and absolutely nothing worked. One year ago this month I received a spinal cord stimulator implant I got about 80% reduction in pain my PMS suggested Pregabalin I have achieved many pain free days fewer days with pain and am sure I will probably take the Pregabalin fot the rest of my life

Good luck on your journey Any questions I am here

[bumblebee_tuna in reply to 74years]

So Gabapentin did nothing but Pregabalin worked? that's interesting those are very similar drugs. I started with Gabapentin but didn't like the side effects at all, I don't remember what they were exactly, but they were pretty bad (I think maybe Nausea).

I think most people start with Gabapentin because it's a cheaper drug. I am on an extended release version of Lyrica, I take it once a day.

[74years in reply to bumblebee_tuna]

Gabapentin was never able to stop the burning. Nerve pain is impossible to treat. No medication is able to successfully treat nerve pain long term

The spinal cord stimulator implant does not cure neuropathy but provides a distraction. I waited too long Wish I had done this years ago Chronic pain is a brutal beast

[WardijaWardija in reply to 74years]

No kidding, its the worst ☹️

[OldTownhammock in reply to bumblebee_tuna]

Lyrica is pregab

[bumblebee_tuna in reply to OldTownhammock]

Yes

[NurseRed]

I am on dialysis and take preglabin only thing thats helped my neuropathy

[MinnadeParis]

Hi there, I was on Pregabalin for pain after an auto accident. Took it for about 1 yr

Don’t take it. It did little to nothing for pain and that Dr kept uping the dosage. Since I still had pain I took Aleve along side and the Dr knew. Fast forward a couple of years CKD. I have no underlying

I recently had bad leg pain for 6 months, and tried a lot of self care (OTC lidocaine patches, freeze-on(?) thermacare, rollers, TENS, ice, heat, stretching). Then I went to our local orthopedic group, that I trust. It was bursitis in my outer thigh. Got a cortisone shot (approved by my nephrologist) and 2 days later I’m fine.

So research your options before you take additional meds.

Good luck

[OldTownhammock]

My husband takes pregab for neuropathy due to 3 different chemotherapies. Stage 4 bladder cancer and now he has been clear. Anyway his side effects are not bothersome. Good luck

[FiHut]

It is not a drug to mess about with Pregabalin almost killed me by causing a hypoxic event when I stopped breathing which with a life changing ABI with a similar effect to dementia by destroying most of my cognitive abilities but it was given by a doctor in hospital where I was being treated for Sepsis - they had been given my repeat prescription form and gave it to me when I was too ill to realise. I had only taken it for one day when the side-effects were horrendous including hallucinations and absolute exhaustion so please be careful!

[Calm2 in reply to FiHut]

Oh my sounds horrendous! I have already submitted an e consult to drs requesting they look at giving me something else as I most definitely will not be taking it. What a terrible experience for you 😞

[FiHut in reply to Calm2]

Like so many people with chronic disease you are literally a bother to doctors - I now know that when he gave the ambulance my repeat prescription he told them about it but it can't have reached the wards and I was too ill to fight - I had sepsis after all and if I wanted to make light of it some of the hallucinations I had taking it because they were unreal - it didn't agree with me and now I need a carer, I have not been able to work and so we are struggling but don't qualify for help, My husband shouldn't have to be dealing with this and worse of all I can't be be independent with my grandchildren and worse of all as my brain is aging, as it should this has added to the cognitive element of the brain injury and people expect to hear that it is some kind of dementia I have - how do you make a brain injury sound serious enough. Pregabalin is a drug that works for lots of people but it can also have horrendous side effects for others just stay aware of the side-effects and question your doctor more - easy to hand out drugs to get the patient out of the surgery!

[Calm2 in reply to FiHut]

Oh how awful for you. I am glad I put up my post now as I am now certainly not going to take it. I have an appt with Gp next week and I am grateful to all who have ‘warned’ me what could happen with this drug. X

[thisismaya]

Hi Calm2

I'm sorry you are having nerve pain in your leg.

Maybe you can raised this question on a new health platform called HExSOS. It brings users and healthcare professionals together to share experiences on key health topics, so that people can make more informed health decisions.

There is a mystery symptoms page where individuals can post about their problems or symptoms they are not sure of.

hexsos.com/channels/b3d5629...

I hope you find it helpful.

[Calm2 in reply to thisismaya]

Hi thank you for that I will give it a go 😊