Pregabalin dangers

[gobojo]

I've just read a frightening article in the Times about the steep rise in deaths from pregabalin and gabapentin and about nightmare withdrawal symptoms.Has anyone else seen it? Any comments?

[SueJohnson]

Can you post a link to the article or indicate the full name of the paper since many have Times in their name.

I suspect the deaths are from overdoses which is not a problem with the amounts we take for RLS.

As for withdrawal if one does it slowly like 100 to 200 mg gabapentin or 25 mg pregabalin every 2 weeks one will have no withdrawal effects.

Ok - I just found it in the Times but I would have to subscribe to read it.

[gobojo in reply to SueJohnson]

The Sunday Times (England) 3rd March

[Madlegs1 in reply to gobojo]

Paywall.🙃

[Kaarina Administrator]

thetimes.co.uk/article/an-a...

[Joolsg]

bbc.co.uk/news/uk-wales-677...

A more balanced article.

Deaths have increased because pregabalin and gabapentin are being prescribed more and,as this article says, people are abusing it.

I was told by my adult children that pregabalin/gabapentin are being used to get a 'high' in the UK.

So, I think you can stop worrying. If anyone has been prescribed these drugs for RLS, the dose will be steady and the drugs are from a pharmacy ( not bought from dodgy street dealers).

[Bumble34]

Yes I`ve read it, a not unusual scare story, if you dig a bit deeper almost all the Deaths were caused by total misuse of Pregabalin combined with other Meds/Drugs, all at very high doses.

[gobojo in reply to Bumble34]

That's reassuring, thank you. A few weeks ago now I saw a neurologist who was horrified that I was taking Pregabalin and strongly suggested I should withdraw from it. I guess this article coming on top of that freaked me out. I panicked because I can't take DAs due to augmentation and I'm getting breakthrough with the dose of pregabalin I'm currently taking (225mg)

[Joolsg in reply to gobojo]

Direct your neurologist to the Mayo Clinic Algorithm, RLS UK website.If 225mg isn't helping, you may be a non responder. It's actually common after experiencing augmentation on dopamine agonists.

Make sure your serum ferritin is above 200ųg/L AND discuss long half life, low dose opioids ( methadone or Buprenorphine) for Refractory RLS.

Dr Winkelman's opioid register shows that patients stay on the same, low dose for decades and do NOT become addicted or develop tolerance ( needing to take higher doses to maintain the same cover).

[gobojo in reply to Joolsg]

Thank you for this, very helpful

[Keith1231 in reply to Joolsg]

Hi, I am now taking 225mg Pregabalin trying to find my ideal dose. I am also using co-dydramol 10mg/500, I have read here that it helps.

[antelope99 in reply to Joolsg]

Jools do you know if the non addiction apples to Targinact also.Unfortunately that is the only opioid Kings College will prescribe for me.

I am not taking it yet

[Joolsg in reply to antelope99]

According to Dr Winkelman's study and the RLS experts, opioid 'addiction' is rare in RLS patients. Unless there is a history of abuse, the study is showing that most patients do not crave higher doses to get a 'high' and tolerance is rare ( needing higher doses to achieve the same cover). That applies to Targinact as well.I spoke with a registrar at King's to ask WHY they won't prescribe Buprenorphine or methadone. He replied that they cannot prescribe any medication, so they rely on GPs to fill the prescription. Targinact is the only opioid specifically licensed for RLS in the UK, so GPs can easily prescribe it without risk of losing their licence. It's why we need a proper trial of Buprenorphine.

[antelope99 in reply to Joolsg]

Thank you Jools so helpful.Have you ever taken Targinact?

[Joolsg in reply to antelope99]

Not Targinact, which is Oxycontin with naloxone, to prevent opioid induced constipation. I took plain Oxycontin , 25mg for 5 years with 150mg pregabalin. Oxycontin just didn't work for me, probably because I took it 3 times a day. I suspect I needed it every 4 to 6 hours and was suffering mini opioid withdrawals, the main symptom of which is RLS. I still had VERY severe RLS, scoring 38/40 on the IRLS severity scale. I wish I had insisted on 30mg every 6 hours OR buprenorphine a lot sooner.

Many people do well on one dose of targinact a day, many on 2 doses a day, 12 hors apart. But there seem to be many who suffer mini opioid withdrawals.

It's the usual problem. We all react differently to meds.

I switched to buprenorphine and am now 0/40.

[gobojo in reply to Joolsg]

How did you manage to get a prescription for it?

[Joolsg in reply to gobojo]

It isn't red listed in my London Borough. But, I pestered Prof. Chaudhuri about it. He had refused an iron infusion, so I went directly toy local hospital with all the research evidence and they agreed to give me an infusion. It didn't work.I went back to Prof. Chaudhuri and eventually he sent me an email to say he had no objections to Buprenorphine, if my GP agreed to prescribe it.

Luckily my GP is young, female and admits she knows zero about RLS and is happy to read all the research I send to her. She gave me a 3 week trial and called me weekly to monitor.

As it instantly stopped ALL my RLS, day and night, she renewed the prescription.

The severe side effects of nausea were resolved by taking medical cannabis for 10 days, the high heart rate and opioid anxiety were resolved by adding a very small dose of pregabalin (25mg) and the head sweats were resolved by taking 10mg of cetirizine at night. They have reduced over the last 3 years as well.

Hopefully your GP can prescribe, if it's not red listed.

[gobojo in reply to Joolsg]

Really helpful thanks Joolsg. I'll look for the research and take it to my GP 🤞🤞🤞

[Tscrutton in reply to Joolsg]

Do you have a link to Dr Winklemans opioid register please so I can show my consultant

[Joolsg in reply to Tscrutton]

massgeneral.org/rls-registry

The study is now in its sixth year.

[Strike26]

Just a comment- if Gabapentin wasn’t available for those of us with extreme RLS, it almost certainly would lead to more tragedies than the relative few reported in the article (many of those due to misuse). If this report resulted in my meds being reduced or stopped , after the massive improvement in my quality of life that Gabapentin has given, I don’t like to even think what that might mean.

[Kashka23]

yes I had nightmare withdrawal from pregabalin. I’m bipolar but take meds for it. I was on pregabalin for neurological pain. I stopped suddenly unaware it was now known as addictive. It threw me into a two and a half month bipolar nightmare, the majority of which I cant remember. I had to go. Back on it and be taken off under go supervision over months. I had horrible withdrawal. I’d. put on 3 stone and I’m still fight to lose it. I still think sometimes one wouldn’t hurt. Though I don’t. The mark of true addiction. People I know who are homeless were shocked to know I was on it. They said it was a horrific drug

[Kashka23 in reply to Kashka23]

Oh and it caused full body restlessness not just RLS when withdrawing.

[SueJohnson in reply to Kashka23]

As I told you before, it is not addictive at the doses we use for RLS. And if one withdraws from it very slowly like 25 mg every 2 weeks, one will have NO withdrawal symptoms. I'm so sorry you went through that.

[Munroist]

I suspect people are very different in their reaction to it in the same way as they experience different side effects. There was a similar article in the Mail online (someone sent me the link!) and again many of the deaths were related to overdose and multiple drug interactions, some people taking a combinations of antidepressants, sleeping pills, opioids and pregabalin. However even on normal doses there will be people who don’t cope well with the drug in the same way that some people become dependent and addicted to alcohol, which can also lead to death. I found the effect quite similar to a small amount of alcohol when I took but didn’t experience any real problems either taking it or stopping it. I also found it was only prescribed after a number of consultations about nerve pain and sensations I was getting after a spine/disc problem.

[Grandy1962]

My daughter works with homeless people and people who have mental health problems and she tells me that both pregabalin and gabapentin are used as street drugs now. But people who abuse them usually take a whole strip in order to get high. As they are doing this several times a day usually they are taking a lot more than most people are being prescribed for medical use.

[PoorRichard in reply to Grandy1962]

Just curious: how many mg in a "whole strip"?

[Firenze1]

I'm unable to read the article as you have to subscribe however I would be very interested to see it. Pregabalin has changed my life in a very short time and I can't think of any reason why I would wish to stop taking it and go through the withdrawal process. Been there and done that with Ropinirole. My only concern is that I will need to take a higher dose in time but hopefully this will not be any time soon!

[Kaarina Administrator in reply to Firenze1]

The link to the article has been provided further up in this thread.

[Bramble2000]

It’s a non story. If people take them from some street seller, they run the risk of addiction and death. People who mix it with alcohol also run the risk of dying. If you take them as prescribed and have no problems with them, it’s fine.

[Simkin]

Have not seen that article but that is frightening since I am on gabapentin.Help!

[gobojo in reply to Simkin]

From reading all the comments on this site I would say we don't need to worry. I feel the same, I couldn't manage without Pregabalin, I'm pretty sure I could get to the stage of not wanting to live

[Simkin in reply to gobojo]

I will carry on as normal I think unless my GP flags up a "danger" but as lots of our forum are saying I think article is talking about "drug addiction".

[gobojo in reply to Simkin]

Yes, me too although my GP/neurologist says I shouldn't be taking it and wants me to change to Ropinirole which shows her total ignorance. Luckily this forum gives advice on where to find the information to challenge such ignorance!

[Simkin in reply to gobojo]

I agree. Even my GP now says " what do your forum advise" !!!

[gobojo in reply to Simkin]

🤣

[Joolsg in reply to Simkin]

Don't be worried. The article is clear that people are buying from the street, so it is probably mixed with other meds, and are abusing it to get a 'high'. They are mixing it with alcohol and other street drugs. If you are taking prescribed pregabalin and taking the same dose, you should not be concerned.

[gobojo in reply to Joolsg]

Thanks Jools, your support is SO much appreciated!

[LFIT in reply to Joolsg]

I have read the article also and it’s a very irresponsible headline designed to attract attention . If it started with words “Abuse of…” it would have been fine. The headline was suitable for the Mail or the Sun while the article was ok. I always thought the Times was a better quality newspaper than that.

[Bowie4eva]

Yes, I saw this too in the Times. I do remember being as high as a kite the very first day I took Pregabalin, but now that is settled (shame!). My MS consultant told me Pregabalin was 'well tolerated by the body'. I drink too, probably shouldn't but I do, and it all doesn't seem to have had any ill effect. The only bad thing is the putting on of weight, and the fact that my RLS - day as well as night - is still very bad and I am trying to persuade my neurologist to give me opioids (they seem very reluctant to do that here in the UK).

Sensible comments on here about addiction and od'ing.

Thank you all for the continued support, sharing of thoughts and good advice. I find it both helpful and comforting.

[Simkin in reply to Bowie4eva]

I am so relieved to hear that I am not the only one on this forum who has a glass of wine with my evening meal!

[Bowie4eva in reply to Simkin]

Ha!!! A glass or several!! Probably doesn't help the RLS, but needs must!

[Simkin in reply to Bowie4eva]

I agree. One of the pleasures of life!

[DogsCatsFamily in reply to Simkin]

I wish I could! It makes the RLS so bad it’s lie torturing myself, I SO MISS my evening glass or two of wine 🍷.

[Princegwyn]

This alarmed me as I've just started on 75mg of pregablin nightly. It's actually helping me sleep and reducing the amount of times I'm up in the night from 6 to 3. I'm needing shorter pacing times and less time with my massage gun to get back into bed and sleep, too.

RLS has been devastating for me. Far worse than any of my current MS symptoms.

I'm very drug averse so it's taken me time and encouragement from the lovely people here who have helped me. Articles like the BBC one are awful to read but my understanding is that most deaths are from abuse - which I don't intend to do.

Also regarding that article, how can people find out who takes it by watching the chemists? I usually get mine sent from the GP to the chemist then have them delivered but even when I've had a supplementary prescription that's needed to be taken to the chemist no one would know other than the chemist what I've been prescribed.

I took co-codamol (within my prescribed dose) for years. I was taken off them due to abuse (NOT mine) and given tramadol, which even on a low dose has been problematic for me.

I suffer severe back spasms, infrequently thankfully. I was prescribed diazepam by my neurologist. Now, instead of the spasm lasting 4-5 days with taking diazepam, they last a fortnight or more, leaving me in agony with every movement as my GP won't prescribe.

I know addicts can be easy to miss but honestly, a week's worth of diazepam every few years does not an addict make. I'm annoyed that I'm lumped in with addicts due to a genuine need.

[Beater]

Diazepam, pregabalin and every other medication that has been prescribed to me and never abused has injured me. I'm not a drug addict but thanks to the medical community I am now addicted to now 2 medications. With all due respect to the people that do find relief, many of us only find misery. I am bedridden 3 years now because of trying to safely wean off this stuff after very poor care after open heart surgery and make no mistake, beta blockers are very addictive too. They stopped me abruptly after telling them for 11 months that I could not tolerate them and then my even bigger hell began. Make no mistake that many people do indeed have withdrawl even when used as prescribed Some people have no issues at all. 25 mg a week reduction of pregabalin has made me so very sick and I still have 100mg to go. Dr.s need to be more informed about what they are prescribing and how they advise tapering.

[Hidden in reply to Beater]

I couldn't agree more with your last line Dr.s need to be more informed about what they are prescribing and how they advise tapering.