New report in about Lyrica: GPs to stop... - Restless Legs Syn...

Restless Legs Syndrome

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New report in about Lyrica

Frankiefocus profile image
19 Replies

GPs to stop prescribing Pregabalin/Lyrica, linked to 186 deaths in Northern Ireland.

Link-

belfasttelegraph.co.uk/news...

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Frankiefocus profile image
Frankiefocus
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19 Replies
Madlegs1 profile image
Madlegs1

Hidden behind a paywall. Typical Norners.🤓

Madlegs1 profile image
Madlegs1 in reply to Madlegs1

bbc.com/news/uk-northern-ir...

This one is from Mummy!😎 From 2019.

Just making it a class C drug.

But no one else is reporting the outright ban.

involuntarydancer profile image
involuntarydancer in reply to Madlegs1

I was under the impression that most 'drug deaths' in NI were caused by infections entering the knee-capping wounds inflicted by vigilantes on drug pushers and users.

involuntarydancer profile image
involuntarydancer in reply to involuntarydancer

Where is Raffs? His input is needed here.

Madlegs1 profile image
Madlegs1 in reply to involuntarydancer

I've just searched for Raffs ,but he doesn't seem to be in the system anymore.

Hopefully,he has just unsubscribed, rather than any worse outcome.

I miss him.

involuntarydancer profile image
involuntarydancer in reply to Madlegs1

I miss him too. I don't even want to think of a worse outcome than that he unsubscribed.

help3 profile image
help3 in reply to Madlegs1

last week my neurologist put me back on Lyrica 1 tab a nite 150 mg with 3 ropinole .5 mg this when i told him i wanted off ropinole. tried it one nite. went back to ropinole 2 per nite instead of 3 .third nite i went 1 per. lasted 3 nites no sleep. now back on ropinole. looking for new neurologist. like i replied before 1 low dose hydro and 3 per nite .25 ropinole worked for me better than all other meds i have tried last 9 months

Madlegs1 profile image
Madlegs1 in reply to help3

Still too much Rop. Don't be trying to go down too fast. Very slow and tiny doses is the key.

help3 profile image
help3 in reply to Madlegs1

OkThanks for info

Just want off ropinole

Not wanting to get hooked on lyrics

Joolsg profile image
Joolsg

Time to start campaigning in NI! No idea why access to certain treatments is so different but if I were in NI I'd be starting a campaign now.Pregabalin is used at much higher doses for pain relief and I know there's a big black market in it as some substance abusers use it to get high.

Pregabalin seems to help so many with RLS and it is one of a limited number of drugs that help.

If it's taken away, patients in NI will only have DAs ( to be avoided!) or low dose opioids. Totally unacceptable

Time to write in and join the campaign to get RLS taught properly to doctors. See the pinned post.

Typical newspaper slant on something taken out of context.

The ban is on initiating the use of pregabalin for neuropathic pain.

It doesn't mean that those already using it will be forcibly taken off it. Nor does it mean it's banned for other conditions such as RLS.

A similar measure was suggested in the new NICE guidelines for the management of chronic pain published earlier this year.

The suggested alternatives are an antidepressant such as amitriptyline, contraindicated for RLS.

I also note that the ban doesn't include gabapentin as is included in the NICE guidance.

It has been previously reported by the FDA that there have been a proportionally small number of deaths in which gabapentinoids are involved. These have been due to respiratory failure. Although they may have been mentioned on death certificates, this does mean the deaths have been a direct result of the drug. In the US, deaths have arisen due to respiratory distress used by the drugs in conjuction with central respiratory depression and/or the co-use of opiates.

Direct death from gabapentinoids seems to be associated with substance abuse.

I also wonder how the proportion of deaths from pregabalin in NI differs from other states or countries. Is it a particular problem for NI.

This article gives more detail

pulsetoday.co.uk

It seems a bit overdramatised to me.

Rachmaninov2 profile image
Rachmaninov2 in reply to

Could you clarify for me please Manerva. I have some pregabalin for neuropathic pain which I haven’t started taking yet, should I not take it?

in reply to Rachmaninov2

The choice is as always yours. You have to make these choices based on the best information you have.

the best information does not come from the "media", newspapers, youtube, facebook etc, it comes from academic journals.

Statistics can be misleading depending on how they're presented.

The Belfast telegraph article seems to be suggesting that 21% of all drug deaths in 2019 in NORTHERN IRELAND were from pregabalin which sounds a lot.

BUT

There may be deaths from other drugs, it seems a bit of a short list.

A more meaningful statistic would be how many deaths mentioned pregabalin on the death certificate in comparison to how many people are taking it.

E.g. is it 1 in 100, 1 in 1000 etc.?

Plus how many are taking it as a prescription drug and how many as a recreational drug. and what are the proportion of deaths in each.

I'd say if you don't suffer from central sleep apnoea, don't have COPD or anything else causing central respiratory depression and you're not prone to taking excessive doses of prescribed medicines in order to get a high then your risk is probably very low.

Rachmaninov2 profile image
Rachmaninov2 in reply to

Thank you very much for your informative and measured reply Manerva.

Munroist profile image
Munroist in reply to

Having used pregabalin for a year and benefitted from it this seems a worrying development. From my experience and discussions there were NOT many, if any, equally effective options as the article claims and we know from feedback here that different people react differently to the various drugs including gabapentin and pregabalin so it’s vital to keep options open. It’s not clear from the article whether the excessive deaths are related to addiction or abuse, but pregabalin it is used in lower doses for RLS than for neuropathic pain so I would’ve thought the risks were much lower. I feel sorry for those with really bad neuropathic pain because their lives have potentially just got harder.

Parminter profile image
Parminter

Wow, interesting figures indeed.

On the chart they include there are 77 deaths related to pregabalin, 15 to gabapentin (huge difference), and 16 related to methadone (That should interest anyone whose RLS drugs no longer work).The real eye-opener for me is Tramadol, which comes in at 33 deaths, twice as much as methadone. Wow, again, for all of you who are allowed Tramadol but not methadone.

Of course, they do not say how many patients were taking each drug, but nevertheless, it is a little startling.

Frankiefocus profile image
Frankiefocus in reply to Parminter

I have an old work colleague that still works in the passport office over here in N.Ireland that informed me that the death rate of accidental tramadol overdose in N.ireland has trebled over the last 10 years. This sort of news never gets to the public but doctors have no problem prescribing it for patience in severe pain. They need to educate people about the dangers of all this medication. The U.S has now a serious opiate problem and the U.K is now following.

Parminter profile image
Parminter in reply to Frankiefocus

I have found, in my rather long life, that doctors very often do not watch meds as carefully as they should. You may need two tablets of something-or-other, and you ask for two, but you get a pack of thirty.

Doctorplacebo profile image
Doctorplacebo

When I tried pregabalin for my RLS and insomnia it caused intense suicidal ideation; but I don't think suicide is the cause of the deaths they are listing.

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