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Restless Legs Syndrome

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Pregabalin and Gabapentin

Hoochybaby profile image
Hoochybaby

Just read a very disturbing article in the daily mail regarding the above two drugs.

The ex Olympic swimmer Sharon Davis issued a warning about the long term use of these drugs and the horrible side effects they cause

Too long to describe the full effects but basically these drugs should only be used short term they have been used for anxiety and other conditions as well as restless legs syndrome

I personally have been on them for two year and have suffered from the side effects. In the article

Prescribed for my rls they were put on repeat prescription when apparently they should never had been issued as such by my gp whose knowledge seems to be almost non existent

I advise everyone on theses drugs to read the article

37 Replies

Can you give a link to it.

Hoochybaby profile image
Hoochybaby in reply to Manerva

Not sure how to do the link I read it in the daily Mail newspaper

Manerva profile image
Manerva in reply to Hoochybaby

I never read newspapers, reality is different depending on which one you read.

Bumble34 profile image
Bumble34 in reply to Manerva

Well I have read the article, it`s a familiar theme, a famous face has a bad reaction to a medication and feels as a consequence that no one should ever be prescribed it, RLS gets one mention as a condition in a quite lengthy article, Sharon Davies does obviously have problems she had been on Citalopram for 7years, was transferred to Pregabalin and ended up on 600mg a day after two years.

WideBody profile image
WideBody in reply to Bumble34

600mg of pregabalin is a LOT of pregabalin. I take 300mg a day and I want/need to reduce mine. I am not an athlete but I am sure I outweigh Sharron.

marsha2306 profile image
marsha2306 in reply to Bumble34

Citalopram makes RLS worse.

Parminter profile image
Parminter in reply to Manerva

dailymail.co.uk/health/arti...

Everyone is different, I had the same experience and still suffer nearly 2 years after finishing pregablin.

I cannot explain how it almost ruined my life but my experience is not necessary the same for everyone.

My only advice is if you are coming off it then make sure you are engaged with your gp and local talking services to support you.

I took it for nerve pain medication when I had my C7 replaced.

When asked if it helped my only response was it helped with my RLS but for ME I couldn’t cope with the brain fog the mood changes the shakes the list goes on.

I have primary RLS it’s anyways verb with me even as a small child.

I’ve spoken to my gp’s about it since the 90,s and they always advised there was help but warned me the drugs used are for many other treatments including Epilepsy

Parminter profile image
Parminter in reply to Manerva

dailymail.co.uk/health/arti...

Manerva profile image
Manerva in reply to Parminter

Thanks

Parminter profile image
Parminter in reply to Manerva

piecebusiness.com/hooked-on...

Everyone is different, I had the same experience and still suffer nearly 2 years after finishing pregablin.

I cannot explain how it almost ruined my life but my experience is not necessary the same for everyone.

My only advice is if you are coming off it then make sure you are engaged with your gp and local talking services to support you.

I took it for nerve pain medication when I had my C7 replaced.

When asked if it helped my only response was it helped with my RLS but for ME I couldn’t cope with the brain fog the mood changes the shakes the list goes on.

I have primary RLS it’s anyways verb with me even as a small child.

I’ve spoken to my gp’s about it since the 90,s and they always advised there was help but warned me the drugs used are for many other treatments including Epilepsy and Parkinson.

Following advice on here from many other sufferers I am lucky I have found ways of managing it so it’s only really bad a few nights a week.

I take liquid natural iron with vitamin c already in it EVERY OTHER DAY and it’s the first thing I take.

Then my normal pain meds

Full recommend dose of omega 3 (this helps with so much not sure if it’s good for RLS but for me it does not trigger it.

I also take Turmeric

May I ask how long you were on the Pregabalin, and what the dose was before you started experiencing side effects? And could you mention all of your side effects?I wish to gather evidence of all the side effects that I can, from a variety of patient sources, not only from RLS sufferers.

It does seem like a very problematic drug.

I'm glad you appear to be managing yor RLS without resorting to a gabapentinoid. They are nasty drugs in many ways. I am envious.

I was amused by your comment "they always advised there was help but warned me the drugs used are for many other treatments including Epilepsy and Parkinson".

I can't see why the fact that drugs are used for other things should be a "warning". So I can't use paracetamol for pain because it's also used for bringing a temperature down?

I presume they were also talking about the dopamine agonists, used for RLS, because they are used for Parkinsons. Gabapentioids are not.

I assume the same applies to opioids, i.e. painkillers.

So for those who need to take a medicine for their RLS that doesn't leave many options.

Sorry just to have a little rant there.

Hi UnitedKingdom, thanks for sharing.

Can I ask what brand of liquid iron are you using and where did you get it?

Regards

Where’s the article ?

Parminter profile image
Parminter in reply to RCHD

I posted it above. It came up three times! Sorry to annoy.

RCHD profile image
RCHD in reply to Parminter

The link unfortunately didn’t work for me 🙏🏾

The ex Olympic swimmer is Sharron Davies, not this lady. Not that it matters in the context of the article but there you go.

Manerva profile image
Manerva in reply to AmyMac5

Well spotted!

I would say that if you are experiencing 'horrendous side effects' you should not continue taking it for two years, far less allow the dose to be increased. I personally couldn't tolerate Gabapentin at all and stopped it within days. As has been said many time we are all different.

Everyone is different, I had the same experience and still suffer nearly 2 years after finishing pregablin.

I cannot explain how it almost ruined my life but my experience is not necessary the same for everyone.

My only advice is if you are coming off it then make sure you are engaged with your gp and local talking services to support you.

I took it for nerve pain medication when I had my C7 replaced. I read up and there was new evidence at the time it might help with RLS so I thought boom two problems one pill my maximum dose was 3 x 200 mg daily.

When asked if it helped my only response was it helped with my RLS but for ME I couldn’t cope with the brain fog the mood changes the shakes the list goes on.

I have primary RLS it’s always been with me even as a small child.

I’ve spoken to my gp’s about it since the 90,s and they always advised there was help but warned me the drugs used are for many other treatments including Epilepsy and Parkinson. So I have never taken it further with my gp’s

Following advice on here from many other sufferers I am lucky I have found ways of managing it so it’s only really bad a few nights a week.

I take liquid natural iron with vitamin c already in it EVERY OTHER DAY and it’s the first thing I take.

Then my normal pain meds

Full recommend dose of omega 3 (this helps with so much not sure if it’s good for RLS but for me it does not trigger it.

I also take Turmeric twice a day (again this is for inflammation but doesn’t make it worse for me and there is some evidence I believe that RSL can be linked to inflammation. But I do take it for Arthritis not RLS.

At night I take around 8pm a Calcium vitamin d zinc Magnesium combination (this is for cardiovascular HMC but also for RLS for me.

I use headspace other meditation. To get off to sleep or when I can’t sleep.

Personally some nights I wish I did try some of the other options but then I read of more side effects.

But the important thing is we are all different and remember we are most likely to find negative information if we look for it. I do believe if prescribed right and supervised that any early signs of it not being the right choice for you that you are helped off it.

If you are coming off of please go slowly and seek advice on the best way.

Good luck Clare

I think pregabalin can be useful in the right circumstances and specifically for neuropathic pain which I believe is the main reason it should be prescribed. I took pregabalin for a year for nerve issues (odd sensations and discomfort) following a back problem and it proved a useful aid for recovery. On doctors advice I started slowly at small doses and only increased when I was comfortable with the current dose and never got over 300 mg a day. The prescribing nurse was careful to inform me of some of the possible side-effects, notably a slight drunk feeling which you soon get used it or it disappears but you need to be careful with alcohol as they have similar effects. The other slight side effects I noticed were a very occasional “catch” as I initiated a sentence or conversation a bit like a stutter, and I did increase weight slightly but nothing unusual and I suspect the weight gain is as much about a relaxed attitude to food as anything else. The drug helped reduce my symptoms and the anti anxiety effect was very useful in enabling me to look at my situation objectively and realise that it was manageable. It did help with the restless legs but it certainly didn’t get rid of it completely, and having come off it now, they are if anything slightly worse although that could be the natural progression as I age. I’m glad I came off it and I could feel my mind sharper afterwards. For me it didn’t seem addictive, although I did worry when I came off it that I would lose the benefits and end up in discomfort again, but I also felt the same way about ibuprofen at one point which I was taking too much and gave me stomach problems - I don’t think addiction is the same as not wanting to go back into pain. I also reduced the drug very slowly over a period of a few months so I could understand how much I changed at each stage and I think that was a good idea. My RLS is not at the stage yet where my sleep is so bad that I need to take medication, but I expect it may one-day get to that point and at the moment of the available medications pregabalin seems to be the least harmful, but I completely agree you need to be careful and take it slowly.

I have to say though the Daily Mail article seemed well written with a lot of good information and the main thrust was pregabalin is being too quickly prescribed for anxiety which does seem to be the case. My response was mainly to say that it can be helpful in certain circumstances and is not always a bad experience.

Hoochy, may I ask which side effects you suffered from? And are you still on them?

Hoochybaby profile image
Hoochybaby in reply to Parminter

Hi my side effects are mainly dizzyness and a feeling of being spaced out coupled with tiredness and insomnia

This is not THE Sharon Davis.

What the FDA says about the gabapentinoids

"All medicines have side effects even when used correctly as prescribed, but in general the benefits of taking a medicine outweigh these risks. It is important to know that people respond differently to all medicines depending on their health, other medicines they are taking, the diseases they have, genetics, and many other factors. As a result, we cannot determine the likelihood that someone will experience these side effects when taking gabapentinoids."

I confess to reading the article, although I prefer to stick to one reality not the many alternatives the media ty to present us with.

This is one person's view and as such, as any researcher would tell you is statistically insignificant, or simply put, doesn't prove anything.

I would agree with the article in some respects, prescribing pregabalin for anxiety seems inappropriate. Prescribing anything long term for anxiety, in most cases seems inappropriate.

Common sense, (a rare commodity), would suggest that if as an individual you expereince that the side effects are worse than the RLS, then you'd stop taking a gabapentinoid, or any other drug.

For RLS specifically, what are the alternatives and are they any less risky?

I agree everyone is different. In my case at 800 mg it has completely eliminated my restless legs. I actually take 1400 mg to eliminate the pain in the front of my thighs so I can sleep at night (I sleep on my stomach), but most people don't have this problem. The only side effects I have are sleepiness during the day and a very very slight amount of dizziness which I am hoping will go away as I get used to the dose.

I was put on Ropinirol (1mg pd) and Gabapentin (300mg) by a specialist. Perhaps Gabapentin is okay at low levels as I haven't had any problems. I'm also on antidepressants (Citalopram) so maybe this counteracts any side effects. TBH I absolutely cannot cope with RLS (as all of us) so I'd rather continue than come off my meds and suffer mental problems and lack of sleep.

Citalopram like virtually all antidpressants but especially SSRIs, (such as citalopram) will not counteract most side effects of gabapentin unless the gabapentin causes depression.

However, it will make your RLS worse.

Therefore although the ropinirole and gabapentin may be acting to relieve your RLS, the citalopram will be doing the opposite.

If you've never taken a dopamine agonist (e.g. ropinirole) before, I hope the specialist warned you of the major complications these drugs can cause.

It is wise to be aware of the potential side effects of any RX.

That being said, I hope this does not lead to an extreme pendulum swing like we have seen with other drugs. Some people receive much needed relief, and they should not be shamed or otherwise have the rug pulled out from under them because suddenly their physician is nervous about liability. I'm very tired of this happening to patients.

Just my $.02

It’s the same old story ( and I’m long in the tooth enough to have witnessed many of these wonder drugs turned problems over my years as a GP.Problem is that no one realises at first & the only way to find out about long term is for the long term to happen. No trials or frequent monitoring will pick this up at first.

I think the newspapers have a definite place to play in these alerts & the folk who read them could be very grateful so thank you.

I remember the days before benzodiazepines were recognised to be a problem. I remember Pregabalin & gabapebtin being brought out for epilepsy then nerve pain & then other effects were noted which seemed beneficial at first.

Distressed people beg for help & drs succumb to this begging.

As I’ve said before Pregabalin was like a wonder drug for me for RLS & then it stopped working & was awful to come off.

We all beg for help & complain like mad if drs don’t appear to care or help & then complain like mad when unrecognised problems arise.

I am grateful for all alerts.

I am also aware that Medicine doesn’t yet have all the answers ( will it ever? ), all medicines need to be treated with the utmost respect & open minds & some of us are stuck with being ‘faulty machines’ with the best will in the world & as I try to tell myself every night as I writhe about.

This is a generic reply to your post & the many replies & I thank you for your post

Thanks Alison 7 I sometimes think that people on this forum will think I’m an old moaner but rls is such an insidious disease that any help we can get from each other is always welcome

Alison7 profile image
Alison7 in reply to Hoochybaby

None of us are moaners or think others on this site are moaners. It’s a horrible affliction. In its mild form it’s a nuisance. In it’s very severe form it is truly life changing and a complete b.,,,,,. ( fill in whatever blanks you like! ). I just am hoping that before I sniff it someone will have worked out the answer & I’ll get a few years of peace.

I’ve been taking Gabapentin for about 5 years to RLS and nerve pain. Never had any side effects.

You don t have to be on them long term to cause problems it happened to me in a couple of days. Too many to mention here . Eyes though still affected a year later following complete sudden loss of sight for five days.

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