Gabapentin augmentation??

[rlsagain]

Hi you lovely people.

At the end of April I reduced gabapentin from 1200mg to 900 mg (because of the brain fog, wooziness and balance problems I was experiencing) to 300mg gabapentin at 9pm then 600mg at around 11 pm. I also take 250mg magnesium in the mornings and 28mg iron at night on an empty stomach with some orange juice.

This dose has served me reasonably well for the past few months, with only mild symptoms during the night, which I can put up with by just getting up and walking around for just five minutes or so, although I hate the side effects of weight gain and wooziness the following day, finding it hard to function much before 10 am. Luckily I’m retired but I do resent wasting so much of the morning dozing.

However, I now wonder if I’m suffering from gabapentin augmentation as for the past three nights I’ve only had a couple of hours sleep before waking with my legs and arms going crazy and needing to walk around and swing my arms for half an hour or so before the RLS subsides enough for me to return to bed, sleep fitfully for another couple of hours, then repeat…

If it’s not augmentation, can anyone explain why my symptoms are worsening, please?

Many thanks for all the helpful advice on this forum.

[SueJohnson]

One does not suffer from augmentation on gabapentin. You can develop tolerance and need more but that usually is the case after a number of years on it. Have you changed anything? New medications or supplements? Lifestyle changes such as exercise? Diet changes? Since the gabapentin causes side effects at higher doses, you might want to try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose, so your 900 mg gabapentin would be 150 mg of pregabalin.

[Butterflysun1 in reply to SueJohnson]

I think there is an awful awful lot about RLS and it’s treatment that is still not understood & information evolves over time.There may be different mechanisms but similar effects felt.

I agree that there could be other explanations, or it could just be that Gabapentin has been in use for less time than the DA’s so longer term adverse effects are not yet as well recognised.

I re read the great suggestion yesterday from someone, was it Julie, that we should report DA augmentation on the uk yellow card scheme.

I would suggest we report adverse effects or possible adverse effects of other treatments as well as it’s the most effective way of getting these problems highlighted.

The way it works, I understand, is the yellow card reports are centrally monitored. If there are enough reports to suggest the reported problems may be more than coincidence then an investigation is carried out & its results reported. The yellow card scheme is also always ‘live’ so rarer side effects which can take longer to be apparent, are not missed

It is a great scheme. Otherwise we are just left with the info from whenever a research project was carried out which could have been years before.

We should never say never as far as adverse effects are concerned.

[rlsagain in reply to Butterflysun1]

Yes indeed, I plan to report it, thanks.

[SueJohnson in reply to Butterflysun1]

Gabapentin has been around since 1993.

[Butterflysun1 in reply to SueJohnson]

Not for the treatment of RLS though. That came only relatively recently. It is never too late to report potential side effects. It doesn’t matter if it’s right or wrong. just report what you notice & the yellow card folk will investigate & send out alerts if they get enough folk saying the same. Originally it was an adjunct to pain relievers, and for nerve pain and I think maybe an antiepileptic. I remember it all evolving. The 1st treatments for RLS were the DA’s. The effect on RLS ( same for Pregabalin ) was discovered by anecdotal reports & then investigated.

[rlsagain in reply to Butterflysun1]

Yes, I only found gabapentin helped my RLS by accident. I was prescribed it for chronic back pain and suddenly my RLS diminished. Unfortunately it’s not working for either condition now…

[Butterflysun1 in reply to rlsagain]

That’s what happened to me with Pregabalin, prescribed for another condition then worked for RLS for several years. I was so amazed I contacted the pharm company to ask if they knew of this & urging them to look into it. They said they had had other anecdotes about this & so we’re going to run some trials. I also discovered the renal physicians had recognised this effect for their renal failure patients, in much lower doses of course. It came along later than Gabapentin of course but like Gabapentin not for RLS at first. It was a wonder drug for me …,. and then it wasn’t ……. I feel very strongly that it will be those of us with experience who can help to move these stories and facts along & then hopefully at some point we’ll all get some peace

[Butterflysun1 in reply to SueJohnson]

And sometimes longterm adverse effects take years to be realised. The DA’s were thought to be wonder drugs for RLS for quite a while.

[Joolsg in reply to Butterflysun1]

Yes I always report adverse effects via the Yellow Card Scheme. The hundreds of thousands now experiencing augmentation in the UK will not report it, nor will their doctors so we have a medical catastrophe of suffering and GPs are still unaware of it and still prescribing dopamine agonists as soon as someone visits them with RLS symptoms.Until every person experiencing increased, severe RLS on Ropinirole and Pramipexole, the UK doctors will keep prescribing them & increasing the dose when they become ineffective.

Tragic.

[Butterflysun1 in reply to Joolsg]

Absolutely tragic, I agree. It was a really timely reminder of yours to suggest we report all these adverse effects. It is so easy not to when it is recognised but the numbers will be gobsmacking & increase all the time. I don’t know why I didn’t think of it myself …… but am so glad you did. Also disputed side effects because some paper says it doesn’t happen are important to highlight. Thank you again

[SueJohnson]

Are you still taking tramadol?

[rlsagain in reply to SueJohnson]

Hi Sue, no, I stopped tramadol on 16th April- I was taking it to help with withdrawal from pramipexole - so have been taking just gabapentin since then.

[Joolsg]

nejm.org/doi/full/10.1056/n...

A 2014 study reported augmentation on pregabalin, a similar drug to gabapentin. A former HU member who was also a GP reported augmentation on pregabalin after several years so there do seem to be some people who experience augmentation on Alpha2Delta ligands.

However, in your case it could just be a blip triggered by stress or the weather or a change in diet.

How long have you been on gabapentin and were you taking dopamine agonists before? I only ask because gabapentin and pregabalin sometimes don't work well for people who have previously experienced augmentation on Ropinirole or Pramipexole.

[SueJohnson in reply to Joolsg]

I get a 505 - page not found when I click on it.

[Joolsg in reply to SueJohnson]

I've edited so link now works.

[SueJohnson in reply to Joolsg]

OK - thank you. However in this case it doesn't apply since they only tested 300 pregabalin which would be 1800 gabapentin and he is now only taking 900 mg. And he has reduced the dose because of side effects, so it is much more likely the symptoms just means he needs more which he can't take because of the side effects. I am confused by 2 different statements in the study which said The rate of augmentation over a period of 40 or 52 weeks with pregabalin was 2.1% and later said augmentation rates for treatment over the full 52 weeks were 1.7%. ???

[Joolsg in reply to SueJohnson]

Yes you're correct. The wording is confusing. I read the chart as showing 1.7% (3 patients) augmented at40 weeks and a further 2 had augmented at 52 weeks taking total number to 5. But the wording is contradictory & doesn't reflect the information in the chart. I suspect it's an error that wasn't picked up.

[rlsagain in reply to Joolsg]

Sorry, just seen your latest post with Sue. It’s worrying that a paper is published with such an error and makes me wonder how thoroughly checked everything else in the study was…

[rlsagain in reply to Joolsg]

Thanks, Joolsg. I see it’s a study of pregabalin, which I know is similar to gabapentin, so I’ll have a good read of it, thanks.

[rlsagain in reply to Joolsg]

I couldn’t open the link either, I’m afraid.

I was on pramipexole for a few years and I started to wean off in January, thanks to the advice on here. The withdrawal was ghastly (I took tramadol to help, but stopped that on April 16th) and eventually the gabapentin (which I’ve been taking a year for chronic back pain - I found out by accident the RLS benefit of the drug) seemed to be controlling the RLS reasonably well, with me just waking for around 15 minutes each night, although I hate the side effects of weight gain and wooziness each morning.

The past few nights I’ve woken several times with similar symptoms I had at the end of taking pramipexole and during withdrawal: crazy arms and legs, hot flushes, just not knowing what to do with myself, and feeling exhausted. That’s why I wondered if I was augmenting on gabapentin.

Apart from trying to eat less (to lose some of this wretched weight), nothing else has changed, and although we are getting some hot weather at the moment, July’s heatwave was worse and I didn’t seem to suffer like I am now.

I shall report all this in the yellow card system as I did the pramipexole as maybe gabapentin hasn’t been around as long so its long term effects aren’t yet fully known.

Thank you for your help and advice.

[Joolsg in reply to rlsagain]

The link now works.

[Joolsg in reply to rlsagain]

It may be worth considering medical cannabis for the chronic back pain and seeing your GP to discuss a low dose opioid for the RLS.It seems to be hit and miss whether gabapentin or pregabalin works for RLS after augmentation on the dopamine agonists.

Pregabalin never worked for me but it was a good sedative. I weaned off it very,very slowly over 9 months to avoid any withdrawal symptoms.

I hope you manage to find something that works.

[rlsagain in reply to Joolsg]

Thanks Joolsg. I was taking tramadol until April to help with the pramipexole withdrawal , so maybe I should try it again to see if it helps. Cannabis is also on my list of things to try for my my back (my son suggested it ages ago, but I’ve resisted until now).

I have an appointment at the GP surgery at last - in mid September!!! - so will go armed with all the info I’ve gathered recently. Thanks again for your advice.

[Joolsg in reply to rlsagain]

One thing to be aware of is that tramadol is the only opioid that causes augmentation, especially if you were on Dopamine Agonists like Ropinirole or Pramipexole.Cannabis is only available privately in the UK so your GP cannot prescribe it. How dreadful that you can't see a GP until September. I know the NHS is falling apart with government cuts and Covid illness causing absences but that is worrying.

I use cannabis for MS pain and it is brilliant. So does my sister and I know many people with fibromyalgia who are using it with incredible results. It's anti inflammatory as well as pain relieving and the formulas are targeted so you don't experience any 'high'. I take it in the form of oil drops at night and I'm asleep before any 'high' happens.

It's also available as flower which you grind with a grinder and use in a vaping pen or cooling tower.

The Medical Cannabis Clinic is a good option, they have initial consultations at £49 & try to keep costs down.

[SueJohnson in reply to rlsagain]

As I mentioned to Butterflysun1 it has been around since 1993.