GP advised that as Pregabalin 'doesn't seem to be working' I should try and slowly come off 225mg/150mg a night

[Davidbaldbloke]

Had RL for about 5 years. I'm 59 male. I keep a sleep diary and over 365 days I average 5 hours sleep a night. Sometimes as little as 1-2 hours a night. Best ever 7 hours but all these hours are broken up into 2 or 3 small sleeps. I'm fit and sporty and eat healthily. Last few nights I've noticed my right leg gets RL from 6pm now. Worried it might be getting worse. Anyway thinking of lowering dose over the next month by 25mg every number of days until down to nil. A year or so ago I was taking 4 pregabalin tablets so 300mg but looking back over diary, it doesn't seem to have been much better than it is now. Hence GP reckons 'it's not working well for me' so try weaning off. Grateful for any comments as I know there are people here who are very very well informed. (My iron test a year or so ago was reasonably fine).

[SueJohnson]

I'm confused by what you mean by 225/150 a night?

[Davidbaldbloke in reply to SueJohnson]

Oh sorry. I try 150mg a few nights and if I have a series of really bad nights I go back up to 225mg for one or two nights. Then try and drop back to 150mg.

[SueJohnson in reply to Davidbaldbloke]

It sounds like it is actually helping if when you drop back to 150 mg for a few nights you then "have a series of really bad nights" and go back up to 225mg. You might try increasing it, as 450 mg is the maximum amount. Unless you were on a dopamine agonist for years it should work. If it doesn't, you may need a low dose opioid. You say your iron was tested and was fine. Do you know what your ferritin was? What is fine for most folks is not fine for those with RLS. It should be100 or more.

[Davidbaldbloke in reply to SueJohnson]

Thanks reply Sue. I experiment. I try slowly lower dosage but if after say 5 average or bad nights I increase for a couple of nights and then try and bring it down again. Thing is, a year or so ago I was on 300mg and I think generally my RL was better but even then it tales off so I try a lower dose to see if it gets any worse and often it's impossible to see a real pattern. EG300mg always works and less doesn't. I can have a low dose and still have a good night. There seems to be no sense or pattern. I can't locate my ferritin report now but it was a bit under 100 but 'normal' according to the GP's report. I note that you say one needs over 100 for RL sufferers. I eat a lot of spinach which I believe has a lot of iron in.

[Doversoul]

Hello I have been taking Pregabalin for 4 years and the max dose i take each night is 300mpg. In my case it has been necessary to separate the RLS and poor sleep issue.

The Pregabalin lets me live a normal life - I can sit and watch a film, travel , meet with friends and 99% of the time my symptoms are under control. For sleep I take Trazadone 50/100mg each night. I try to maintain then night dose at 50mg, and that is sufficient to get me off to a good night of sleep.

It's not always the case. If I have drunk alcohol I will get severe RLS and the Trazadone may not be effective until 1/2 am, but eventually, it gets me off to sleep.

If I were to take 100mg of Trazadone I would probably sleep but feel hung over the next morning.

I am fortunate in that my RLS is monitored by the Sleep Clinic staff at Guys Hospital London. They also monitor Iron and other blood info, via may local Doctor.

If you can get help from a sleep Clinic that has also RLS treatment knowledge that may be your best route. Keeping a diary is also a very good thing to do, as it gives you the record of the severity of your sleep deprivation. I suspect that the Trazadone along side Pregabalin will be a worth a try. It has worked for me.

[Davidbaldbloke in reply to Doversoul]

Thank you for your kind reply which I have read and noted. I guess I have to tread carefully and take each day as it comes but I think there will be no easy answers and I may well have to accept I live with this forever.

[Butterflysun1]

What you describe is very similar to what happened to me taking Pregabalin re it not seeming to work any more and your lack of sleep. The lack of sleep in me is entirely due to RLS waking me or keeping me awake till it switches off again. If it wasn’t there I’d be asleep.I have wondered if the worsening is passage of time or some effect that Pregabalin has had on receptors of some sort. Those of us who have taken pregabalin for some time are in the best position to report that.

Now, I don’t think any flaring up when you reduce indicates it is actuality working. My experience is that reducing is tricky as dose reductions cause a flare up which eventually reverts to baseline. Then you reduce a bit more & the same thing happens.

I found that you have to reduce very very slowly & be guided by your symptoms and the hardest bit is at the end with the smallest doses.

Eventually you are off it & symptoms are the same as when you were on it because it stopped working.

And then over time mine got even worse as that seems to be the natural history of the condition.

Then there are decisions to be made about what to try next.

It is a complete b…….

I sympathise so much

[Butterflysun1]

I should add that the reason I stopped it was that increasing the dose resulted in intolerable side effects. I never reached the max dose. But if you increase & it then again stops working your period of reduction will take even longer.

I do continue to wonder it my worsening was due to some sort of receptor damage or resetting but I have no way of knowing if that is correct or not - but I do think if there is a possibility that those of us who take/took it should report what happens to us so progress can eventually be made

[Davidbaldbloke in reply to Butterflysun1]

Thank you so much for your reply. It is a horrible condition. I got 4 hours sleep last night and it was about 2.30pm before I finally got to sleep. I don't think there are any easy answers. It totally sucks and there are seemingly no experts in the condition to go and ask. One can hardly even see a GP these days! Thanks again.

[Joolsg in reply to Davidbaldbloke]

DavidIf pregabalin doesn't help - definitely increase your serum ferritin. Some RLS patients need it above 300 to see any improvement.

You can take ferrous bisglycinate every other night as your blood reports were 'normal'.

Check you're not taking meds which trigger RLS like sedating anti histamines & benadryl, anti depressants, statins, beta blockers & PPI gastric meds.

Then discuss low dose opioids with your GP and if they are resistant, see a neurologist who will consider opioids.

There are quite a few and they're soing telephone appointments so you won't need to worry about travelling miles.

[Davidbaldbloke in reply to Joolsg]

Thank you. I have ordered some iron tablets to try and see if it helps me. Thanks also for the rest of the info which I have made a note of.

[Butterflysun1]

It certainly does suck! I am usually up over and over & often sleep in the morning ( retired and 71 ) to allow me some sleep.I think there are a few experts out there but many folk who masquerade as experts & talk nonsense or give unwise info.

Dr Buchfuhrer in California is absolutely superb at replying to personal emails from anywhere in the world.

The problem is that their options are limited & the long term effects of what we take are just slowly emerging. I thought I’d found a wonder drug in Pregabalin & it was for a while & it makes me so wary as trying to live with even worse than my current would be beyond hell.

In my last communication with Dr Buchfuhrer he said, as kindly as possible but with honesty, that my current choice was ‘take Buprenorphine ( if I can find someone to prescribe it ) or suffer.

Just now I have opted for the suffer but it is hell indeed.

And because we sufferers are ahead of the game as the experts have to do research we sometimes know things from experience that they discover later.

I feel strongly that eg this forum is a good place to report our experiences.

A few folk seem to be benefitting from dipyridamole. Sadly I didn’t

If you would like his email let me know.

[Davidbaldbloke in reply to Butterflysun1]

Thank you for your kind reply. All duly noted! Yes, I would very much like his email, thank you.

[Munroist]

Can I offer a few suggestions? Firstly on iron. The blood test for ferritin lists normal as being from about 15 to 250 (µg/L) which is a very wide range. From what I've read here over the last couple of years many people with RLS are somewhere between 15 and 90, i.e. the lower end of the range and are almost always told by the GP that it's normal which I'm sure is true for people without RLS. However for RLS the general advice seems to be the higher the better, aim for over 100 and if you have infusions then it can easily get to the top end of the range e.g. 250 - 300. I raised mine from 70 to 140 and I think it improved the RLS by making the twitching less intense although I still wake up up in a very similar way to you. I used iron supplements to raise the iron, namely iron bisglycinate (Holland and Barrett Gentle Iron 60mg), taken every other day to increase uptake (allegedly) with some vitamin C. However you are limited in how much your body will absorb through the gut by a hormone called hepcidin so achieving higher levels often requires infusions which are very hard to get for RLS in this country - I know, I'm trying. Spinach by the way is not especially rich in iron, it's a long standing nutritional mistake as far as I'm aware.

Some people find taking iron gives almost instant relief in which case take it daily but a lot (including me) do not.

Second, sport, including strenuous exercise (e.g. hard cycling, running or mountaineering) is often associated with worse symptoms although they settle once you ease off. I have found that I need to pace myself better and avoid pushing to the limit, spin on the bike more and walk uphill a bit more slowly. The best nights are when I do a hour or so of moderate walking with a little up and down, but that's not enough for me so I train harder and live with the consequences.

Thirdly, coming off pregabalin can have benefits in mental sharpness but if it's helping your RLS which is not clear from above then it might not be a good idea. If 300mg a day is controlling your symptoms and you are comfortable with any side effects then that's not an excessive amount. If you do want to come off it (I did) then I advise to reduce in small steps with at least a week in between so you can get used to the effect of the reduction on both RLS and other things like anxiety. Much better to go slowly and come off it without any issues or U-turns. It took me 3 months as I decided to stop at 150mg a day while I was doing a lot of travelling and activity. All the best

[SueJohnson]

My comment about augmenting was not meant for you as you can't augment on pregabalin.

[Davidbaldbloke]

Thank you for all the info you have written. I have ordered the iron tablets and will see if this helps in any way. Really appreciate your time on this.