Day 4 on Pregabalin

[barbarylane]

I've decided to take the plunge and start on the pregabalin medication 75mg dose twice a day. I've had no restless leg since day one of taking the tablets apart from last night when I had sticky toffee pudding (a very guilty favourite of mine). I woke up a couple times with mild tingles but managed to get back to sleep quite quickly. If ever I used to have my favourite desert, it would send my legs crackers all night so I am happy with results so far.

I do wonder what the side effects are as unfortunately the same day I started the medication, I came dowm with Covid. So at first I was thinking that the side effects were horrendous but now I am leaning towards the fact that it was all due to my Covid symptoms. I've had headaches, chills, sore throat, sore eyes and the worst is the night sweats which I'm still getting. I don't know whether this is Covid related, the medication or a mixture of both? I'm just hoping it settles down soon.

Any advice would be appeciated.

[SueJohnson]

You don't need to take pregabalin other than at night because one only has RLS at night. Doctors will prescribe it that way because it used to be only prescribed for neuropathy.

All of your symptoms including the night sweats can be a symptom of covid. You need to wait until you are over covid to see what if any side effects you have. And if you do have any they may disappear after a few weeks.

[barbarylane in reply to SueJohnson]

Thanks Sue, so should I take 2 tablets at night or just the one?

[SueJohnson in reply to barbarylane]

Yes take both at night.

[Bowie4eva in reply to SueJohnson]

Sue - I get really bad RLS daytime too!! Sometimes for hours and worse than at night. Does that mean it’s something else?

[SueJohnson in reply to Bowie4eva]

If you meet the following criteria then it is RLS: All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition

Did you switch to gaviscon advance? If not, that is your problem.

Are you taking an opioid as advised to stop your daytime RLS?

Another option is to take Horizant which is basically gabapentin in a 24 hour format however it is hard to get in the UK and is expensive. Elsie77 found it at unitedpharmacies-uk.md/Regn... for £160.74. I believe she also found it at a couple other pharmacies and Dotmowatee was able to get it in Plymouth.

[Bowie4eva in reply to SueJohnson]

Thanks, Sue, all true! I have MS so ability to move is limited, which I personally think explains (partially at least) daytime RLS.

Had a chat yesterday with the Limb Movement Disorder Specialist in Oxford and begged him to give me Buprenorphine or similar. This area of England has strange rules. He was pretty good and did listen, so fingers crossed.

Meanwhile, I will ask my GP next week about switching indigestion medication. I’m also switching from Pregabalin to Gabapentin to see if it makes a difference.

Thank you x

[SueJohnson in reply to Bowie4eva]

To get the equivalent gabapentin dose multiply the pregabalin amount by 6. You can switch directly and don't need to wean off. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason.

[Bowie4eva in reply to SueJohnson]

Thanks Sue ⭐️ x

[anniekelnat in reply to SueJohnson]

Not true about RLS only at night. I get it while at the movies or sitting on an airplane. Can happen ANY time I’m just sitting still or trying to nap during the day. I’ve just started taking Horizant a few days ago. Seems to be working well.

[SueJohnson in reply to anniekelnat]

Are you off ropinirole? If so for how long?

[SueJohnson in reply to anniekelnat]

I guess I should have said generally - see the diagnosis I gave above to Bowie4eva.

[SueJohnson]

That's great that you didn't have any RLS. Covid can cause inflammation that makes RLS worse so you are lucky in that regard.

[barbarylane]

It is great that I had instant relief. I hope it stays that way too. Looking forward to getting better so I can feel the full benefit. I would love a better night sleep so fingers crossed.

[Joolsg]

Those side effects sound like Covid symptoms.RLS-UK sets out how to take pregabalin for RLS. Your GP will not have received any training about RLS so will not know it follows the dopamine cycle. Therefore it is worse in the evening and night. It's a waste of medication to take pregabalin twice daily. That's for nerve pain, not RLS.

Your GP should have started you on 75mg at night and instructed you to increase every few days by 25mg. That way, you take the minimum dose to cover symptoms.

So ask for some 25mg pills and take 75mg at night and increase up to 100mg. Monitor and only increase if you still have RLS.

[barbarylane]

Great! Thanks for the advice Jools

[SueJohnson in reply to barbarylane]

If you cut back to 75 mg now you will have withdrawal effects. I would stay on the 150 mg. Otherwise you need to reduce by 25 mg every 2 weeks to avoid withdrawal effects.

After the covid is gone if you want you can try reducing that way to get to the lowest dose that covers your symptoms.

[Joolsg]

Did you push further on iron blood tests? If your serum ferritin was 34 you could get a private iron infusion via the Iron Clinic for around £800. It might completely.resolve all your symptoms.The iron Clinic has centres in London and Manchester and a pop up Clinic in Leeds.

Raising serum ferritin above 100ųg, preferably 200ųg/L resolves the majority of RLS cases and is FIRST line treatment amongst experts. The UK is at least a decade behind in treatment and knowledge is very, very poor.

[barbarylane]

I've got the form to get my blood tests done but I'm waiting until I'm over Covid before I have the blood test, just so I get an accurate reading. I'm close to Leeds so will keep that pop up clinic in mind.

[Hidden]

Hi Barbary, my RLS disappeared when I had Covid and I believe it was due to fever. A fever evokes the release of dopamine much like a DA. I see Jools recommended you try ferrous bisglycinate at night. For many of us on here, that iron capsule provides complete, or near complete, relief in about 1.5 hours for one night. So must be repeated every night. You have to take it about two hours before bed on an empty stomach. You might not even need the Pregabalin. See below:

healthunlocked.com/rlsuk/po...

[Munroist]

It’s good news that the pregabalin is helping with the RLS and at 150mg you are a lot less than maximum dose which should mean that any side effects are reduced. I think the main thing is to give it some time because it can take a while for you to realise what’s changed if anything. I took 300mg a day for a year and generally found it ok, albeit it didn’t seem to help the RLS. I found the effects were a little like a couple of drinks slightly relaxing, bit disinhibited, and slightly foggy but not unpleasant. I think my weight went up a smalll amount but that could easily have been a more casual attitude to food. There was also a useful anti anxiety effect. It did occasionally seem to make me “catch” in the middle of speaking vociferously or emotionally but it was rare. I only had 75mg tablets and to be honest the effects of increasing or decreasing by that amount were hardly noticeable but if you do decide to change dose and you can get 25mg prescribed then it can’t hurt and will help keep the amount you take low. Good luck.

[David7]

The new Covid symptoms has excessive sweating. The sweating can last several days especially at nighttime. They will pass so don't worry.Best wishes for a speedy recovery.

David7