My consultant put me on Pregabalin for RLS few weeks ago. He put me on 50mg for a week then on to 100mg from second week. As soon as I moved up to 100mg, I have experienced extreme drowsiness to the extent it has affected my work and made my jet lag worse. I have been on 100mg for nearly 3 weeks and no improvement in drowsiness so I have halved the dose on the odd days to help. I can not change the dosage to 75mg as the capsules are in 50mg.
Have you experienced this and if so, is there anything I can do to help the drowsiness? Also the final dosage I need to get up to is 150mg.
Thanks in advance
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Hitsy
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Pregabalin comes in 25mg pills in the UK. So ask for your prescription to be in 25mg pills until the daytime drowsiness settles.Or you can cut the capsule, pour the powder onto a piece of card and split the 50mg dose into 2 x 25mg.
Are you taking the pregabalin around 2 hour's before bed? For RLS, there's no need to take it during the day.
Did your GP take full panel, fasting, morning blood tests to ensure your serum ferritin is above 100, preferably 200? Raising brain iron through iron supplements or infusions can resolve the majority of RLS cases without the need for meds.
So try iron, and if pregabalin is still making you drowsy, you could try swapping to gabapentin, which is an epilepsy drug similar to pregabalin, but with different side effects. Some people tolerate it better, and vice versa. You can make a straight swap. Gabapentin dose is 6 times that of pregabalin and you have to split the doses into 600mg 2 hour's apart, because gabapentin is poorly absorbed above 600mg.
If raising serum ferritin and switching to gabapentin don't help, come back here.
I presume you're not taking trigger meds that worsen RLS? Anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds?
Consultants say ferritin levels are 'fine', even when they are not. Ask for the actual numbers. If he says levels are 'normal', they will be too low for RLS. So you can start taking ferrous bisglycinate pills last thing at night. Many on here find it really helps and some find it stops all RLS without the need for meds.Also, UK consultants who trained a long time ago seem to be very anti iron infusions.
The new formulations are much safer and the risk of anaphylaxis and damage to organs is far lower.
There are some great haematologists around in pockets of the UK who are now aware of the link between RLS and low brain iron.
So, do not believe everything your consultant says, and do your own research.
As we have learned the hard way on this site, most UK doctors are very lacking in knowledge about RLS, dopamine agonists and iron infusions.
Do NOT agree to dopamine agonists ( Ropinirole, Pramipexole or Neupro patch).
And pregabalin definitely comes in 25mg pills here in the UK. I take one at night.
I have tried ferrous fumerate but it does not quite agree with my stomach. I would love to know more about ferrous bisglycinate, also what's the ideal dosage?
I have watch Dr Richard Allen's video and was keen to explore natural ways to solve this issue and not take meds. Improving brain iron levels by iron infusion was what I would have liked to explored first but was told its would cause liver damage as ferritin level were fine. If you can recommend any haematologist I would be very grateful.
Yes I agree, I have done lot of research and have read lot of posts on here including yours and Sues, many thanks to you both for your help and time.
Will ask for 25mg caps on my next prescription and increase the dosage by 25mg increments.
Professor Toby Richards at The Iron Clinic in Harley Street London is familiar with RLS.He does Injectafer 1000mg infusions for around £800.
If you live near St George's in Tooting, The Royal Cornwall in Truro, or Gwent Sleep Clinic, you can ask for a referral and get an infusion on the NHS.
Your serum ferritin is actually good BUT many with RLS do not get relief until levels are above 300.
Ferrous bisglycinate is 'gentle iron' and can be bought at Holland and Barrett, health shops or online. You take around 60mg at night, just before bed. Taking iron more than once a day is ineffective because hepcidin blocks absorption.
St George's will usually only treat patients who live within the hospital catchment area. I'm not even sure if the haematology team do private work. If you do, then see Dr Elizabeth Rhodes.I know Professor Walker at Queen Sq will also arrange private iron infusions.
Well, blow me down with a feather. Strange, as he talked about iron infusions at our AGM in October and he did mention that he had agreed to iron infusions in cases where the patient had serum ferritin above 200.It's annoying because many people need higher levels to gain relief and the Mayo guidelines and NHS/NICE guidance refer to levels below 100.
Kakally only gains relief when her levels are above 300. She has infusions at the Royal Cornwall.
Haematologists are more aware of the risks/benefits associated with iron infusions so perhaps you could talk to the Iron Clinic, Professor Toby Richards.
Ah ok. I will ask Prof. Walker again as I can not pay another £800 on top of my private medical.
For me, the initial intense drowsiness wore off after several weeks/months. Up until recently, I took 300mg pregabalin nightly and didn't feel too drowsy in the the mornings. I did feel I had to sleep the medication off however. I would take it around 7.30pm and sleep from 11.30pm/midnight until 7.30am/8am.
Jools has already given good advice re iron panel, and obtaining the 25mg capsules.
Is the current dose helping your symptoms?
The best advice I can give is to keep the dose as low as possible for as long as possible.
Current dose is not helping the symptoms yet therefore need to increase the dose to 150mg as per consultant to see if it improves. Several weeks and months is too long as it affects my daily life.
You may adapt faster than me. It was nearly 10 years ago so I can't say precisely how long it took, but I also increased the dose several times within that period.
You might want to try switching to gabapentin. Although they are basically the same drug except you 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. You can switch directly. The equivalent amount would be 400 mg. If that goes well you can increase by 100 mg every couple of days. 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 within 2 hours for the same reason.
I will see how it goes for next couple of weeks. Also coming off the pregabalin has to be done gradually so that will take further time and then try new meds, a long frustrating process.
Not if you switch to gabapentin. You make a straight, overnight swap.There are a lot of different views on this, but most hospitals are clear that a straight switch to gabapentin from pregabalin is fine and avoids breakthrough RLS.
If you switch to another class of meds, eg opioids, you start the opioid while still on pregabalin and then slowly reduce the pregabalin. There are lots of research articles on this, just search 'switching from pregabalin to gabapentin'. Each NHS authority in the UK has information on it as well and they all mention a straight switch from gabapentin to pregabalin and vice versa.
There is some discussion about dose equivalence, as set out in the article below..That's because pregabalin is more easily and quickly absorbed, Whereas gabapentin is poorly absorbed in doses above 600mg.
I as you was put onto Pragabalin the same dosage, I have recently had my dosage increased to 225 as you say they only come in 75mg I have only been on this dose for a couple of days.
It works very well for me, I sleep quite well, if I get up in the night toilet, very drowsy dizzy, in the morning I’m tired but it wears off quickly.
My concern is at 150mg my symptoms came on early hours of the morning, the increase has worked well, but I wouldn’t want to increase it any more .
Yes I take pregabalin 100mg and staggered around wiped out in the morning, coffee ,go easy and just do what I can , I teach fitness classes at 6am so it's not ideal but in comparison to other meds it's preferable.
Hi, I also found that Pregabalin made me loopy way into the daytime. I was on 300 mg. I had other uncomfortable side effects as well. I quit that and switched to Gabapentin without daytime drowsiness. Maybe you can try Gabapentin, which is similar but affects us differently. Best wishes for relief.
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