Hi I’ve just been reading some of the recent posts about medication for RLS. I can honestly say the only thing that worked for myself was co codomol a 60 mg dose before bed time. I have bowel complications ( high risk of blockage ) And found that this was making me too constipated so had to stop . I also had my letrozole changed to exemestane as this was causing me so many problems . At the same time I was prescribed Lyrica - the low dose of 25 mg . This was around 6 weeks ago . I was going through terrible RLS and was really worried about going away to Devon in a confined space in a static home . There’s not a lot of space in the bedrooms and my daughter and her husband and my grandson We’re sleeping in the lounge . Well - miraculously u had a little RLS on the first night but slept for the next 4 like a baby . I just couldn’t believe it . On returning home my RLS returned a couple of nights later .
It is very hard to get an appointment with my own gp at the moment especially more so now as we are in a local lockdown in our area as it is high risk Covid. I order my Lyrica prescription online too . They send me 28 x 25mg each time . I have requested a higher dose but they haven’t responded .
A couple of times I have had to take another tablet about 3 hours after my first one because the RLS is awful . Last night and the night before was unbearable. I am dreading going to bed tonight . It really scares me . I know the Lyrica dose is really low even when taking two tablets .
My question is - the highest dose for Lyrica is 300 mg - 450 mg ???? Can I ask is this over a period of hours or do you take the dose in one go ? I sleep from about 4 am onwards most nights but when I woke this morning I felt quite sick and I could not keep my eyes open . I was holding my phone and fell asleep with it in my hand . I have also done this with a cup of tea when I’d woke after taking cocodomol. I really felt awful and just couldn’t imagine how I would be feeling on a much higher dose 😞. Can I also ask why GP s just don’t prescribe sleeping tablets for sufferers ? I’m probably being a bit naive as I can imagine people becoming very dependent on them .
I just wish something could be done for us all . I’m so fed up of not having sleep when I feel so terribly tired . I have had to retire early because of ill health and am awaiting huge surgery up in Manchester to mend my bowel . I try not to feel sorry for myself - I wear 3 colostomy bags on my tummy at present and am recovery from breast cancer aswell as the complications from bowel cancer 20 years ago . I’m 53 . I can and have coped with all this in my life and have a very supportive husband and family - I’m very lucky . But I can’t cope with this RLS .
I get very confused with what ‘augmentation’ is . I know I get so bad it’s all over my body . I have no choice but to take the cancer hormone drugs and have to for the next 7 years - my RLS got worse 3 years ago after starting these . It’s just so so hard isn’t it ? I woul really appreciate some advice . Xx
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Esme2007
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You certainly have a lot to put up with. It may help to know I’ve been on pregabalin (Lyrica) for nearly 3 years. I titrated up from 50mg to 150mg over the space of around 10 days. I take it all in one dose at around 8pm. Initially I experienced a few balance issues, particularly if I got up at night to go to the loo, but these settled after a few weeks. And it can cause a bit of day time sleepiness but I’m recently retired so don’t have to worry too much about that. I find it gives me about 80% coverage and I’ll settle for that! You are on an incredibly low dose. I’m not surprised it doesn’t help.
With regard to your cancer treatment you have my sympathies. I too am suffering from breast cancer and my RLS went through the roof during my chemo, not what you need when you are feeling at your lowest ebb. I’m now just on Letrozole and bisphosphonates and find neither of these have any effect on my legs so I’m not sure how I can help there except to say I’m with you.
I think you need to have another conversation with your GP and ask him to increase the dose to 150mg (build up to it gradually) and take this in one dose a couple of hours before bed. (You can increase it further if you need to. I’ve managed to hold mine at 150 but it’s nice to know I can increase further if I need to.) It can take a few days to build up in your system. As with any tablet you need to put up with any side effects (if you can) as they do tend to ease as your body gets used to it. And unfortunately all medications have side effects as you know from your cancer drugs.
Let me know how you get on. Incidentally were you on any treatment for your RLS prior to being prescribed Lyrica?
Hi Pam thank you so much for replying to me . I’m so sorry that are going through breast cancer too . I was on letrozole for 3 years but the hot sweats got so intense . My nurse classed them as severe - so tried me with exemestane . Initially they were so much better but are coming back again but not as bad .
I’ve never tried medication in fact I’ve never been offered it - I’ve had RLS many years but as you have said mine got so much worse whilst I had my breast cancer treatment three years ago . I know I need to increase the Lyrica dose - it’s not doing much at all . I will try ringing my GP again on Monday.
I wish you well with your treatment . Not a nice thing to have to go through I know . Sending you a big hug and thank you so very much xx
Thanks Esme and yes, I’ve quite a journey ahead of me. Only just started but one day at a time.....
If you’ve not tried medication at all then I suggest you listen to Manerva - he gives excellent advice. All I can add is please don’t be tempted with a dopamine drug should your GP try to offer it - Ropinirole, pramipexole or Neupro. Read up all you can on here and educate yourself. Hopefully with the correct dose Lyrica will help. If not, there are other things you can try so please don’t despair.
Pamx
Hi Esme
Sorry to hear about all your issues, to have RLS and insomnia as well is awful.
Just a couple of things you may find helpful.
The UK recommended maximum dose for pregabalin is 300mg.
25mg is possibly a good starting dose for you, but it can be increased in steps of 25 - 50mg. When you find a dose that works, don't increase it any further.
You should. be able to get a telephone appointment with your GP.
I'm afraid dose and timing of the dose is a bit trial and error.
It's usually only taken once a day at night. It can make a difference when. It reaches full effect 2 - 3 hours after taking it. If you take it too late, you may have problems getting to sleep and may feel drowsy and nauseous next morning. If you take it too early, you may wake up too early.
Some people do get symptoms during the day. This only indicates augmentation if you're taking a dopamine agonist for your RLS. If you're not then you won't have augmentation.
You could split the dose of pregabalin i.e. twice a day, but this might not help. If you split the dose, it won't be as effective because you will be halving it.
Additionally, if it makes you sleepy, you will be sleepy during the day.
GPs don't like prescribing sleeping tablets long term for RLS. This is partly because they're quite addictive. In addition if insomnia is due to RLS, a sleeping tablet isn't very effective.
Hopefully you are being carefully monitored for any signs of iron deficiency. because of your bowel problems. This includes tests for haemoglobin, serum iron, transferrin and ferritin.
If your haemoglobin is low and/or your ferritin is below 75ug/L your RLS may be improved by iron therapy. In your case oral iron may not be of much help, you would probably need iron by injection, preferrably IV.
I'm glad to hear you slept in Devon, I recall you were worried about it.
I'm so sorry to hear that you are having such a hard time. With RLS on top, that's too much.
Great advice already. Just to add that when I was increasing my dose of Lyrica I had terrible nausea too, but it did go after a few days of being on each dose. I also usually took 150mg, once, about 30 minutes before bedtime.
Can you get a phone appointment with your GP? I do all mine on the phone. And if they say 'is it urgent?' say yes! Because it is.
I have been prescribed 2 x 150 mg pregabaline because the rls/plmd starts already during the day. I take the second 150 mg pregabaline about 1 hour before going to sleep. The pregabaline really works for me. I advise hou to make an appointment with your gp and ask him/her to get a much higher dose.
I have noticed an increase in appetite and some weight gain. Since I have an eating disorder (compulsive eater), I did not initially ascribe it to the Lyrica. Been able to understand and manage the eating and increased appetite better since I became aware of this as an issue.
My experience with Lyrica: I did have side effects every time I increased the dose. Lyrica does also act as a sleeping aid; it deepens sleep (although often accompanied with daytime sedation). I was told by Dr. B that the maximum dose is 600 mg if you are taking it for daytime coverage (this is in the US) so that would be split 300/300, and he will go up to 450 mg. at night if necessary. I increased every 5 days or so. I read it works very quickly, that it is effective after an hour (this is my experience too). Definitely increase slowly. No augmentation with Lyrica, but you can't stop cold turkey.
The one thing that struck me about your lengthy post was that the only thing which helped you was co-codamol, but that it makes you constipated.
I am on Prolonged Release 0.26 mg of Mirapexin (yes I am back on a DA, as Gabapentin did not work) which I take every night precisely at 8 pm.
But at 10 pm I take 2 co-dydramole (10mg/500mg) which is similar to co-codamol. Now to prevent the constipation I take 1 Senokot (max. Strength Senna fruit) which is a laxative, plus in the morning I eat 6 prunes with my cereal. At bedtime I also take 0.5 mg of Clonazepam.
Oh thank you so much for replying and giving me advise . Unfortunately I am unable to take anything like laxatives or foods to prevent constipation. I had surgery 4 years ago which damaged my bowel so I have a tear in it which releases my small bowel contents through two fistulas and I also have a colostomy . I therefore have a very strict diet and anything of high fibre can cause me to be very sick but I really appreciate your advise thank you xx
Hi Esme. I have had horrendous RLS for 40 years and have tried everything with no success. UNTIL once on holiday with friends, I had a bad attack in the evening. Next day she gave me 2 canabis joints. A miracle. I believe medicinal canabis is soon to be available, if so I suggest you google this, might be imminent. Would be good if you could get it on prescription. I was almost suicidal . Now I grow a plant in the garage!
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