Lyrica dosage

[mantel]

Hi there, I had been on Ropineron 1/2 mg for 15 years for my RLS and it worked fine but 6 months ago I noticed it was not working as well any more and now things are worse than they were before I started taking it. I am guessing I have Augmentation so have come off of it and my GP has prescribed Lyrica . To be honest he didn't know much about it as a treatment for RLS . He gave it to me as I mentioned a lot of people seen to take it for this condition. My question is what dose do most people take and do they take this dose spaced out through the day or just in the evening? Hoping some of you can help. Many thanks

[Hidden]

Mantel, your doctor should have told you what dosage to take. But its usual to start any med at the lowest dose first. Most meds for RLS are taking at night, as thats when the RLS is active to keep you awake. Also people find that Lyrica is better taken with another med for RLS rather than by its self. Its not a med i have taken, so hopefully someone who does take it can give their experience of it.

[mantel in reply to Hidden]

Thank you Elisse, he did give me 150 mg a day taken in 3 doses of 50mg and said I could increase to 300mg a day if needed . As he did not know of its use in RLS the 3 times a day is what is recommended for its other uses . I guess as it is not currently licensed for RLS there are no guidelines for dosing for it. I am being referred to a neurologist so hopefully they will advise me more accurately. Just out of interest what kind of meds is it normally taken with.? I don't want to go back on any in the same group as Ropinerol . Once again thank you for taking the time to answer . It is very much appreciated.

[Pippins2]

I take 150 mg at night. Doesn't do a thing for my RLS, I take it for pain but I have known people get amazing results on as low as 50 mg so well worth a go. Good luck

Pippins2 x

[mantel in reply to Pippins2]

Thank you . Will try just at night and cross my fingers

[Pippins2]

Mantel just rereading yourpost. You say you are coming off Ropinerole and normally it is recommended to wean off very slowly not just stop altogether especially after all those years on it. The other thing is a strong painkiller from the opiate family eg Tramadol is generally needed to help with the withdrawals and Pregablin may not "cut it "

Pippins2 x

[mantel]

Thank you , I do have some Tramadol . I only take 1/2 mg of Ropinerol would you cut it down to 1/4 or take 1/2 every other day to start? I was told the lowest tab was 1mg and I have to bite it in half which can be difficult . It is a tiny pill anyway so I think 1/4 would be the smallest I could get it.

[Hidden in reply to mantel]

I would try to cut in to a 1/4 and take a tramadol, try that for a few days, then see if you can stop the 1/4 and take a tramadol. As you are taking a very small dose of the Ropinerole hopefully it shouldnt be too bad to get off it. You will probably have some rough nights at first, til you are right off it. Have you a pill cutter.? I take Pramipexole a small dose, and have to use a pill cutter to half it and sometimes 1/4 it. its not easy as that is a tiny pill too.

[Pippins2 in reply to mantel]

You can get .25 size do quarter of a pill.Glad you have Tramadol to help x

[LoisTonya in reply to mantel]

I have .25 mg tablets so you cnget. Quarter.

[involuntarydancer]

Luckily you are on a fairly low dose of ropinerole and hopefully it won't be quite so awful coming off it. As a mono-treatment for rls, only a minority seem to find Lyrica particularly effective and virtually nobody finds it effective for the early days of coming off a dopamine agonist when augmented. Usually you need opiates for that or just suffer through the horrendous 14 days or so.

I took Lyrica for a while and was prescribed it up to a max of 150mg per day but I think I could probably have taken twice that and it would not have helped hugely. I didn't like the side effects either. I was advised by my consultant (a supposed expert in rls) to take it all in the evening BUT I was also advised to build up slowly to 150 mg increasing it every 3 or 4 days in 25mg increments and I think this is fairly usual advise. Good luck with it and with coming off the ropinerole. Definitely come off that stuff slowly.

[mantel]

Many thanks everyone for your advice will cut down slowly as advised. What meds are you taking now involuntarydancer ?

[involuntarydancer]

Less than a year ago, I was almost exactly where you are now. My drug regime since then has been varied and a process of discovery. I was totally ignorant at the outset and educated myself using this and other boards, the text books by Early, Buchfuhrer etc, the patient's page of Dr. Buchfuhrer and other websites. I will set out my journey in case it is of assistance to you. It is long-winded but believe it or not this is a truncated version. I don't know if it is worth ploughing through but maybe it might help ...

For about 10 years I was on mirapexin which is a dopamine agonist like ropinerole. I was very augmented by the end. As I have said elsewhere, my consultant prescribed Lyrica to take while I was coming off mirapexin but it was completely ineffective and withdrawing from mirapexin (I was taking over 1.5mg per day which is much too much) was pure torture. I stopped taking Lyrica after about 6 weeks.

After 3 months of misery when I was more or less completely unmedicated, with severe all over symptoms and very little sleep, my GP agreed to prescribe Oxycontin (an opiate - I think it is more potent than tramadol). I found I needed 30mg to quiet my rls. It was fantastic finally to find something that afforded some relief but I found it very difficult to sleep on Oxycontin as it has an alerting effect. I was also very anxious about being on a high dose of a powerful opiate. I started taking Lyrica to help me to sleep and also started a 2mg neupro patch (another dopamine agonist - I was very anxious about going back on the d/a) to allow me to reduce the amount of Oxycontin.

All the time I was taking oral iron and as my serum ferritin levels increased I found I needed lower doses. I cut down to 1mg neupro, 5 or 10mg Oxycontin and 75mg Lyrica. Then I discovered Kratom which is not a prescription drug and is not legal in some countries. It has enabled me to cut out neupro altogether (I really want to save up the dopamine agonists in case I am ever in a situation where I am bed-bound and really need the instantaneous relief they afford me). I am down to 25mg Lyrica and plan to eliminate it in the next week or two and then I plan to eliminate the last 5mg of OxyContin (cutting out the last oxycontin has been very tough previously, inducing awful restlessness and general withdrawal turmoil but apparently it is easier with kratom - I hope so!).

I still have problems with being very alert in bed at night which I think are caused by rls but the kratom is quite effective at managing the more typical crawley sensation and urge-to-move problems. I wish I had access to cannabis for the alertness - it is very effective in combating it but it is illegal where I live.

I have also been using a Relaxis pad in the last two weeks - I'm not quite sure how effective I'm finding it.

It is very much a journey for me. I continue to take oral iron - my serum ferritin is still below 100 and starts to drop very quickly if I don't take iron. Re-reading the post, I feel I should point out that I had never taken opiates before this year, I am (sadly) middle aged and not a recreational drug user. I really want to find the regime that works as effectively as possible (I try not to aim for complete elimination of symptoms as that seems to lead to dependency) with the minimum possible medication (including non-prescription medication). I have also tried all the usual suspects - magnesium, vit D, vit B, diet changes, exercise, stretching etc etc. and some have been helpful but unfortunately at present it seems that I require something a bit more.

[mantel in reply to involuntarydancer]

Thank you so much for taking the trouble to write all that down. Tramadol also makes you alert at night. I fall asleep and then about 2 hours later wide awake and unable to get back to sleep again. This is better though than being wide awake with twitching legs. I agree with you regarding cannabis , it is illegal in the UK too . I will see if I can get Kratom here. Have ordered an iron supplement that was recommended by a few people on this site. Many Thanks

[involuntarydancer]

I absolutely agree - it is almost pleasurable lying awake, slightly mellow from the Opiate and, crucially, not twitching (jerking violently). If only one didn't have to get up in the morning.

Sadly, I believe kratom has been recently made illegal in UK. If you are prepared to, it can be ordered from Holland by post in non-descript packets, which I find it difficult to imagine would attract the attention of customs.

[mantel]

Think I am going to order some online . Would get my son to get me some dope if I was a smoker. Even though it is illegal here it is very easy to get hold of and the Police turn a blind eye . I was at Notting Hill Carnival last year and people were walking around with clear bags full of little wraps of cannabis and the police took no more notice of them than if the bags were full of sweets/candy

[involuntarydancer]

The iron supplement (ferrous bisglycinate) has some very passionate advocates with one poster saying that taking a tablet at the onset of symptoms stops them in their tracks. I have not found that it works for me in that way - ie it doesn't stop the symptoms then and there - if only - but I am pretty sure that raising my iron levels generally has caused a substantial improvement in my symptoms.

If you are using dope it may be more useful to eat it than smoke it. It takes longer to take effect - maybe about 30 minutes - but the effect then lasts considerably longer. The one and only time I got some, I used a recipe from another rls site mixing a cup of peanut butter, a cup of brown sugar and an egg and forming into cookie shapes. Add about half a tsp of cannabis to each and cook for 10 mins in 190/gas mark 5. There is a lot of intense information on the internet about decarboxilation and making cannabutter and all sorts but I tried doing all that with half of mine and it didn't seem to make much of an improvement on the really simple cookie recipe. I wish I could find a source for myself as it was so effective in inducing a really good sleep.

For Kratom I use dekratomshop.nl and found them reasonably priced, efficient and the product is very effective so I suppose it is good quality though I'm no expert - have never bought it anywhere else. Red vein borneo is recommended for rls. It is very unpleasant to take - most people recommend dissolving it in grapefruit juice, starting with about 3 grams and working up til you find what works for you. I find 3 grams works for fairly mild symptoms but would need 4 for more severe symptoms. The last two nights I have experimented with taking 6 grams because I read that at that dose it really helps with sleep. I have slept better with 6 grams and also find I don't need to take a second dose in the middle of the night but it does cause some nausea in the first half hour or so. Another long post ... apologies!

[mantel]

Many thanks I will try the RVB too. ropinerol used to make me nauseous in the 1st half an hour but i got used to it eventually and the feelig stopped . maybe that will happen with RVB? I tried the Iron Bisglycinate with OJ last night with no noticible effects but will continue to take it. I am going to try to get some dope at the weekend and will try your recipe. At the moment Tramadol is working the best for me.