Hi I had a telephone consultation with a neurologist at Hallamshire hospital Sheffield last week and found that the lady in question was knowledgeable regarding rls and augmentation which I found refreshing. I explained my complex history regarding the disease and the outcome was that I would be put on Pregabalin 50mg capsules to be taken at bedtime and also Codeine 30mg tablets to be taken at night as required. Given the fact that my rls as got a lot worse recently coupled with insomnia I am hoping for some relief but not getting my hopes built up I've had to many false dawns but what with the current situation and very little sleep like many others feeling quite depressed.
As anyone got any advice on the drugs that I am about to take good and bad points
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Hoochybaby
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I’ve been on pregabalin for 18 mths and it’s been very good for me (also recommended by a neurologist at the Hallamshire!)
I assume she has told you to titrate up? I was told to up it every 3-4 days until I found a dose that suited me. I don’t think 50mg will be enough. I take 150 mg and have been steady on that for all this time. I believe you can increase to around 300 mg with doctors advice obviously.
I had a few side effects initially- balance issues, dry eyes and a small weight gain. All tablets have side effects, most wear off after a few days so don’t be too quick to pack them in. The balance issues I coped with as I took them at night, (8pm), I have eye drops for my eyes, and my weight gain stabilised after a few months. Also as I was sleeping so much better I felt more like exercising and was less likely to binge eat.
So they aren’t perfect (what drug is?) but I get about 80% coverage and I have my life back. After the horrors of Ropinirole argumentation and a tolerance of Tramadol I now feel I have hope and I hope they work for you too.
Hi Pam thank you for your reply. The lady neurologist was I think dr Wong at the Hallamshire who said I could take Pregabalin as required but on the capsule box it was written not to stop without dr permission and to take Codeine at night as required. A telephone consultation is not as good as face to face but I think that was the general drift I have had very little sleep over the last week so I’m looking for some improvement
I didn’t think it was a drug you could dip in and out of. Stopping suddenly can cause problems and your doctor would want you to reduce your dose gradually if you need to stop. My RLS was every night without fail. I needed something I could take regularly and rely on. I didn’t see Dr Wong. I’m not sure how great her knowledge of RLS is!
Codeine was never mentioned either. I’d be inclined to try and call her back. 50mg will not be sufficient I feel sure but it would be foolish to increase it without discussing this with your doctor.
Hi hoochy and Pam, indeed, 50mg is a low dose as the few studies on pregabalin used mainly 300mg. But, a dose-range study (Allen et al 2010) showed that 50mg was only slightly less effective than the higher doses. It also showed what is often said here on tue forum, that it may take 2-3 weeks to become effective. Anyway, 50mg is not at all a bad starting point. And I wouldn't increase too quickly, not until after 1-2 weeks. At higher dises chances of side-effects are also higher. Thus finding your personal minimum effective dose is always wise, for every medicine you need to take.
Hi again, both pregabalin and codeine, an opiate can be of some help. As Pam says, 50mg is a little on the low side, but you have to start low and titrate up.
Codeine is not the best opiate for RLS, simply because it's not particularly potent. This means the amount you have to take to take to get a good effect can lead to significant side effects. The major one with codeine being constipation. However, it may be that the doctor is less confident about prescribing something more potent, e.g. targinact, (which is licensed for RLS) or buprenorphine.
Hopefully you have no respiratory problems because codeine can cause some respiratory depression and pregabalin can add to it. Safe enough if you've no pre-existing respiratory depression.
Heaven forbid, if you get covid 19, you'd best be stopping these!
The pregabalin may take a few weeks to work and an effective dose may be more like 150mg at least.
See how you go on, give it a few weeks and I hope you get a good result.
Thank you Manerva I have just been given 14 days supply of pregabalin at the moment so I will have to stick to the 50mg dosage until I can get some contact with my gp not an easy thing to do at the moment but I’m hoping for some benefit if it’s with my sleep issue
Madlegs, where did you get the info about mg affecting med uptake? I happened to look at drug.com (I think) the other day to look for support for that claim (for oxy and preg, my current meds), and it said specifically that mg did NOT interfere. I know, they will probably only write it when it has been proven in a scientifically sound study, so it may simply be lack of (scientific) evidence and then the null-hypothesis of no interaction prevails. But if you have a source, I'd like to know about it.
I started taking 2 x 50 mg of Pregabalin in February, after an 8 month break from meds during which time my RLS symptoms had gone through the roof and insomnia had kicked in. So, I gave in, went to see my GP and was prescribed Pregabalin.
I was lucky in that the Pregabalin had an immediate effect on both the RLS and the insomnia. Initial side-effect was tiredness but that’s worn off. It’s definitely the minimum dose for me, as RLS often still kicks in about 2.00am when I tend to wake up for the loo, but not every night and I do manage to go back to sleep.
Interesting that you should write about Pregabelin and codeine. Because of my neuropathy coupled with RLS I take Pregabelin and Tramulief and use a Neupro patch. I am wondering about taking a Zapain tablet due to continuing pain at night. Zapain is a 30/500 codeine to paracetamol mix. I am hoping to speak to a neurologist next month and so I will leave decisions until then
My suggestion would be get off the Neupro patch........it is a dopamine and can cause extreme augmentation. It did in me and I had to get off immediately.
Hi i use both although i take a much higher dose of pregabalin 300mg twice a day i do think it helps however i have had a lot of stomach upset i would suggest that you ask your GP i have to take laxatives regularly .
I am on a similar combination and it has help me tremendously. I’m taking Gabapentin and hydrocodone and weaning off or requip. I’m down from 5 pills to 1 and about to drop it. I went from sleeping in the bathtub at night to sleeping in my bed. I was having RLS all day from the augmentation, but that’s is not happing now. I can actually function! I hope that works for you!!! 😊
Your doctor made a big mistake. You should use the liquid form instead of the 30 mg pill. By using liquid you can easily change the dose. Probably 16 mg would be effective for the first month or two. Then you can slowly increase the dose to maintain efficacy. I have been using codeine for 2-3 years. When I get to 24 mg and that starts to not be effective, then I go off the drug for 14 days, which is very painful. After that the efficacy returns. The other key point is that the first day I use it, the efficacy is very poor. There seems to be some cumulative benefit, so do not be discouraged if the results are poor the first day. Also, never take it more than once per day since that will accelerate the time it takes for efficacy to decline.
I did this for long long time. When i stopped taking it becuz it stopped working, and it will, i got deathly ipp for 2 weeks. I had to start taking again to be able to even hold my head up and go to batbroom without someone carrying me. I thought i was about to die. Took 1 dose and all symptoms went away. Had to wean off for a YEAR. Worst thing ever been through. These docs giving gabapentin and pregablin need to go get more education. Very addicting. Don't even start it. You will regret it.
My Neurologist said i could take Pregabelin 75mg occasional when i absolutely need something extra. I am already on Clonazepam. I started off taking 50mg of Pregabelin every few nights and found they work well. I won't take the 75mg while 50mg works ok for me.
Thank you for your reply I have only just started taking pregabalin and so far the results seem good early days but last night I had some good sleep I’ve stopped the zopiclone after I read bad posts on this drug keeping my fingers crossed
I have taken Codeine for over 10 years and found that 30mg was all I needed at night. However last year I started having migraines, which I had only had occasionally before, much more frequently. Apparently Codeine can do this. I have now reduced to just 15mg. This still works quite well, but do get some breakthrough sometimes. But migraines have almost stopped.
I think I am lucky that such a low dose works as without it as I am awake most of the night every night.
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