Hi, I restarted Pregabalin in Feb. this year partly I have to say out of desperation, there being nothing else prescribeable available to me, GP had allowed me to trial Codeine but it took 90mg to suppress symptoms and there was no way that was going to be viable long term, more potent Opioids were ruled out. My quandary is this, when I gradually built up to 175mg back in Feb/Mar it brought almost total relief, however after a Month or so I needed to increase the dose, I`m now on 225mg taken at 10pm, sleep at 11 awake at Midnight with ants crawling about in both knees, I then spend 30/45mins walking about stretching massaging trying to resist the temptation, most nights unsuccessfully to take a supplement, I have access to Kratom and having reconnected with TMCC recently Med/Cannabis [ Noidecs 25mg/ml. THC] the Kratom [Red Borneo or Red Thai in capsule form] will suppress symptoms but keep me awake, and the Med/can does`nt do much for Rls but does help with sleep. This pattern of having to increase the dose is very reminiscent of the Ropinirole situation of a few years ago which is what is worrying me, Thanks for reading, any thoughts or input would be welcome.
Pregabalin, Dosage thoughts? - Restless Legs Syn...
Pregabalin, Dosage thoughts?
You might want to try switching to gabapentin. Although they are basically the same drug, 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 such as the feeling of ants crawling. Multiply the pregabalin amount by 6 to get the correct dose, so that would be 1300 mg or possibly 1400 mg. Take 600 mg 1-2 hours before bedtime. Since you need more than 600 mg, take 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. Since you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Have you had your ferritin tested? If so what was it? If you take any other medicines or over the counter supplements, if you list them here I can tell you if any of them are likely to exacerbate symptoms and can perhaps give you a safe substitute.
Hi Sue, Yes I could get my GP to swop to Gabapentin for a trial but surely the creepy crawly is a symptom rather than a side effect, the only regular Med. I take is Levothyroxine. Back in Mar. my Iron status was given as follows, Serum iron level 17 umol/L Serum transferrin 2.06 g/L & Transferrin saturation index33%.
On second thought you are probably right, that it is a symptom of RLS. I would increase the pregabalin by 25 mg every couple of days until you find the amount that controls your symptoms. I see that you said earlier that pregabalin only controlled your RLS by 80% which is another reason to increase it. When I first started gabapentin, 900 mg controlled my RLS, but several months later I had to increase it to 1500 mg and I haven't had to increase it since and that was over a year ago. Also I see that you were occasionally taking ropinirole so you may be still having affects from coming off that. The levothyroxine can increase RLS symptoms, but I don't know of a safe substitute. The iron figures you gave me don't include ferritin, which is the important one for RLS. The normal blood tests for iron don't test for ferritin. I would ask for a full blood panel. Fast after midnight and have the test in the morning when the ferritin is lowest and if you take any iron, stop it 48 hours before the test. If your ferritin is below 100, improving it to 100 or more helps 60% of people with RLS.
Food for thought, I haven`t taken any Ropinirole for 7/8 Months, in terms of Iron I already take a supplement every other night with orange juice as rec. in terms of ferritin I asked in writing for that specifically and was met with blank looks when the results were given me, and the chances of getting anywhere with an infusion via my GP Practice are virtually nil.
Doctors !!! And they think they know everything. You really do need to ask for the full iron panel even if just to see where your ferritin is. There are ways to get iron infusions. If you find you need one, make a post on this forum. I have seen previous comments on ways to get them in the UK.
Ask for a serum ferritin test to include all 4 panels. It’s not rocket science.
The mean effective dose of pregabalin is around 300mg so perhaps the amount you're taking isn't sufficient for you.Is the ants crawling feeling your RLS or a new thing with pregabalin?
I usually take pregabalin at 7.30pm and sleep around 11.30pm. Perhaps you could try taking pregabalin earlier in the evening to see if that changes anything.
Hi Amrob, My concern is this, when I restarted Pregabalin back in Mar. 175mg was great for a few weeks but since then I`ve had to keep increasing to get any relief at all, and yes I accept that the Mayo Algo. suggests most will need between 150-300mg but my thoughts, perhaps wrongly was that you increased the dose til you got relief and then that should be that. The creepy crawly sensation in the knees along with the occasional 30/45 min. of leg flicks is my " normal" untreated situation.
Yours was moreorless my experience in that a certain dose would work for a while then i'd need to increase the dose to get satisfactory results. I settled on 300mg and have been there for several years (with a couple of brief exceptions when i reduced slightly to trial other meds).
Hi Bumble44, I empathise with your situation as I’m currently on 600 mg Pregabalin plus 2.5 mg MST Continium twice a day and I’m ow being referred back to sleep rehab clinic in a new part of the country. My hope now is that I can get prescribed Targanact which is an opiate/anti opiate. It’s clear to me that my symptoms are so severe as to be beyond medical or alternative interventions. These include taking a really hot shower or bath until 3 am, 30 mins stretching gives relief for about 20 minutes. But for me the only real solution is driving because it takes all your concentration. I haven’t found exercise such as swimming, walking or cycling have helped me because for me it’s become so much about sleep. It could be made worse by stress but I haven’t (yet) been able to eliminate it. I’ve never smoked and I rarely drink alcohol. Sorry I can’t be more help but even though it’s not a dopamine agonists, Pregabalin worked fine till I hit the 600 mark, and I started on 300 so a much higher dose than you. Good luck.
Gosh, I do sympathise, good luck with the Targinact quest, and yes I found driving works.
Were you ever on a dopamine agonist?
Yes, I did the rounds twice but that was pre 2016 when I had a car accident because I fell asleep at the wheel -at 11 am. That was only a year after the same kind of accident 10 mins into a 20 min drive at night.
Ouch ! I hope you weren't hurt too badly. Having been on a a dopamine agonist is probably why the 600 mg of pregabalin isn't helping you since it can damage your dopamine receptors.
Since the pregabalin isn't helping, you will probably want to come off it at some point. Be sure to withdraw it very slowly to avoid withdrawal effects. If you do it slowly enough you won't have any problems. Good luck on getting the Targinact. If the doctor doesn't believe in opioids, print out the section of the Mayo Clinic Updated Algorithm on RLS that discusses opioids to show him/her.
Thank you, that’s very helpful and explains a lot! How do I come off pregabalin slowly? Is there something to take the edge off because I get really excruciating RLS?
I would reduce by .25 mg every week. If you start having withdrawal symptoms go more slowly. The Targinact should help.
Thank you Sue, that’s a long time reducing even from 300 mg that’s 18 months!
Yep - you could try it faster but if you get withdrawal symptoms go back up a dose.
I'm sure Sue means 25mg per week, in which case complete cessation of a 300mg dose would be 3 months.
Of course, silly me, thank you.
Out of interest, why were more potent opioids ruled out? Do you have respiratory issues? Targinact is an opioid and is licensed for RLS in the UK. Pregabalin worked for you but you are now finding 225mg doesn't cover your RLS symptoms.
I agree with the others that you should first try a higher dose of pregabalin AND get serum ferritin levels checked. The NICE and NHS guidelines mention this.
If raising ferritin and the pregabalin dose don't help, then you may be someone for whom pregabalin doesn't work after augmentation on ropinirole. Dr. Buchfuhrer does mention that it happens quite often. That is when you could ask for Targinact or buprenorphine. Targinact is licensed but buprenorphine is prescribed off licence and if your GP won't prescribe it, you could see a neurologist privately.
No I`ve got no issues which would prevent an opioid being considered but by GP of 30yrs said he would`nt be comfortable prescribing same, but I will have to have another push both for the serum ferritin and more importantly Targinact or better still Buprenorphine, and I am aware of your difficult journey to eventually finding relief with Bup. In the meantime I will increase the Pregab. and see what happens, not much to lose.
Hi Bumble I am with Joolsg and others on this. 1st - I would not recommend moving from Pregabalin to Gabapentin. I am not surprised that your current dose of Pregabalin is sub therapeutic. I have taken both medications and find side effects from Gabapentin can be worse. Of course, everyone’s experience can be different.
Do not be concerned over an increase to 300mg of Pregabalin. I started at 100mg and was ordered to increase by 100mg up to 600mg/day (300mg twice daily) until I found the correct dose for me. I eventually had to increase up to 300mg at bedtime. Now I have been able to back down to 200mg/bedtime and I am hopeful to continue to lower my dose.
Remember, if you were on Requip or something like it for a long time, it could take a significant time for the receptors in your brain to calm back down. Your need for higher doses is most likely temporary. I understand your worry after going through augmentation myself. Good luck!
A consultation with an high;y qualified sleep consultant, resulted in a recommendation to go up as far as 450 mg/day split over twice a day., and then gradually reduce the dose until found to be adequate.I have used Pregabalin and it works.William Potter
Are you still on ropinirole and pramipexole?
Didn't read whole thread, but my understanding is that if you take Pregabalin on a full stomach it takes THREE hours to kick in (and magnesium should be avoided for either 3 hours before or after). I don't know if you are eating when you take it before bed or with mag or not. Good luck.
Thanks, I`m taking the 225mg several hours after eating.
It is 3 hours before. You don't want to take magnesium after.
Hi Bumble - I weaned myself off Ropinirole a couple of years ago and have been on Pregabalin since then on a gradually increasing dose where I now take 300mgs about two hours before bed (I don't go before 1.30 otherwise the night is long if you only sleep 4 hours) and wake around 5 or 6. This is about the best I can achieve. I have tried taking it up to 450mgs but there was very little difference at this dose and I dropped it down again. I also take Co-dydramol and sometimes Diazepam but these are more for general osteoarthritic pain and back pain. My ferritin level was low at 17 and I enquired about a transfuion, but GP ruled it out until I'd given oral supplements a trial and I understand this can take months to have any effect. Any mention of an opioid such as Buprenorphine or Temgesic was immediately kicked out of court! I read, on this thread I believe, that splitting the dose could be more effective so I'm going to give that a go. I hope you find a balance of medication that gives you some relief, I suspect none of us is ever going to achieve that elusive 8 hours! Best wishes and good luck!
Hi, Definitely some parallels there, it`s a wicked thing isn`t it, I`m trying to prevent it defining what years I have left, I return your good wishes.
You might want to print out the section on opioids from the Mayo Clinic Updated Algorithm on RLS and show your doctor. On the iron, which one are you taking?
Is Mayo Clinic the American version of UK NICE? I'm afraid only NHS guidelines ever get mentioned, and last Christmas I sent him a whole sheaf of information I'd printed out - but he never even mentioned it! He has prescribed ferrous sulphate, and I have gone along with it as I'm so worn down by the lack of interest or, surely, curiosity as a medic? I've heard that Gentle Iron is a better option and it's something I will be trying as the Fe Sulphate doesn't suit me that well. Thanks Sue.
The Mayo Clinic Updated Algorithm is the latest and best advice on RLS and is used by doctors in the know even in the UK. It is written by the top doctors on RLS in the US. I can't access the NICE guidelines because I don't live in the UK, but I have heard from others on this forum that they are not up to date. Rather than sending it, since you don't know if he would read it, I would take the appropriate section with you and have him read it in your presence. If he won't I would consider switching doctors. Gentle Iron is not better, it is just better if you have constipation or stomach upset on the ferrous sulfate. You could take twice the dose and every 24 hours, but no sooner, to help increase your ferritin.
I'll definitely take your advice Sue. I have a prescription for Duloxetine which I haven't started yet because one of the side effects is RLS, even though I told him I wasn't anxious or depressed! And now he wants to know why I haven't started it and why I'm still taking 300mgs Pregabalin. I'm fearful it will be a case of 'out of the frying pan ...' so I'm hanging on grimly to this dose which gives me a 'guaranteed' occasional 4 hours sleep. I'll print out the Mayo guidelines - the US appears to be fully accepting of the seriousness of RLS, unlike here in the UK where I'm made to feel like a hypochondriac! Wish me luck!
I'll definitely wish you luck.
Don't let him force you in to taking duloxetine. My RLS was under control and my doctor had me start it and 3 days later my RLS was sending me through the roof. I have been thinking on the pregabalin. Although you haven't noticed any difference between the 300 mg and the 450 mg, it may have been too soon after you stopped the DA. It obviously is working since you are getting 4 hours of sleep. I would give the 450 mg a try again and after a couple of weeks you might even try increasing it. Even though 450 mg is usually the maximum dose, the actual maximum is 600 mg. Go up in 25 mg doses every couple of days. If that doesn't work, go down very slowly to avoid withdrawal effects.
Interested to read your reaction to Duloxetine. I have to call him (which I've been putting off, like a naughty schoolgirl having to report to the head) and I suspect he won't be too pleased that I've been making my own prescribing decisions! Oh well, I'm the patient here. Trouble is, nothing seems to be consistent, depending on my activity during the day, and I've gone 72 hours with no sleep at all sometimes. I must come across as constantly changing my story, which I do. I'll ring him Monday and tell him I don't want the Duloxetine, it's too risky and I'm instinctively wary of it. Thanks Sue for your incredibly helpful input here, I simply can't take anything that could make my symptoms worse again. So grateful.
Interesting to read about the split dose. Might be worth considering before asking for Taganact. I did try that once before but may not have been according to recommended timings.
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