I have successfully come down from 150 to 120mg but I cannot seem to get any lower. I only take it at night to help me sleep and keep jumpy legs at bay.
As per recent posts, the weight gain from Pregabalin is making me miserable. I’m between two unbearable situations and the pain specialist suggested deep breathing and a you tube video so hey….
Has anyone in the community tapered down and Off Pregabalin? Can anyone suggest how I can do this safely and effectively? Is it a matter of weeks / months or years?
Hope you can help as always
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careerSquirrel
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I came off 150mg in 2020 by reducing half a 25mg pill every 2 weeks. As I neared 50mg I reduced by a quarter of a 25mg pill every 2 weeks.BUT, I was still taking 25mg Oxycontin.
You may get off pregabalin, but what will you take for your RLS? RLS doesn't suddenly disappear.
Unless caused by low brain iron and you get an iron infusion that resolves the RLS, you will need a low dose, long half opioid.
I think you should push for updated full panel iron blood tests and an iron infusion if serum ferritin is below 200ųg/L. If you can afford it, the Iron Clinic in Harley Street will do an infusion for around £800.
Has your GP discussed alternative medications? Low dose opioids or levetiracetam, another epilepsy drug, are possibilities.
I attended the Pain Clinic at Royal Derby Hospital. Dr Rebecca Bertram saw me. I suggested Levetriacetam and she said there was no evidence this worked on RLS and is rarely prescribed.
This answers Sue’s comments also; I was denied switching to gabapentin because the consultant said it was the same drug and likely to experience the same problems.
I have raised my dissatisfaction with this assessment. When I attended the sleep disorder clinic in Leicester, I was categorically denied an infusion and told to take supplements instead. My GP told me that was likely due to costs.
If I were to be allowed an opioid, which is the safest to take?
Targinact ( Oxycontin and naloxone) is licensed for RLS in the UK and works well for many. nice.org.uk/advice/esnm67/c....
However, it is supposed to last 12 hours, but it clearly does not for the majority. That's why the Sackler family in USA were in trouble. They lied about how long it lasted.So, for many people it causes mini opioid withdrawals, the main symptom of which is RLS. If you take it, try 5mg every 6 hours, rather than 10mg every 12 hours. Average effective dose is 30mg.
Alternatively, the long half life opioids, methadone and Buprenorphine work extremely well for RLS but UK doctors are unaware of their effectiveness and are afraid to prescribe them, despite the Massachussetts Opioid Register showing they are highly effective and do not cause addiction or tolerance.
Your doctor is right about gabapentin. It can also cause weight gain. But pregabalin and gabapentin are issued 'off licence' so she could at least offer a one month trial of levetiracetam!
It is almost impossible to get an iron infusion on the NHS, that's why I mentioned the Iron Clinic in Harley Street. Many people find their RLS symptoms improve dramatically after an infusion.
So, if you can afford it, arrange a private iron infusion. You send your full panel iron results to the Clinic and they arrange everything.
In the meantime, ask your consultant for a replacement medication. They can't leave you 'untreated'. NICE guidance does mention opioids and targinact is licensed, so your GP can prescribe it.
Buprenorphine may be red listed in your area, so ask your GP. If red listed, only the pain clinic or a neurologist can prescribe.
My GP prescribed Buprenorphine on a 3 week trial. It stopped ALL my RLS symptoms. As it's not red listed in South London, I can get repeat prescriptions from my GP.
But it is a postcode lottery here in the UK.
Hopefully Dr Rebecca Bertram will read the Mayo Algorithm and the Opioid register at Massachussetts General Hospital and Dr Berkowski's study on. Buprenorphine for RLS. If not, send them to her so she can update her RLS knowledge.
I switched from Pregabalin to Gabapentin and am doing much better on Gabapentin. I don't have the weight gain, I dont have the woozy head or morning drowsiness. It's much better now. Maybe you could consider changing to Gaba, we react differently to each med
I will print out the links below and take them to GP.
Is there any recent evidence anywhere that states that levetiracetam is used for RLS? Can it be taken whilst tapering down from Pregabalin and, according to nhs website, there is no water retention / weight gain symptoms.
Its dreadful that you need to go armed with swathes of information but my exper Of late has been so frustrating
I am considering using wegovy or ozempic to correct weight gain but they don’t consider fibromyalgia or RLS as a hormones condition
Both ARE issued. And the side effects, although similar, do not necessarily happen to everyone.So. Your GP CAN make a straight switch to the equivalent dose of gabapentin and you switch overnight.
But, you may find weight gain affects you in the same way that it has on pregabalin.
I tried gabapentin and had severe diarrhoea and hair loss. I didn't experience diarrhoea on pregabalin.
We all respond differently to each medication.
Has your GP refused a trial of gabapentin?
Book a 20 minute appointment and talk it all through.
It is very frustrating.All you can do is print out all the research evidence and send it to the Pain Clinic, in the hope that they will update their training and knowledge of the treatment of RLS.
If you have fibro it would probably be worth posting your latest blood results on thyroid uk forum. Thyroid conditions often go undiagnosed with people being told bloods are normal. This might explain weight gain and fibro symptoms.
Best bloods to have taken are your TSH, T4, folate, ferritin, vitamin D and B12. Could also ask your GP to test for antibodies. Say that these are the tests recommended by Thyroid Uk. They can be done privately if GP not helpful.
Very reluctant to swap me over to Gabapentin as doctors say it’s the same drug. I know you will disagree but they take some convincing. It’s always a battle
You're on a relatively low dose but it really depends on how long you have been on pregabalin. If you've been on pregabalin for 6 months or more, the general rule of thumb is to reduce by 25mg every 2 -4 weeks... whatever interval is comfortable for you. When you get to the last 25mg, some people find the water titration method helpful. There's information about it online.
Ha. Deep breathing with RLS only works if your running. But seriously, I havent heard many success stories of RLS sufferers being able to sit and meditate for very long. I'd rather be in pain myself.They need to provide you with some proper relief.
You need to come off pregabalin very slowly to avoid withdrawal effects. You should have reduced by 25 mg every 2 weeks. If you had done so you would have had no withdrawal effects. Your doctor was very remiss in not telling you this. I am so sorry you went through it.
Thank you, Sue. I think there is just a huge gap in knowledge and awareness of RLS and, in spite of that, medical professionals tend to imply it’s all in our heads.
I’m going to follow this advice and try to ask the GP to provide a plan. I’m having a full iron panel blood test next week
Welcome to the forum. You will find lots of help, support and understanding here.
I saw your profile but since you didn't indicate what medicines you were on or have tried I will just give you the information I would give a new person on RLS.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers.
You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
THANK YOU FOR THE INFO. I HAVE COME OFF OF GABAPENTIN AND COMING OFF OF PREGABALIN. I HAD CONSTIPATION, DOUBLE VISION, WEIGHT GAIN AND INCREASED HUNGER, MUSCLE ACHES, TWITCHING OR JERKING. I DO NOT WANT TO GO BACK ON. I MAY STOP MIRAPEX AS WELL. I WOULD LIKE TO GO BACK ON CLONAZEPAM AT A DOSE OF 2MG.
I am sorry for that. Unfortunately both can cause undesirable side effects for some. Unless clonazepam controlled your RLS which is rare, I would recommend a low dose opioid like buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals.
If you can't get a low dose opioid another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
By the way it is impolite to write in all caps. I am sure you didn't mean it that way.😀
yes I did it recently. Go on 25 mg capsules. Then cut down by one capsule every two weeks. It’s a slow process but it will work. Each time you drop a tablet it will be rough for a few days . I had rbs. It was horrible. Get your. Go to work you out a plan and see them every couple of weeks. I won’t make out it’s easy it’s not. But every time you drop a tablet there is a great sense of winnning. Rest really slow is the key. Get a duvet box so you can see the reduction in tablets your putting in it. You can do this. Once your off it get rid of any you have in the house, as an addict you’ll always think’ just one won’t hurt’ that feehasnt gone for me I don’t think it will but I’m so proud of myself. Re the weight gain, ( I put on 3 stone) ask your go for Orlistat it will help but excercise and a healthy diet is needed to o. Good luck
During my long battle (much posted on this site) with "Escape from Augmentation" i have been as high as 600mg/day of Pregabalin and it failed to block my RLS. I have over perhaps a year reduced down to 25mg/day which i have kept going simply because there is evidence out there that says pregabalin helps with sleep and anxiety form the low opioid buprenorphine which i now take to block my RLS. i am not sure if 25mg/day is effective and i am thinking about stopping it completely.
Like others i suffered from weight gain and balance issues and so i will be gald to be rid of it.
I am sorry to say it was no an easy ride as sometimes went i reduced too fast I did have some rotten days but not totally unbearable so stick with it.
On weight I am only now starting to feel the benefit.
Unfortunately my story on dopamine agonists (DAs) and augmentation is a long one most of it in my earlier posts. Several persons on this site helped a lot and i suggest you post current meds and get advice on which additional medication you might need.
With your doctors make sure they do NOT steer you towards DAs for your RLS.
When i first tested for ferritin make level was 42 and i thought my severe RLS might have been linked so I have been taking iron bisglycinate for several months and my ferritin is now 91 and i want to get above 100 but even then not sure if it will "cure" my RLS. i think it depends on whether the DAs have damaged my receptors too much or not.
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