advice please

[Patters56]

Have only just found this page which is so full of great info, wish I’d discovered it sooner! I have suffered from rls on and off for a long time but the past 18 months it’s nearly every night. It is bad at night and lack of sleep and frustration is driving me mad. First dctr last year gave me sleeping tablets, and I’ve tried to put up with it. Saw another dctr a couple of weeks ago and he put me on Pramipexole but didn’t explain any of the side effects. After reading the info I’m scared to take them. I thought I would take a low dose to see if they helped and book another gp appointment to discuss. I have to say they have helped so much and I’ve had the best nights sleep I’ve had for a long time. It’s tempting to stay on them but I’m feeling I’m only 56 and worried about the long term issues. I have a GP appointment next week and was originally thinking to try and mange myself and maybe ask for some more sleeping tablets to take every so often to give me a good nights sleep. I’ve got magnesium supplements and iron pills and will start to take them. Im going to ask for a blood test to look at my iron levels, I’m worried that my GPmay not like it if I go in telling them what I want but as somebody else said on this forum , they may not be that familiar with rls and you only get 10 mins so I want to make the most of the appointment. It is so tempting to stay on Pramipexole as it’s working but worried about the long term, if I ask for Gabapentin is that Likely to work the same and are there any long term issues. I don’t get pain with my rls just the sensation and not being able to keep still, it starts in the eve so I find it difficult to sit and watch tv without being restless and the sleep issues is affecting my life and relationship, I’m so restless my husband usually sleeps in the spare room! I’ve got a night flight coming up and dreading it as I struggle on them so much. Any advice what I should do? It’s so confusing and it’s so hard to find people who understand how hard it is to deal with. I have found exercise seems to make it worse, if I do a long walk in the day it actually makes it worse! (Sorry for the long message but it’s hard to find people to discuss with that Truely understand)

[Joolsg]

Welcome to the club no one wants to join.Sadly, RLS isn't taught at ANY stage in medical training and Pramipexole, Ropinirole and the Rotigitone patch are still listed as first line treatment.

These drugs were licensed for RLS in around 2004/5 after a 12 week trial. The results were spectacular. As you have found, they work instantly to give relief. Fast forward a year or two and doctors noticed a strange phenomenon. The drugs actually augmented the disease. The drug made symptoms more severe and caused them to move to other body parts.

Top doctors in the USA started to specialise in just RLS. They would see thousands a year. Augmentation became more common. They no longer prescribe dopamine agonists.

However, in the UK, a GP will see probably 10 patients with RLS a year. They therefore continue to follow outdated NHS and NICE guidance. Their formulary book tells them to prescribe Pramipexole or Ropinirole.

You got Pramipexole.

Did your GP take full panel fasting blood tests first? Raising serum ferritin above 100, preferably 200 can resolve the majority of case without the need for lifetime drugs. Did he warn about Impulse Control Disorder? Over eating, gambling, over spending, hyper sexuality? He should have warned you that augmentation and Impulse Control Disorder are serious risks with these meds.

I suggest you write an email asking for full panel fasting bloods, and a switch to pregabalin as you are not comfortable with the very high rates of drug induced worsening of RLS on Pramipexole. You can include links to the Mayo algorithm and UK NICE guidance. Then at your appointment, you can say you are aware of the high rates of Augmentation on Pramipexole.

There is so much information for you to take in.

Start by reading all the posts on Pramipexole. Then the Mayo algorithm. Then RLS UK website.

So many people could be med free if their doctors knew about the effectiveness of iron infusions as first line treatment.

If you live near Cardiff, Dr Jose Thomas at the Gwent Sleep Clinic is one of the few doctors in the UK with knowledge about RLS, iron and the dangers of drugs like Pramipexole.

The more you learn about RLS and treatments, the better treatment you will receive, but you may come across resistance from your GP. Hopefully, thet will be willing to update their knowledge on RLS.

sleepreviewmag.com/sleep-di...

[SueJohnson]

I agree with Joolsg 100%. You do not want dopamine agonists like pramipexole or ropinirole. They are great at 1st but up to 70% of people on them will suffer from augmentation and the longer one is on them the more likely they will damage your dopamine receptors so that the first line treatment now, gabapentin or pregabalin won't work. They can be hell to come off them. Put augmentation i the search bow at the top right of this page to see how people are suffering. Avoid them like the plague.

The link for the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment is here Https://mayoclinicproceedings.org/a... It is the bible for RLS.

When you have your full iron panel and ask for that specifically, Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Gabapentin or pregabalin are now the first line treatment for RLS. They do not work instantly like pramipexole, but you don't have to worry about augmentation. 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. 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 of gabapentin and pregabalin 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) daily." 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).

Taking magnesium at night helps a lot of people.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, using a standing desk, listening to music, meditation and yoga.

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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in

[Farmgurl1]

Hi, I take a very low dose every evening, just one .088mg about 2 hours before bed. For the most part it is very effective, and although I've been prescribed 2 x tablets, I keep it to just the one. Occasionally it doesn't work, for whatever reason...too much wine for example...but I just grin and bare those evening. The good ones outweigh the bad. I've been on this dose for about 5 years now, and I have no intention of coming off it. I would love one day to not have to take them (as I said in a previous post, I'd been experimenting with pot edibles, but they don't seem to do too much for me...except make me relaxed!). I would not worry, and give a low dose a go....life it short, and don't worry too much. Best of luck

[Inkosikazi]

Hello Patters56, I was prescribed Mirapex (pramipexole) for my RLS and it did work, but then I found myself being drawn to casinos. A lot. And I'm not a gambler. So if you find yourself starting to gamble, get off the medication. It takes a while for the gambling craving to subside after stopping the drug. I'm now on a combination of buprenorphine and medical marijuana. That seems to do the best for my RLS (actually, second best after pramipexole) but it takes a while to get going in the morning. Best of luck.

[Clarence1936]

I have taken Pramipexle for several years. I take two 0.5MG tablets. It does not completely get rid of RLS but it helps. I am going to a doctor at Duke Hospital and have been receiving Iron infusions. 3 so far. I still have symptoms of RLS but not as bad. I was advised to take pregabalin but it literately drove me crazy. ht e duke doctor is slowly working me off pramipexle. I sleep better at night but sometimes wake up in the middle of the night with with RLS problems. My doctor was trained at Mayo Clinic and we follow their findings.

RLS has never been cure and I don't think it will until people start to die from it. It just drives you crazy.

[Simkin]

Everyone on this site understands you. That is the joy of this forum.I can tell you that I cannot take sleeping tablets as they make my legs 10 times worse.

[Patters56]

Update

I have been to my gp and she was very kind and understanding. She has given me the form to get my iron tested but did say it would be difficult to get anybody to agree to an iv iron transfusion but let’s wait and see what my bloods come back as first. She has prescribed me gabapentin, at my request, but think I may try to manage it a bit again first by taking iron and magnesium. A different gp prescribed me pramipexole a couple of weeks ago but after reading about it I wasn’t happy with the potential side effects, hence finding this forum!! I have been taking a low dose 1 tablet for a couple of weeks, and it was great, but have stopped taking it as don’t want the long term issues, sure enough the rls was back last night!

My question is I have a 13 hour night flight coming up which I am dreading. Do you think it’s ok to take 1 pramipexole to get me through the flight. Is intermittent use of a low dose ok?

I don’t want to start take the gabapentin yet as I am going on hols and don’t want to risk any side effects, and I also want to see if I can manage it a bit better without medication (just thought I’d get a prescription incase I want to start in them as we know how difficult it is just getting a gp appointment!)

I also read Sue said estrogen (hrt) could make it worse. I def feel mine has been worse since I’ve been on hrt, I even asked the gp last year if it could be made worse by the hrt and he just shock his head and smiled. I’m seeing my hrt nurse next week and think maybe I will stop that , it’s just weighing up what you can put up with and what you can’t!!