I have had RLS for a number of years which had been untreated until now when it’s at the breaking point. I can no longer sleep, it’s that bad and keeps my wife up. When it sets on it sometimes goes into my arms which makes it even harder, does anyone else get this?
just been prescribed pramipexole, tried over the last few days with no real results for me and can now no longer sleep (insomnia). Which obviously as you will be aware makes RLS even worse and now stuck in a cycle. I have only started taking it this week but after reading all the horror stories and the fact that I can no longer sleep easily I am considering stopping.
Any advice from anyone who has been through this as I really don’t know what to do and find it so frustrating as I feel even worse off then I did prior to going to the doctors.
thanks for your time
lee
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LeeP1000
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thanks for coming back to me, when I say no real results I was referring to sleep as it was keeping me up all night. Yes I can say I have no restless legs in the evening but has been replaced with a dull ache and insomnia. So swapped from one to the other. No longer shaking the bed but the pain is immense. So when I say RLS I put these dull aches and pains as well as insomnia under the same remit as it’s a response to this
it runs in the family and my mum and brother have been officially diagnosed. I described all symptoms to the doctor. The uncontrollable twitch in my legs at night, which has been progressively getting worse. The doctor is put me on this based on my described symptoms. I have also under a neurologist who are managing my plan of attack
thanks Madlegs much appreciated. I will do this, have a full set of bloods to be done next week (hate needles so will be fun while they hold me down). Like I said the main problem I have on these is the fact that it’s gone from restless legs to pain. Maybe the pain was there before but not noticed it so much whilst I’m dancing around the bed. But 5 nights on these (only 1 0.88mg pill a day) with no sleep and an exchange of symptoms wasn’t what I was wanting as I really need to sleep
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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.
Pramipexole used to be the first line treatment for RLS but no longer is because up to 70% of people will suffer from augmentation so I would suggest you stop taking it. You are lucky you have only been on it for 5 days so you won't have the terrible withdrawal effects. Instead ask your doctor to prescribe gabapentin or pregabalin which are now the first line treatment for RLS.(Pregabalin is more expensive than gabapentin in the US. You don't say where you live. it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.) 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). 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 as yours obviously isn't or s/he would never have prescribed pramipexole at Https://mayoclinicproceedings.org/a...
I read your response to LeeP1000 and offer the following information concerning my use of many drugs that I used beginning in 2000 after discovering the article Overview Restless Legs Syndrome/Periodic Limb Movement Disorder by Frank Elaty, MD, July 11, 2000. Prior to finding this article I had suffered with RLS since approximately 1957. The disease totally dominated my life and I didn't know why -- and neither did the numerous doctors who I sought out for help. Needless to say it was not a happy 43 years. Anytime I attempted to sit down to read a book, watch television, go to a movie, or attend a concert, my restless did not allow me much more than 5-10 minutes of relief.
Fast forward to 2005 when I tried Carbidopa/Levodopa and it did provide me relief for about 2-3 months, then augmentation kicked in and I searched for something I could take which would sustain me for a longer period of time. In 2007 I started taking Mirapex (Pramipexole) and have been taking it since along with Carbidopa/Levodopa as my medicine for a "drug holiday". However after having a "heart failure" due to an atrial flutter in March 2023 I was put on 5 medicines to help my body to control my heart and to remove an excessive amount of fluids pooling in my lower legs (Finasteride, Metoprotol, Eliquis, Tamsulosin and Torsemide. I was also advised to reduce my use of Pramipexole as it was contributing to my heart problems. But while these drugs were doing what they were supposed to do I found my time of usage to augmentation becoming less and less effective. So when I came across your answer to LeeP1000 I was ready to try something/new.
My lab results as of 4/24/2003 were: Iron 49 ug/dl; TIBC 259 ug/dl; Iron % Saturation 19%; and Ferritan Level 278 pg/ml. So I am ready to try gabapentin. You mentioned starting at the 300mg level and then increasing my dosage until I find the dose that works for me. Do these come in 100mg or 300mg dose? Since I am currently taking 2-3 Pramipexole a day how would you recommend that I transition into new drug. If I get a significant increase in my restless legs would it still be possible to use Cari/Levo as a helper during this time. I am hopeful to have a response to this post as I am seeing my PCM on Thursday, August 24th.
Your ferritin level is fine but your transferrin saturation is a bit low. You might want to have another test as I suggested above to LeeP1000.
Yes gabapentin comes in 100 mg doses which I would suggest you get. They also come in 300 mg and 400 mg which you can switch to later once you find out how much you need. As I mentioned it takes 3 weeks to be fully effective and it won't be fully effective until you are off both the Carbidopa/Levodopa and the Mirapex. However after 3 weeks you can increase to 900 mg taking 600 mg 1 to 2 hours before bedtime and the 300 mg 2 hours before that. I would stay at that level however until you are off the Carbidopa/Levodopa and the Mirapex. And yes you need to get off both.
I would reduce the Carbidopa/Levodopa first by reducing by 10-100 every couple weeks or so, You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. You can cut them in half. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. After you are off it for 2 weeks and your symptoms have settled then reduce the Mirapex. I don't know whether you are in the US or the UK or elsewhere. It would really help it you added that to your profile. In the US the tablets come in .125 mg and in the UK .088 mg. Reduce by half of that every 2 weeks or so as outlined above.
After you are off both and your symptoms have settled you can increase the gabapentin as mentioned above.
Finasteride is fine. Eliquis probably is too although one person said it made their RLS worse but I couldn't find anything that said it did. The same with Tamsulosin. Unfortunately, Torsemide is a diuretic and all diuretics make RLS worse.
Metoprotol is a beta blocker and almost all of them make RLS worse. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol,InnoPran), Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD, Tadalafil a vasodilator that in one study completely eliminated RLS and Tadalafil a vasodilator that treats erectile dysfunction and an enlarged prostate (which you are currently using Tamsulosin for . Discuss these with your doctor.
27 days ago. By the way, you said your ferritin was checked 2003. Did you mean 2023. If so, then you don't need it checked again. However did you follow the directions I gave above - stop any iron including in a multivitamin 48 hours before the test, fast after midnight and take 1st thing in the morning. If not, then the ferritin would not be a true value and it would be a good idea to take again.
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, 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, 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.
from speaking to my doctor it is definitely RLS. As it does run in the family and both my mum and brother have been confirmed with it in its extreme form.
From looking at this other condition which I was unaware of it’s matches the conditions of RLS.
Periodic limb movement disorder involves repetitive movements of the arms, legs, or both during sleep. Restless legs syndrome involves an irresistible urge to move and usually abnormal sensations in the legs, arms, or both when people sit still or lie down.
Being on a plane or a confined space makes it worse, as I get the irresistible urge to move and affects mainly my legs but has come to my arms in the past. Being on a plane I have been given tramadol by my mum and this meant I could have a peaceful flight as this does work well but I believe this isn’t a long term solution. I did mention this to my doctor also.
Hi LeeP1000, I can totally sympathise with you especially when the arms are affected. I have had RLS for about 7 years now and started on 1 Pramipexole and have gradually had to increase to 5 tablets a day over the years, I must stress thought that I did that with my GP's agreement. I must say they have always helped control RLS and hope you persevere with them. I have recently changed to taken 2 tablets at 7.30pm and another 3 at 9pm and find that sees me through the night. I do find though that there is a definite correlation between needing to urinate and the RLS starting but my GP has not heard that this is the case. Good luck and here's hoping the tablets work for you as well. Regards, Mustgonow
I have bad news for you. You are taking 5 tablets and 4 is the maximum. You are suffering from augmentation and need to come off it. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. In your case you have had to keep increasing your dose to get relief. You will have to come off it.
You can start out decreasing by one tablet every 2 weeks. You will have increased symptoms. Wait until the increased symptoms from each reduction has settled before going to the next one. At some point you are going to have to only decrease by one-half a tablet every 2 weeks. You may need to decrease by a smaller amount or over a longer time period. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole and ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. 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 1-2 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 or 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). 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."
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. 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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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, 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, 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.
It's actually a good thing that Pramipexole didn't help! Pramipexole is a very dangerous drug. Just look it up on here.Follow SueJohnson advice. Get your serum ferritin levels up as that is first line treatment and resolves over 60% of cases. We need really high levels- above 100, preferably 200. Some need levels above 300.
In the meantime, once off Pramipexole, ask GP for a low dose opioid. As tramadol has worked for you in the past, it will probably help while you get iron pills/ iron infusion.
Hi Lee , reading stories on here it seems like one medication doesn’t suit all . I have been on pamipexole for years and it has been a wonder drug for me. There was a spell recently when the drug became unavailable and I went through 6 weeks of hell with literally no sleep at all . I tried various other drugs which had no effect and sometimes appeared to make it worse . Thankfully pamipexole appears to be available again and I have got my life back on track . Good luck with the search for the search for the right medication
Yes I also get it in my arms from time to time which can be very distressing and I know others do too. I’m glad you are getting some help and support here and I hope you get some relief from this condition soon .
As above you will see that Pramipexole and dopamine agonists work for most people initially and for some people continue to work with or without increasing the dose. For others (something like 70% of people after 7 years) it eventually causes augmentation and ceases to work. At this point the option is normally a painful and difficult withdrawal (Google DAWS - dopamine agonist withdrawal syndrome) followed by a change to drugs like pregabalin or gabapentin or opioids. However some people then experience refractory RLS which is where the dopamine receptors have been damaged by the dopamine agonist and which can make treatments like pregabalin ineffective and leave you with fewer options, pretty much just opioids.
Current best practice medical advice is to go for pregabalin/gabapentin first and this has the advantage that it doesn't seem to cause damage to the receptors and is also relatively easy to stop so if it doesn't work you haven't lost anything. Pregabalin can come with some side effects which not everyone experiences to the same degree, some find they get oedema, weight gain and most report a degree of "cognitive fog". I took it for a year and found these manageable but it didn't seem to help the RLS.
Given the difficulties associated with augmentation then as you are only just starting treatment and have already found problems with DA's such as insomnia it would seem to me worth stopping and trying the pregabalin/gabapentin first. I'd imagine you are very unlikely have any withdrawal issues from a very short time on DA's.
Not an easy choice and as someone who doesn't yet take meds it's something I will probably have to consider eventually which is why I've given it some thought. All the best.
I can’t offer you any advice with regards to medication. Can obviously only tell you what has helped for myself . I think it is so important too to recognise that by just knowing that other people know how you are feeling helps mentally.
I feel for you as I’ve experienced everything you have posted. Yes it creeps up into my arms and also my neck and abdomen too . It’s horrendous. I go nights on end without sleep. I’m a complex case with lots of other medical conditions and therefore on different medications. I was prescribed pregabalin 18 months ago and this worked wonders - 150 mg at 6pm. It was such a relief to not experience what I had been going through .
I think I am suffering from augmentation at the moment so may have to reconsider my dose. I can feel it creeping back in . I have had excellent advice re medication on this site only a few days ago.
I guess I just want you to know you aren’t alone with this horrendous syndrome. Honestly, as we all know on here it is truly horrendous. I think hard to explain to anyone who hasn’t experienced it too.
I’m so sorry this is affecting you and your wife too. I think you will get some excellent advice medication wise on here . I wish you all the best, I really do .
You are not experiencing augmentation as that can't happen on pregabalin. Since you haven't found the cause of your increased symptoms, you probably need to increase your dose by .25 mg. 150 mg is still a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily."
thank you all for your support and kind words. I must admit for the first time I slept peacefully last night, but am looking to reduce this based on the information found and speak to my doctor next week when I am back in the uk. Thank you all it’s good to have some great support and the knowledge that I am not alone
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