Hi all hope at least some on here are getting some sleep I have been reading these posts and I know everyone is different however I've noticed alot of similar symptoms between different people but one thing I've not seen is anyone talking about their experiences of the first time they took pramipexole or other similar meds. For myself I was so excited to have been prescribed something I really thought this is going to be to great however the very first dose less than 1mg my rls went straight into overdrive at least 50% worse I was so scared for the next night and dose but I was encouraged to give it a chance as it may take a while to start working, it didn't.
I was just wondering if anyone else had this experience.
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brucieb29
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No, No, No !!! Don't start on pramipexole. You will be sorry. It is no longer the first line treatment for RLS. Up to 70% of people on it will eventually suffer from augmentation and getting off it which if it happens will be your worse nightmare. I strongly suggest you ask your doctor for gabapentin which is the 1st line treatment for RLS even though s/he didn't want to. Did you look at the Mayo Clinic Updated Algorithm on RLS you were given the link to? Print out the appropriate sections on pramipexole and on gabapentin to give to her. Be glad pramipexole didn't work for you.
Good grief, yet another doctor who knows nothing about the up-to-date treatment of RLS. Don't go near pramipexole and take notice of the advice Sue has given you.
i was fine on it and it worked a treat for around a year, I have now been changed to ropinirole immediately, wasnt told to come off slowly, just to change, they sadly haven't worked yet and its driving me mad as can't sleep, but I've only been on then a couple of nights, so hopefully they will soon.
Presumably you developed augmentation on the pramipexole. ie. having to take higher doses with worsening symptoms. Your doctor has merely exchanged one dopamine agonist for another and it's highly likely that you will also develop augmentation taking ropinirole. Your doctor clearly doesn't have updated knowledge on treating RLS. I'd suggest reading the other posts on this thread, in particular those of Sue and Jools. I've been down the ropinirole route and I will never go down that road again.
The dosages for pramipexole and ropinirole are different which could be why your symptoms are worse. I don't know the conversion doses, but it may be that your ropinirole dose is too low.
i started about a week ago on 1 x 0.25mg and I'm now taking g 3 a night with still no relief, I can't sleep, I irritable and angry with it, I don't understand all the medical reasoning as to what should ve prescribed and why so I'm finding it very difficult to get thru how bad it is. Its making me feel so down and depressed I don't know what to do, I keep telling told I'm doing it for attention by people I know as I can't keep still, totally fed up.
Dopamine agonists (DA's) affect people in different ways. The side effects people experience differ from one person to another. I'm attaching the latest Mayo Clinic Research paper in the management for RLS and I would urge you to read through it. I appreciate that it may send you cross-eyed with terminology, but it is readable. I would also suggest that you show this to your doctor.
Should you decide to come off ropinirole, then please do so VERY slowly. There are posts on this forum giving detailed advice on how to wean off DA's. Once you have been through the process, the latest suggestion is to try either gabapentin or pregabalin as an alternative to DA's. The Mayo article does refer to this.
It is not easy to wean yourself of DA's as your symptoms will initially worsen during the process but they usually settle down around 7/10 days or so after each reduction in dosage. If the process is too much to bear, then low dose opioids can help.
The conversion rate is 1 pramipexole to 4 ropinirole. If you are not taking that much then I advise you to increase so you are. This should then settle your symptoms. If it doesn't then you are already suffering from augmentation and will need to come off it. If not, rls-insomniac is correct. You will likely soon develop augmentation again. If you develop augmentation, post back here for advice on how to come off it. How much pramipexole were you taking? Have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS. If not, post back here and I can advise you on how to get it tested.
HI Sue I've had nothing checked and I ended up needing around 3/5 a night of Pramipexole. Last night I ended up in tears I was so uncomfortable and pacing in and out of bed again all night, ended up having a bath at 3am, with lavender oil in it, which did nothing to help I'm so tired and depressed right now. Arm I'm taking 3 ropinirole which I must say is worrying me as I don't want to get addicted and have to wean off them. My doctor says I just need to change from one to the other when I become used to them. I live in Guernsey Channel Islands so don't seem to ve many people who know about RLS I'm now 63 and I've had restless kegs for many years now but it's got so bad now I feel like cutting my legs off.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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 advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.
If you want to come off the ropinirole, first take 4 times the amount of ropinirole that you took of pramipexole and wait until that stabilizes. Then reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. OR If you have enough pramipexole, go back to the amount you were taking before you switched and wait until that stabilizes and reduce by .125 mg every 2 weeks or so. 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 ropinirole and pramipexole 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 ropinirole 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. 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." You may need to reduce more slowly or with a smaller amount. 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 especially as you near the end. If you haven't had your ferritin checked, 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 your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and 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.
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 atHttps://mayoclinicproceedings.org/a...
Exactly! Do not even start going down that PRAM road! I wish someone had told me, as we all do on here. I remember when I very first took it, it gave me a headache. Otherwise, after that, it worked great. Until the inevitable! I think we discussed this all with you in another post?!
In a way, it's good that Pramipexole has made your RLS worse because you can discount it and stop taking it. I suspect it hasn't worked because you were on quite a high dose of methadone. .
You have opioid withdrawal induced RLS and it's therefore sensible to stick with methadone/Buprenorphine
Good grief, yet another doctor who knows nothing about the up-to-date treatment of RLS. Don't go near pramipexole and take notice of the advice Sue has given you.
I've been on pramipexole 0.18mg unchanged for about 8 years and not had any issues at all yet. It works well for me I don't know if I am in the lucky 30% or augmentation is around the corner. I'm reluctant to try to come off because my quality if life is good.
The successful response to treatment with a dopamine agonist is actually one of the ways that RLS can be diagnosed. Most people get good relief straight away. Long term use, however, is problematic to say the least. If I were you I would be finding a specialist who knows about RLS as most experts do not recommend DA s as the first line of treatment.
Most "knowledgeable" experts, which unfortunately there are not enough of. Too many are still prescribing dopamine agonists, even in the US. I was prescribed one.
like you said, everyone is different. I’ve been taken pramipexole (4mg a day) for over 20 years and it’s the only thing that works for me. I have tried gabapentin, all the way up to 4.5 grams a day and nothing. I hate to say this but if pramipexole was to be takeoff the market I would no longer exist.
I'm very interested to hear you have good results with Pramipexole. Can I ask you if you have any side effects? how long have you taken it? Are you able to sleep at nights? I've been taking it for 2 years, and I find it is OK, in that I can sleep reasonably well, no kicking, though it's very broken up, and I put up with the madness I get in the evenings by finding things to do where I'm standing not sitting!
I start off well at 0.25mg Pramipexole. Gradually over about 3 years I have to increase the dosage to deal with augmentation, and I have to start taking Gabapentin, which I hate. I get up to 1.25 mg and then the augmentation gets so bad that I have to come off Pramipexole altogether and deal with my RLS in other ways, none of which are good. Then after a few weeks or months (I forget how long exactly it was last time, maybe six weeks) my body has forgotten about Pramipexole, and I am able to start on it again at 0.25mg.
Right now I'm on 1.0 mg + Gabapentin and I'm getting augmentation so I will need to increase my dose. But I've been going for about 3 years since my last Pramipexole break so I'm doing pretty well.
The 4.0mg is a massive dose. I never heard of anyone except a Parkinsons patient taking 4.0mg. If it works for you it might work for me. I should ask my doctor if I can go up to 1.5mg, anyway. Anything to stay away from Gabapentin.
As to bad afternoons and evenings. what my doctor recommends is to start taking Pramipexole in the early afternoon, like 1.00 pm. Just 0.25 mg every two hours. That should do the trick.
I'm so interested to hear these comments about Pramipexole; like you I take 4 mg a day, and though I've not been taking it nearly as long as you, I'm kind of acclimatising myself to it: because my sleep is not too bad, no leg kicking at all, I have decided to put up with horrible late afternoons and evenings with what I guess is augmentation. Can I ask you, do you have these side effects with Pramipexole? How do you sleep?
When I started on it I did get relief straight away - I was on it for about 2 weeks and only had RLS in that time once. However I've since come off it - way too scared of augmentation and it wasn't always 100% fool proof for me anyway, I'd still get it from time to time, so I decided better coming off and looking at my ferritin levels as they're also low - I'll try to fix what's easier first as too many bad reports from from this drug.
Hi - I was initially prescribed the same medication for moderate to severe RLS - I suffered nausea and vomiting the first night I took it. I’m also prescribed nausea medication so the next night I tried having my anti sickness medication and taking the Pramipexole an hour later. I still had nausea so decided I would not use it again. I went back to my GP who arranged for blood tests, start me on iron medication as I have previous history of anaemia and also prescribed Gabapentin which (after advise from Sue) I started at 300mg which I took at about 5pm then another 300mg dose at about 10pm. After 3 weeks my symptoms have been significantly reduced - I’m sleeping through the night for first time in 9 months. My tests did show low iron so I’m going back to have repeat tests in a few weeks to see if my iron levels have increased. If so I’m going to ask GP about starting ti reduce thd Gabapentin - but if symptoms start again I’ll go back to usual dose. Apparently Gabapentin is now the first line treatment for RLS and I can see why 🙂
You can take the full 600 mg of gabapentin at 10 which I am assuming is 1 to 2 hours before your bedtime. If you eventially take more than 600 mg, then you do need to take the additional amount 2 hours before that as it is not well absorbed above 600 mg. If you do try to reduce the gabapentin, do so slowly so you don't have any withdrawal effects.
Ho Sue - I go to bed at 10 so I will try taking 600mg at 7. I won’t attempt reducing until I’ve spoken to my GP. Just want to say thanks again as it was going back to see GP - “armed” with advice I received from this forum and especially you - that I was able to get the help I needed 😁😁😁
Pramipexole gave me horrible nasal congestion, to the point I couldn’t sleep. Was a blessing in disguise because I didn’t know anything about augmentation back then.
do not I repeat do not start this drug. You will regret it !!! It is awful and you will suffer worse because of it. I can’t believe how many doctors are harming people by subscribing it
I have tried many medications for severe RLS. The only one that has worked for me is Tramadol. I was given this med for a back issue a few years ago and low and behold I immediately noticed that it got rid of my RLS! It is a narcotic (but on the bottom of the scale in terms of strength), but I only have to take 1/2 -3/4 of a 50mg tab for it to work which is an extremely small dose. (highest recommended dose is 400 mg). In 2 years I've never had to increase the dose. It is prescribed off label for RLS, and after trying many other meds that didn't work my GP prescribes this for my RLS.
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