I have been on the lowest dose of Pramipexole for many years now my legs are fidgety most nights within an hour or so of taking it. I tried taking paracetamol with it, but that’s been very hit and miss in helping. I’m waking up in the night roughly around 4.00am most nights but my legs aren’t fidgety they are either very painful or they ache unbearably, my legs get itchy some nights as well. I’m presuming I’m augmenting, am I likely to find it difficult to get off this smaller dose? I am going to ask the Dr to put me on Pregalbin or gabentapin ( think both those spellings wrong) is one better than the other? I have poor toleration with a lot of medications eg even max strength paracetamol makes me feel spaced out. I had my iron checked about 6 years ago and Dr said it was at right level. I am hoping to get an appointment at the drs to discuss next step so need as much information as I can get on the two drugs, Thanks in advance.
What should I try next?: I have been on... - Restless Legs Syn...
What should I try next?
On your iron, was your ferritin checked? If so what was it. What is normal for most folks is not normal for people with RLS so your doctor saying it was at right level may not have meant for RLS. It needs to be 100 or more. Yes - even though on the lowest dose of pramipexole, you will suffer since you have been on it so long. To come off pramipexole, reduce by .125 mg every 2 weeks or so. If that is the dose you are on, you might want to cut it in 2 and reduce it by that. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. 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 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. I recommend gabapentin rather than pregabalin as it can be increased in smaller amounts. Once you find the dose that works for you, you can switch to pregabalin if you want.
Thanks Sue, I have just had a reply from my email to my doctor, he suggests I try two tablets a night for the next two weeks and then get in touch with him. I have said I am not happy to do that and I have asked if my iron/Ferratin levels could have gone down? The last blood test was not an overnight fasting one and as far as I can remember it was about 100.
Your doctor's advice to double the dose of Pramipexol when it is not working is a classic mistake that many doctors make.
The protocol is to do what Sue has advised.
I strongly recommend that you follow her excellent advice.
You are young enough to benefit greatly from this change-- it won't be easy but plenty have gone that road before you.
We wish you all the very best.
Keep strong.
Thanks, just got another response from Dr suggesting amitriptyline as a replacement. I have since read that this drug makes rls worse, and I thought he knew something about rls. He has agreed to set of iron tests.
I’ve just checked my Pramipexole tablets they are 0.088mg. How will I work out when the 3 weeks point will be before taking gabapentin with it? My Dr has just asked if I would like to start taking it. What opioid do you suggest, it would need to be very low dose as I can’t even tolerate things like codeine. I’ve got a holiday booked for June do you think I’ve any chance of being settled with gabentin by then?
Start taking the gabapentin now. It takes 3 weeks to be fully effective so there is no point in increasing it before the 3 weeks even if you are fully off the pramipexole and your withdrawal symptoms have settled. Since you are only on .088 mg you might not need an opioid. If you do need one you might try tramadol. Or you can just tough it out. Since once you start increasing the gabapentin, you will be doing it every couple of days, you should be fine by your vacation. On the iron test, ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. What in the world was he suggesting amitriptyline as a replacement for? The pramipexole? You might want to refer your doctor to the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...
Thank you it all feels very difficult
We all feel for you in this difficult situation.You are doing a great job in educating yourself and your doctor.
Basically, it is your body and your life. So you will have to find out what is best for yourself.
You have made great strides in the short time you have been with us.
This site is a great resource ,so make the most of it.
Keep strong.👍
Thanks Madlegs 1 , I really appreciate all the help. Me and tablets don’t get on most of the time so I am really nervous about trying something new.
That is a real challenge. Sometimes it pays to try and hang in there , especially with the opioids.I had similar problems with Tramadol and gave it up-- insomnia, itching and so on.
When I changed to Oxycontin I had similar problems, but knew that I had reached the end of my options, so stuck with it and am doing well 7 years later.
Good luck.
Hi, I noticed you are taking oxycodone. Is it working for you? If so, how much do you need to take? It worked some for me, but I was only taking 30-40 mg per day and most of my 24 hours was not covered enough to get regular sleep. Thanks!
Hang in there Elsie.I find reading about everyone’s comments on this wonderful forum when I wake around 3am every night a source of great comfort knowing I am not alone.
I am also VERY slowly weaning off sifrol(started from .250mg) with the aid of codeine (30mg)which I only take around 4am to help me get a few hours of precious sleep.
Unfortunately codeine has only a short life so I only get relief for about 3 hours.Starting Gabapentin(300mg) next week.
I agree you may not need to resort to an opioid as luckily u r on such a low dose.
Thanks Retired Lady I am starting the Gabapentin tonight, I hope your start on it goes well.
Update, pick up Gabapentin tonight, Dr has suggested I stop Pramipexole tonight ( because I am on lowest dose he doesn’t think I need to come off slowly) and start Gabapentin tomorrow, his reasoning is to avoid overlapping them? Start Gabapentin at 100 mg per night and over period of 7 to 9 days increase to 1 tablet 3 times a day. He then wants me to contact him. I have questions but I can’t see him face to face only discuss on line. If I ignore his advice do I just cut tablet in half and then take half a night for how long? Should I add an extra Gabapentin tablet every 3 days. Is Gabapentin always taken 3 times a day. Thank you so much for your help.
If you are not over age 65 increase the gabapentin to 300 mg and then don't increase for 3 weeks. Then increase by 100 mg every couple of days or 3 days. You do not need to take it 3 times a day. You can try discontinuing the pramipexole completely and then if your symptoms become too bad, then just increase by half for a couple weeks.
I think the dose depends on the individual and the doctor. I take 600mg of gabopentin 6 times a day. I know I started slowly but I did start with the 600mg tablet. I needed it for nerve pain as well as RLS so that may have been the difference for me. Good luck!!!
For me, pramipexol was a dreadful drug which actually had many side effects and definitely worsened my condition. You may want to find a neurologist or pulmonologist who has experience treating RLS.
I’ve had excellent results with a newer drug called Horizant. Expensive, but there’s a cheaper form of it called Gabapentin. The latter doesn’t work as well.
Good luck, hope you find some peace from this condition
Good morning!I hade the same problem as you, I started too take iron tablet's, just too se if's should help. And after two mount's it's so much better.
That's my advice take iron tablet's (and I even take pramprexol)
Regards
Kerstin
Hi Elsie , if you are checking h your iron
At night Taking potassium , folic acid and B 12 and Krill oil .
I know it sounds a lot .
I personally think potassium is as important as iron.
It does help with the depth of sleep as dose high dose regular CBD oil.
I am blessed to be able to take Buprenorphine it is my life saver.
I actually have started having the same problem that you have described. So..... last night about 30 minutes before going to bed I got my hand held massage roller out. I massaged both legs and it was quite painful and my legs jerked at times. I guess my muscles were so tight. I also stretched my calves and back muscles. Last night for the 1st time in a while, I didn't have the aching pain along with the leg jerking throughout the beginning of the night. My relief lasted till about 4, like yours, but it at least helped the first part of the night. I also have been on a low dose of pramipexole for many years.
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