I have been on Pramipexole for many years and my RLS is getting worse, with symptoms early in the day and arms and shoulders affected most days
I asked my GP about changing to Gabapentin and he said to just stop the Pramipexole and start on 100mg Gabapentin.
I told him about this forum and took along some of the posts about gradually changing over medication but he was unwilling to take the information on board because he queried the qualifications of those giving advice, (Sue Johnson being one)
I chickened out of changing medication because I was not confident about my doctor's advice so I am still having bad days every day.
How can I convince him to take this forum seriously and deal with my situation properly?
Written by
blue2023
To view profiles and participate in discussions please or .
If he wants something both UK based and more 'official' than posts from very experienced and knowledgeable forum members, have you read and referred him to RLS-UK's recently posted document on dopamine agonist withdrawal?:
If you're on your phone and don't want to jump straight into the PDF, this and other useful resources - including two other new PDFs - are linked from here:
Where do you live? I might be able to give you the name of a good doctor.
You could print out the appropriate sections of the Mayo Algorithm to show him.
You could start reducing on your own without telling him. However since you are suffering I would first increase it so you start from a place where you are not already suffering.
You could get cannabis to help with your suffering as you reduce. It is legal in the UK. According to Joolsg "You have to use an online private pharmacy. I use Sapphire Clinic. You fill out a form, they contact your surgery for medical records. You book a zoom tele appointment, pay £45 & they then send a link to a pharmacy who you pay online. The cannabis is then couriered within a week". vaping will give immediate results."
Many thanks for all replies, they are much appreciated. I think I need to go back to my GP and discuss again how to mange this, taking more information from this forum. If that doesn't work then maybe I should change my doctor. I live in Havant, Hampshire.
You could also show your doctor the appropriate section in the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... However the reduction schedule they suggest is a little too aggressive.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, avoid a heavy meat meal the night before and 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.
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, C, 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
Seriously? I despair. I think you should seriously consider a written complaint to the RCGPs, telling them that your GP advised you to switch overnight from Pramipexole to gabapentin, taking no account of the 'expert' advice on here.GPs in the UK are not taught anything about RLS at medical school or during GP training. They are in NO position to query the knowledge of the members on here, most of whom have studied RLS in detail for years, reading research papers and following the latest evidence based treatment, as set out in the Mayo Clinic Algorithm and the latest American Academy of Sleep Medicine guidance.
However, many GPs are sensitive and, quite frankly, arrogant.
You should definitely file a complaint to the head of the Surgery practice and send a complaint to RCGPs.
We campaigned in 2019, asking them to teach RLS fully to avoid serious problems like this.
You will NEVER be free of severe all over RLS until you follow the advice in here. The last person who ignored the advice on here, and who believed her neurologist, ended up suffering for a further 4 years, unnecessarily..When asked why she gad ignored us, she said she couldn't believe we would know more than her neurologist..She was suffering augmentation AND gambling. By the time she tried to sue her neurologist for negligence, it was too late. You have to take legal action within 3 years of realising Pramipexole causes gambling.
Perhaps tell your GP that hundreds of UK GPs and neurologists have been sued for negligence, for failing to warn patients about Impulse Control Disorder.
There is also likely to be a TV programme. Similar to Mr Bates v The Post Office about dopamine agonists.
It will expose the scale of medical ignorance.
Print off the withdrawal schedule from RLS-UK website, together with the Iron therapy page and show to your GP.
Here's the link. Scroll down under Useful Resources.
Many doctors don’t know or understand about RLS! It is frustrating but something we have to put up with. We may not be qualified but we go through this awful disease, they don’t. Fixing RLS is a very individual thing and not everything works for everyone. Certainly you cannot just come off of pramipexol, it needs to be done slowly. I have had this awful RLS for 69 years and only recently found a mixture that helps me. Pramipexol and Targinact AM and Pm but that may not work for you. Local GP’s struggle with this disease so I would try and get the GP to refer you to a specialist in RLS. I wish you all the luck in the world at least I have some ( not complete) relief from this nightmare!
If I may be so bold, you don’t have to convince your doctor of anything. You seem to believe that unless your doctor is convinced of what is said here, you're required to do it the way he says. That’s not the case. He’s a medical advisor. You pay him. Your doctor works for you. You get to choose which doctor you work with or don’t. If he doesn’t listen to his patients and can’t be bothered to learn about the medication that they’re on, if he doesn’t know that it’s an outdated choice for treating your condition and won’t listen to the fact that it’s worsening your suffering caused by known aspects of the medication that you’re on, or how to wean you off of it and is telling you to do things that are contrary to what you’ve researched and found to be best, I would strongly encourage you to consider finding a doctor who will. Even if you choose to stay with this doctor, (which you may have your own reasons for), you have the right to choose to wean yourself off the pramipexole any way YOU want.
I would higher recommend weaning yourself off of the pramipexole, (which I’ve been on over 20 yrs am at the final phase of weaning off) no faster than .125 mg (1/8th of a 1 mg tablet) every 2 weeks. I did it faster, but the last phase is the hardest and I’ve been stuck here for over a month.
A 100 mg dose of gabapentin is most likely not going to help you at all. I started at 300 mg , 4 weeks ago and am now at 600. If your pcp wants medically verified facts, refer him to the Mayo Clinic’s recently released algorithm on RLS. The standard treatment dose is pf gabapentin is 1,200-1,800 mg. While we all hope it won’t take that much, he needs to be prepared to prescribe what you may need. You need to make sure that you have an understanding of the path that is are best for you and that you can work together, to accomplish those goals. It’s not up to someone else to be convinced of how you choose to care for yourself. It’s your responsibility and your choice. No one else chooses the medication to put into your body, decides when or how much, unless you’re unconscious. Those choices are up to you. Even the choice of who prescribes those medications. I’m attempting to empower you. You are able to choose for yourself what is best for you. If YOU are convinced that a course of action is verifiably the best for you, then you should do what you think is best.
Since you are stuck, you can get an inexpensive jewelry scale on Amazon for $11 that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks
Thank you, Sue. Since the 600 mg of gabapentin still didn't do the trick, my pcp increased me to 900 mg. I figured with 3 weeks at 300mg, & 1 week at 600mg , there was no need to wait 2 more weeks before bumping it up to 900mg. I wanted to get off the pramipexole all together, though. It was a 4 day weekend here so I decided to bite the bullet. I took the 600 mg of gabapentin, waited two hours and took the additional 300 mg (I know I was supposed to do it the other way around), and I skipped the pramipexole. I was only on .25 mg and I'd been down to that for over a month, so, I decided to just stop taking it. I lived! It screwed up my sleep for a few days and there was some kicking but at least now we'll know if the gabapentin is doing what it's supposed to without anything else in the mix. I don't want to be titrating a new medication when we don't know if the results are accurate because I never got off the old one. Even with the kicking that there was, it wasn't anywhere near as bad as usual and it was different. Not sure how to explain it - it just seemed better; less frantic, less urgent, less violent and shorter lived for sure. We'll see how it goes with me taking it at the correct times, (and in the right order!) and see how it goes!
Well, to be honest, my supplementation of everything is suffering because "this should be taken with that, but that isn't supposed to be taken near this, and that should be taken near the other one" and I can't keep it all straight. Pill popping is a full-time job and needs a detailed schedule!! So, if you start hearing Lisa whining that she feels like crap or is having some odd problem or two, you won't have to wonder why! I mean seriously! Iron should be taken with vitamin C but not near vitamin D which should be taken now with K2 instead of calcium, but those aren't supposed to be taken near something else. And the iron has to be taken on an empty stomach, and the magnesium isn't supposed to be taken near my blood pressure medication or was it that the blood pressure medication isn't supposed to be taken near the gabapentin? See? My head is swimming trying to remember! No wonder they invented the multivitamin! No one cared if it worked anymore. They just couldn't keep track of it all. They just threw it all in the same bottle and said, "The hell with it. It has to help something!"
I think the most important one is iron. I like it in the form of ferrous bisglycinate. I’m not sure vitamin C is necessary with this form. Iron is to RLS what an aspirin is to a headache. It should help your symptoms of RLS within about an hour.
I personally think calcium should be taken in the evening with dinner.
And yes, vitamin D, vitamin K2 (I like it in a form called MK7) and magnesium all by day. Day in, day out, these supplements should whip your dopamine receptors into tip top shape. Make everyday a spa day. Sip green tea, go for a walk, take these supplements like they’re a magical elixir. You deserve it!
Ok. I promise to stay on top of the iron. The rest I'll have to worry about in 10 years when I retire! I'm kidding. I'm just going to have to create a schedule and set alarms.
And for those middle of the night awakenings I recommend these EZ Melts Iron that have vitamin c built in. 18mg of iron in the form of carbonyl iron. I feel they work to relieve RLS in under an hour, closer to 30 minutes. They’re on sale right now at Amazon. Not cheap I will say that. $18 for 90.
Hi, my symptoms are hormonal so certain times of the month I take cocodomol with my pramipexole (or Ropinerole as I regularly have supply issues so go between both) it certainly makes a difference as I’m not ready to come off pramipexole yet and it avoids upping the dose.
It will be much easier to come off it when you haven't suffered augmentation.
If it is worse when you are menstruating it is because you are losing blood and that means you are losing iron, so the simpler method is to increase the iron you are taking or taking iron if you aren't.
It also means it is very likely your RLS will be improved and possibly even eliminated by increasing your ferritin. Did you ever have it checked? If so what was it? If not you have probably forgotten the instructions I gave you so I will repeat them here: 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, avoid a heavy meat meal the night before and 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.
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Gabapentin
Ropinirole vs Pramipexole
Weening off Pramipexole to start Gabapentin
Coming off pramipexole going on Gabapentin 
Gabapentin Hell!
