Tried all the medication available for rls
Pramipexole was useful but stopped working so went onto Neupro which was useless.
Back on pramipexole for 1 month
Gained 7lbs and feel so bloated and sore
Also on buspirone for anxiety, I feel its exasperated it ? Although reading up on it says it doesn’t?
Anyone experienced this ?
Rls Aldo’s in arms ?
Waiting on neurologist appointment, doc said could take a year ?
Welcome to the forum. You will find lots of help, support and understanding here.
No you haven't tried everything - just the ones that are no longer recommended. Dopamine Agonists (DAs) like Pramipexole, Neupro and Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. You are suffering augmentation and need to come off it. To come off pramipexole, reduce by half of a .088 tablet 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. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, 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 as the peak plasma level is 2 hours. 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 divide the doses on 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 of pregabalin)." 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)
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, don't eat a heavy meat meal the night before and fast after midnight. 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. 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.
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, eating late at night, 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 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.
Thank you so much for listening to me .
I feel the gp doesn’t get how bad it is .
My rls starts basically as soon as I stop !
Early afternoon after work . I work as an early years practitioner, always on the go , 8am-1pm .
As soon as I sit down it begins. I get relief from cold water exposure, either in my barrell or the sea .
Hrt did not help me at 18 months no period menopause stage.
I take the following supplements-
Menofriend - will add photo of ingredient.
Vit D3
Hydrolysed collagen , grass fed bovine .
Iron , b12 , folic acid .
Turmeric , ginger .
I have osteoarthritis in most joints too .
Gp stared me on buspirone hydrochloride 5mg 3x a day for anxiety. Been taking it for one week .
Could this be exasperating rls ?
My last iron test - gp said was fine , although I often show as aneamic but not enough to treat ????
Will ask for actual levels and not just “your iron is fine “
Unfortunately I can’t afford to go private for neurology.
Will ask to be put on pregabalin / gabapentin .
What’s the difference?
my ferritin is 136
No data on tsat .
Waiting a year is ridiculous. Can you afford to go private?
The buspirone is not likely to increase your symptoms but since you have only been taking it for one week, you could omit 1 dose for say 3 days, then 2 doses for 3 days and then stop after another 3 days to see if your RLS improves. If you have any withdrawal symptoms such as dizziness, headaches, irritability, nausea, confusion, tingling sensations, tremors, nervousness, muscle cramps, sweating and trouble sleeping more than what you already have then you would need to wean more slowly. However since you have only been taking it 1 week these are unlikely.
The only thing you are taking which is a problem is the Hydrolysed collagen which contains MSG which makes RLS worse for most.
Gabapentin and pregabalin are really just different formulations of the same drug. The only differences are 1) you don't need to divide the doses with pregabalin and 2) Although the side effects are basically the same on both some people find that the side effects that bother them on one do not bother them on the other. I generally recommend one start out with gabapentin because you can increase it with a smaller quantity and then if one wants to once they find the dose that controls their symptoms they can switch to pregabalin if they want to.
As SueJohnson says ,you haven't tried all the treatments for RLS.UK GPs AND most neurologists know nothing about RLS. They are unaware of the Mayo Clinic Algorithm, written by the world's top RLS experts which sets out how to treat RLS properly.
1. First ensure serum ferritin is above 100, preferably 200 by iron pills/ infusions.
2. Review all trigger meds ( anti histamines, anti depressants, statins, beta blockers, PPI meds) and substitute with RLS safe options.
3. If 1 & 2 don't help, start on pregabalin or gabapentin.
4.If 3 doesn't help,prescribe low dose, long half life opioids.
You need to take control, learn ALL you can. Join RLS UK and read the Mayo Algorithm and everything you can on here about Pramipexole, Ropinirole and the Rotigitone patch. They all cause RLS to worsen SEVERELY. This is called Augmentation.
As Sue advises, you have to get off it. Follow her schedule.
It's really, really tough to get off Pramipexole, but once you do, the RLS will settle and be less severe.
Most people on this site have been through augmentation and withdrawal.
There are better treatments out there. It takes time to find the right one.
Arrange 2 weeks off work for when you stop the last dose of Pramipexole, because you'll get little or no sleep at all for days.
Ask for help from friends and family.
I just wish UK doctors would stop prescribing these terrible drugs.
Thank you
I will be looking at rls uk etc
I will be telling my gp to prescribe me gabapentin
I don’t take any of the trigger meds
I did come off pramipexole in the past but the hopeless gps put me on Neupro or ropinerol!
Now I know why they didn’t work . Omg I’m sick of this ! I feel like I’m going mad with rls not only in my legs but my arms too!!
Suffering for over 30 years!!!
Yes. I had augmentation on Ropinirole. It was in my legs, arms ,shoulders, hands and face. Horrendous. GPs were beyond useless. Not only did they know zero but refused to prescribe opioids like tramadol to get me through the brutal withdrawal. Luckily, my MS neurologist stepped in and directed them to prescribe tramadol or Oxycontin. My MS neurologist admitted she had no training or knowledge of RLS, even though 30% of MS patients have RLS because of spinal cord damage. She now listens to me and reads the research I send. She refuses to prescribe dopamine agonists because she saw first hand how terrible they are.
We have to send info and research to our GPs to educate them. It is completely unacceptable.
Dear Rubtnessie,
The words of Joolsg and Sue J are so important especially ..."you must take control yourself" and to do that this forum is crucial because many of us are trying to educate our GPs.
I was having terrible dopamine agonist ("DAs") augmentation problems until i joined the forum and was able to forward plan down a very long and sometimes painful road. Please take their (joolsg & Sue J and others) advice and regularly watch posts on RLS
Good luck
davchar
Good morning Ruby Nessie. That is a terrible story you tell and the suffering is what we all on this Forum have or did have and it’s soul destroying. I’m not going to repeat what Sue and Joolsg have said but they know what they’re talking about so please take their advice. I to had RLS for over 40 years and was prescribed Nupro patches and then Ropinirole and like you suffered from augmentation but didn’t realise it until I joined RLS-UK and attended an on line AGM and will be forever thankful for their advice. I understand that feeling of total helpfulness and not knowing which way to turn, your in a labyrinth and have to find a way out. Anyway I started that journey a year ago now and am totally off Ropinirole and am 2 weeks into taking Progabalin and am starting to feel much much better. I won’t lie to you and say it’s easy it’s not, it’s the hardest thing I’ve ever done but boy oh boy it’s had the best outcome. We all say we just want a normal life, but with RLS we loose sight of what’s normal. Although it’s a long and hard journey that requires determination on your part and a real desire to do this I can say looking back the time has flown by, but this is something that appears to happen when one gets past a certain age.
May I suggest that you write down how your feeling and what your symptoms are and take to your next GP appointment. It can help to get through the anxiety of trying to tell you GP the problems you’re facing which may come out in a jumble and it will focus on the facts, the period of time allowed for an appointment in my case 10 minutes is not long enough, could you book a double appointment which will give you more time. One last thing would you be able to print the Mayo Clinics Algorithm on RLS and it’s treatment, put it in a small file and hand it to your GP. I did that and my GP was most grateful and was going to bring it up at the next practice meeting. This is a slowly slowly catch a monkey way of trying to educate our GPS. Some will take it up some will not but it’s a start.
My very best wishes and you can do this, we are all behind you, keep in touch and let us know how it’s going. HipHop1972
Oxycodone (Targinact) has virtually stopped my RLS symptoms.
Hi. Fortunately my problem was misdiagnosed by GP. I don't have RLS, I had vitamin B12 deficiency. So taking Pramipexole was a mistake. Kindest regards and hope you find reliable medication soon.
As you noticed pramipexole stop working. I’m not sure why you returned to that med. But not only does pramipexole stop working it makes the RLS worse. That’s called “augmentation”. You were lucky to get off the drug without any major problem. Most people will experience DAWS (Dopamine Agonist Withdrawal Syndrome). It can be as difficult to get off pramipexole as heroin or cocaine.
The first line of defense against RLS is called “Horizant”. It is not the same as gabapentin or pregabalin. Chances are however if neither of those two drugs worked neither will Horizant.
It's basically the same drug just formulated differently so it lasts 25 hours.
I tried everything and nothing works so started on cbd oil and it had been a great help
Buspirone immediately set my RLS off. Particularly in the arms. Everyone responds differently. Keep up the good fight
Crohn's flare up and RLS
Restless Legs moving up the body
To up or not to up Gabapentin 
I am new here and from Austria
