PRAMIPRXOLE

[Lynabe]

I have today been prescribed this after Gaba never worked so dubious of this. I have osteoarthritis and believe RLS can be related to it

[Mongolia2020]

oh no! That is a dopamine agonist. Please read up about dopamine augmentation. That should scare you enough never to take it.

U have heard that although Pregabalin is the same effective drug as gabapentin, sometimes one works when the other didn’t and sometimes pep pple get side effects on one but not the other. It may be worth a try.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

DO NOT TAKE Pramipexole !!! Also don't take ropinirole nor Neupro patch. They are all dopamine agonists. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

I assume by GABA you meant gabapentin. You may not have taken enough or taken it in the wrong way. How much were you taking and when.

Even if gabapentin didn't work there are other medicines you can take.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

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, 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender

[Lynabe in reply to SueJohnson]

Hi thereI was on pramipexole but after only taking couple times my whole body ached and I had heart palpitations so I stopped. Does electrolytes drinks help at all? I've done gabapentin that never worked

Any others I can ask my doctor about in UK.

I have mega stress issues with eldest daughter who is going through such a hard time in life and fact she not speaking g to her sister and I am stuck in the middle is making rsl so much worse

Thank you

[SueJohnson in reply to Lynabe]

If you have an electrolyte imbalance that can make RLS worse. Low electrolytes can cause muscle weakness and spasms. This would result if you have low levels of potassium, calcium and magnesium. But otherwise no.

For anxiety and stress I recommend buspar.

You say gabapentin didn't work. How much did you take and did you take it in divided doses of 600 mg 2 hours apart. According to the Mayo Clinic Updated Algorithm on RLS "Most RLS patients require 1200 to 1800 mg of gabapentin."

[SueJohnson in reply to Lynabe]

If you did take 1800 mg of gabapentin and it didn't work, then another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.

[DicCarlson]

It is so disturbing that docs rely on these horrible drugs and send the patient down a twisted road of misery when simple iron supplements (and other less toxic treatments) could be an effective solution. Sue's advice is spot-on as usual.

[restlessstoz]

Hi Lynabe, I don't think that osteoarthritis is the cause of your RLS as RLS is due to stuff in the brain and not in the joints which are affected by osteo. They do have things in common though and the main one being that both osteoarthritis and RLS are conditions that can happen due to increasing age (although RLS can occur in children and younger adults right through to old age).

What I have found is that when my osteoarthritis is bad, and I have it throughout my body, i the pain in my joints, particularly legs, triggers the restless leg symptoms. If I can keep the pain at bay, the restlessness won't be triggered. That is also as long as the RLS symptoms are being treated. Sue has given you a wonderful list of things to consider. I concur that you should not take pramipexole. It is a nightmare drug which induces hope in the beginning and which later takes you to hell. Read as much as you can on here, and educate yourself about what RLS is and what is helpful as per Sue's initial reply. Then you won't get taken for a ride when you go to the doctors (who sadly don't know and some refuse to learn how to treat us).

Remember that RLS is a syndrome rather than a disease with many causes/triggers and for some it's genetic. This means that what affects one does not necessarily affect another, and what helps one does not necessarily help another. It's often a matter of individual experimentation.

Good luck with your journey.

[Loopylegs]

Hi Lynabe, you will get fantastic advice on this forum, I recommend reading through all the posts here so many things you can try, I would recommend trying co codamol at night (tylex/solpadol) it comes under so many names, at least 60mg at night, and see if you get any relief, I did for a long time at the beginning, I took 300mg of gabapentin too, but as with all advice check with your GP, people with underlying conditions such as asthma need to be careful taking opioids with gabapentin as it can suppress breathing, but I have asthma & I was fine on it. Opioids do work well for rls, but doctors are not mad about prescribing opioids because of their high addiction rate, but definitely steer clear of pramipexole or any of the dopamine drugs, they are a nightmare to come off!