Pramipexole

[JMDg]

I am 83 and had Restless Legs years and years ago but for quite a few years I have had what feels like Restless Legs in my lower back. I have just been prescribed 0.088mg Pramipexole and it is working in my back like magic and I am at last able to sleep as well. I am hoping this will continue to work?

[Madlegs1]

You may be one of the lucky few , who get a long time benefit from Pramipexol.

However, do be warned that for many people, Pramipexol is a devil in disguise.

Do take the time to read up about Augmentation - probably on posts somewhere on this page, or Google it.

If at any time you feel the need to increase the dose because the RLS is getting worse ,or going in other parts of your body, Then DO NOT TAKE ANY MORE. Or increase the dose or allow your doctor to change you to another Dopamine agonist.

Get back to us pronto.

Start coming off the Pramipexol and get onto Gabapentin or Pregabalin, with a doctor's agreement.

Have you had serum ferritin checked. It should be over 100.

Do you take any triggering medication such as antihistamines, antidepressants, statins, PPIs?

Let us know what you are on.

All the best.

[JMDg in reply to Madlegs1]

I take just Cocodamol sometimes

[Apricotjam in reply to JMDg]

Me too! It works!

[JMDg in reply to Apricotjam]

Good! How long have you been taking Pramipexole, Apricotjam?

[Apricottoby in reply to JMDg]

Me too!

[Joolsg]

I agree with Madlegs.Pramipexole and Ropinirole and the Neupro patch are no longer first line treatment amongst experts.

Did your GP discuss drug-induced worsening of RLS or the possibility of gambling, overspending, overeating and impulse buying?

Did your GP order full panel iron blood tests to ensure your serum ferritin is above NHS and NICE guidance levels?

If not, that is a breach of duty and your GP can be sued for negligence.

Your GP will know nothing about RLS, as it isn't taught in the UK. But he has to follow NICE and NHS guidance.

So, do ask your GP to read up on the available information and arrange the blood tests.

Raising brain iron by prescribing iron supplements or an iron infusion can resolve most cases of RLS without the need for lifelong meds.

I'm a little concerned that you have been prescribed Pramipexole, because augmentation is common and getting off Pramipexole is hellish for a fit, young, healthy person. For older patients, it can cause exhaustion and falls.

Ask your GP to read RLS-UK website in detail.

He really should not have prescribed Pramipexole. So please consider another appointment to discuss fully the serious complications of drug-induced worsening ( augmentation) and Impulse Control Disorder. It's early days, so getting off Pramipexole now will be a lot easier than in a few months.

Pregabalin or gabapentin or a low dose opioid may be better options for you after raising brain iron levels.

[JMDg in reply to Joolsg]

I have another appointment on 15th March, fortunately. Thanks.

[SueJohnson]

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

Although pramipexole works like magic for awhile as others have said it is no longer the first line treatment for RLS because 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 won't work. In fact one expert believes everyone on it will 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 very strongly advise you to instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. 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 to 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 split the doses with pregabalin) Most of the side effects 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)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Again 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 pramipexole.

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.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, 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, 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.

[SwimLyn in reply to SueJohnson]

Wow- what a brilliant & comprehensive list of do's & don't for all Restless Leggers to be aware of.Thank you so much for this forum as it is comforting to know there are people out there who do care & know about this rogue disease which our drs & specialists have very little knowledge about.BRAVO!! 😀

[JMDg]

Thank you so much. I have a lot to take in before I see the doctor!! I haven't had an iron check. The doctor just said that if my lower back fidgets at night were just like restless legs, but in my back, Pramipexole might be worth a try...

[SueJohnson in reply to JMDg]

Please NO. Do a search above on augmentation and you will see what will almost certainly happen if you go down that path by taking pramipexole.

[Munroist]

It's unusual to have RLS just in your back. Did you check the symptoms against the normal criteria below? Another test is whether the symptoms are relieved by a dopamine agonist like pramipexole and yours does seem to be. However despite the immediate relief, as you will have seen dopamine agonists can lead to worse situations for many people and pregabalin and gabapentin are better options although can have side effects of their own but you don't get the problems with withdrawal if you need to change.

Symptom checker ..

1. A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.

2. The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting.

3. The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.

4. The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.

5. Symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis.

[JMDg in reply to Munroist]

I fit all those points, despite it being in my lower back...

[Munroist in reply to JMDg]

I know someone who just has it in their stomach. It’s very variable.

[Simkin]

I agree with Sue & Joolsg. I had a terrible time coming off pramipexole when it stopped working.I am now on gabapentin.

[JMDg in reply to Simkin]

I think I tried Gabapentin ages ago and I don't think it helped... thanks for all the useful hints, everyone. For the moment, it has been so amazing to be fidget free at night and to sleep..... I - and the doctor and/or pharmacist need wisdom...

[Simkin in reply to JMDg]

Yes what treatment works for one doesn't necessarily work for another.All the best.

[SueJohnson in reply to JMDg]

You may not have taken enough or you may not have taken it in divided 600 mg doses separated by 2 hours. For example if one takes 900 mg at one time, it is equivalent to taking only 540 mg, and it gets even worse at higher doses.

[JMDg]

I haven't taken Pramipexole for very long really, just a few months, I think.

However, yesterday night I decided not to take it and that day, apart from feeling so tired in the day, the restlessness in my lower back began at about 4.30pm and it has gone on all through the night and I have practically had no sleep and am exhausted... It won't leave my lower back and the only other thing I am taking is Co-codamol. I have only had 2 so I will now have 2 more because this is unbearable. I am at my wits' end.

I would like to find a more natural remedy but I haven't done that yet...

I tried Gabapentin and Pregabalin ages ago and neither did anything for me - unless I needed to take them for a longer time...