Newly diagnosed

[missyoda]

Not long diagnosed was put on Ropinirole but only lasted 3 weeks, had terrible indigestion and felt my arms getting sore also, doctor has changed me to Pramipexole will that make any difference, I also take Sertraline and Amitriptyline, the latter for sleep but not working very well. Thank you

[SueJohnson]

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

You don't want to be on pramipexole nor Amitriptyline nor Sertraline .

Up to 70% of people will eventually suffer augmentation on pramipexole 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. You need to come off it. Luckily you haven't been on it long.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole reduce by half of a .088 [.125] tablet) (ask for a prescription of these if needed)every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.

Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine)are no longer the first line treatment for RLS. Gabapentin or pregabalin are. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 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.

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 nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. 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 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. 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.

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...

Amitriptyline is a tricyclic antidepressant also used for insomnia but it makes RLS worse for most. Depending on where you live I suggest Lunesta or ambien for sleep which are safe for RLS.

Sertraline is an another antidepressant medication within the selective serotonin reuptake inhibitors (SSRIs) class. It can also make RLS worse. If you are taking it for depression Wellbutrin or trazodone are safe for RLS.

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.

[missyoda in reply to SueJohnson]

Thank you for all your information, I am supposed to be starting Pramipexole on Monday coming as she took she reluctantly took me off Ropinirole after just 3 weeks, not sure if she will listen to any concerns I may have about going on Pramipexole. I live in Scotland.

[SueJohnson in reply to missyoda]

You don't have to take it. In addition to the references Joolsg gave you print out the appropriate sections from the Mayo Algorithm.

[missyoda in reply to SueJohnson]

Thank you

[SueJohnson]

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium. DAs like pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism (high TSH) can make RLS worse so want to bring it up.

You listed anxiety on your profile. Buspar is safe for anxiety.

[SueJohnson]

Trazodone also helps insomnia and anxiety.

[Joolsg]

Totally agree with everything SueJohnson has said.As you now realise, your UK GP knows nothing about RLS or the dangers of dopamine agonists.

He/she should first have arranged the iron tests and raised serum ferritin above 200ųg/l ideally. Then reviewed and replaced trigger meds. Sertraline and Amitriptyline are top RLS triggers. I've just posted another study that confirms this.

So go back to educate your GP and refer them to RLS-UK and NICE guidance which clearly states that Sertraline and Amitriptyline worsen RLS.

Safe anti depressants are trazodone and wellbutrin.

Stop Pramipexole now. It WILL cause the RLS to worsen severely.

Getting off Sertraline and Amitriptyline may be all you need to stop the RLS.

Raising serum ferritin will improve it further and you can then.be med free.

[missyoda in reply to Joolsg]

Thank you for your reply

[Madlegs1]

Unbelievable!🤬

[marsha2306]

Not good choices. You will eventually augment on Pramipexole. In addition, Sertraline and Amitriptyline will make your RLS worse!

[missyoda in reply to marsha2306]

Thank you for your reply