Pramipexole and augmentation

[Rooney1dog]

I have been taking 2 X Pramipexole 0.088 mg at night for many years (I am now late '70s). My RLS is steadily getting worse. How can I tell whether this is the expected development with aging or the onset of augmentation? Should I consider changing my medication? So far I have resisted increasing the dose for fear of augmentation but I should dearly love to have better sleep than at present.

[SueJohnson]

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

It is definitely augmentation which means you need to come off it.

Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.

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 if needed.

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, the 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 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 or antacids 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.

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 a dopamine agonist at Https://mayoclinicproceedings.org/a...

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, , dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Joolsg]

Experts are clear. Pramipexole and dopamine agonists all cause severe drug-induced worsening. As you've been on Pramipexole for years- you WILL be suffering augmentation.We see it every day on this forum.

And UK doctors have zero training or knowledge and therefore have no idea how to treat augmentation or help patients through withdrawal.

Follow SueJohnson advice.

RLS-UK website has printable pages on iron therapy and withdrawal under 'useful resources'. Show your GP and ask for the necessary iron panel blood tests and help getting off Pramipexole.

If you have experienced ICD ( gambling, impulse spending, overeating or hypersexuality) on Pramipexole you can take legal action against your doctors for failure to warn of this common side effect.

Let us know what your doctor says- there is a UK legal firm that wants to bring a test case against a UK doctor for failing to warn about augmentation and treat it properly.

And many of us have zero RLS after getting off Pramipexole and Ropinirole. There are better treatments.

You just need to find the right meds/treatment for you. And the right doctor.

[Rooney1dog in reply to Joolsg]

Thank you. HealthUnlocked is proving very useful.

[Munroist]

If the RLS is getting worse at night then the drugs are probably losing their efficacy. This is normally when doctors tell you to increase the dose which may work for a short time but you will end up here again and usually with additional symptoms during the day and in other parts of your body - this is augmentation. The answer is to get off dopamine agonists and if you still need medication afterwards there are other options such as pregabalin/gabapentin or buprenorphine although as an opioid the latter is not always easy to get hold of

Sue's comprehensive answer has everything you need to know. You can also take a look at the rls-uk.org website - look at the pages in the "Understanding RLS" menu. It's worth checking whether you are taking other medications which might make RLS worse or whether there are lifestyle changes including diet which might help.

rls-uk.org/what-is-rls

[Rooney1dog in reply to Munroist]

Thank you. Very helpful. I have an appointment now with my GP to discuss getting off prami and changing to something else.