Pramipexole IR or ER

[bluechipx]

I would like to know if the pramipexole I am taking is IR or ER. The pills are small, round pinkish and have the numbers 9 4, but the 9 looks alot like a lower case g somewhat. When I happen to miss taking it and a few hours later the rls begans kick in and I quickly take my pill and realize it will be two hours before I get relief. I would love to hear that the IR kicks in quickly so I could wait until the symptoms began to take it instead of taking them everyday when I may not need them everyday.

[SueJohnson]

Looking it up, that is just the strength of the tablet - eg 1.25 is 91 so it is immediate release. 94 would be 1 mg

[bluechipx in reply to SueJohnson]

Thank you Sue, unfortunately immediate release isn't very 'immediate'! In a crisis an opiate speeds relief but my new doctor is a doctor that has bent to goverment pressure so getting anything stronger than a baby aspirin is off the table!

[SueJohnson in reply to bluechipx]

Who is your doctor and what city and state do you live in? I may be able to give you the name of a doctor who knows more and may prescribe opioids. In the US it is easy to switch.

If you are getting symptoms during the day you may already be suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. And since you are taking twice the maximum dose of pramipexole which is .5 mg you have obviously had to keep increasing your dose. That means you need to come off it or it will only get worse.

To come off pramipexole, reduce by half of a .125 tablet every 2 weeks or so. (Ask your doctor for .125 tablets or get an inexpensive jewelry scale on Amazon ($11 ) that measures down to .01 gram and shave off a bit of the tablet and measure it so you reduce by 1/16 of your 1 mg tablet.) .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.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. Pregabalin is more expensive than gabapentin in the US. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) Since you are over 65 if you are susceptible to falls the 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 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? That is the first thing a doctor should have done. 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.

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, 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.

[bluechipx in reply to SueJohnson]

I live in Muskegon Michigan. I'm assuming you have rls yourself so how would you describe the discomfort caused by rls? It's not a pain or ache and I can't quite come up with the word that accurately describes the feeling to someone who never had it. I was hoping that I have been taking ER and IR would knock it out quickly. Also in my limited knowledge, it seems like it is more common in scandinavian people, any truth to that? I have discovered a few of the things myself that helped or hurt the condition but your list was really informative!

Do you know if pramipexole is considered a ssri or behaves like one? I'll explain my question in a more detailed post a bit later.

[SueJohnson in reply to bluechipx]

Yes I have it. I augmented on ropinirole but it is now under control with 1500 mg of gabapentin. How people experience it varies considerably. Of course for everyone there is the urge to move the legs and sometimes the arms. For me it was like a cramp moving up the back of my leg or legs and then starting all over again.

Pramipexole is not a SSRI nor does it behave like one but SSRIs make RLS worse for most.

Be glad you weren't taking an ER because that is the equivalent of taking twice the amount in an IR so one would first have to switch to twice the same mg in an IR and it would therefore take twice as long to come off it.

You are right that the incidence of RLS grows as the higher the latitude one lives in.

[SueJohnson in reply to bluechipx]

Dr Joseph "Andy" Berkowski from Ann Arbor, MI who is associated with the RLS Foundation and is an highly regarded RLS expert. You don't need to drive there as he does teleconference appointments. The only problem is he does not take Medicare. He can be contacted via his website at relacshealth.com/blog/why-a... .

There a number of blogs by Dr Berkowski at that site.

[bluechipx in reply to SueJohnson]

Sue, does this site have the option of sending private messaging?

[SueJohnson in reply to bluechipx]

Yes. Go to the person's profile and at the top click on the chat icon.

[SueJohnson]

Are you aware that pramipexole 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. 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...

[bluechipx in reply to SueJohnson]

Wow! I only joined your forum a day ago and have learned more than my doctors have told me in several years. A big thank you!

[707twitcher]

Here's a great recent article by Dr Berkowski: calameo.com/sleeplabmagazin...

I was on pramipexole for 12 years before augmentation set in - resulting in symptoms during the day, not just at night, and needing more medication (went from .25mg to needing .75mg at times). Finding this site convinced me to come off it. For me, using buprenorphine helped this process greatly. Buprenorphine is all I use now for my RLS, and it works great for me. I've tried pregabalin a couple times, but I think I need more time for my dopamine receptors to heal after 12 years of pramipexole.