Pramipexole ?

[C82021]

Going to a Neurologist end of month. Question is, if I'm not mistaken, the Mayo Clinic updated Algorithm recommends Pramipexole as a first line treatment, am I mistaken? ( Currently on Pregabalin 300mg with. sururatic reacurance.)

[Joolsg]

You're mistaken.Pramipexole, Ropinirole and Rotigitone are not first line drug treatment in the Mayo algorithm..Pregabalin and gabapentin are first line treatment.

Can you explain what suruatic reacurance is? Presumably you want to switch from pregabalin because of side effects or it's not covering RLS?

[C82021 in reply to Joolsg]

Sorry, auto spell ck. What I meant was two days relief then third day little relief.

[SueJohnson in reply to C82021]

Then probably 25 mg more would probably give you 3 days good.

[ChrisColumbus]

It's slightly complicated as unfortunately the Mayo Clinic and the Mayo Algorithm are not exactly one and the same.

The Mayo Algorithm, which Joolsg references, is the RLS 'bible'. It was written by a panel of experts for the RLS Foundation - including one or two who work for Mayo - and published in Mayo Clinic Proceedings. It says:

"Dopamine agonists are an effective treatment option for RLS and were formerly used for first-line treatment of RLS. However, because of increasing awareness of the high incidence of dopamine agonist–induced worsening of RLS symptoms known as augmentation and the risk for development of impulse control disorders, alpha2-delta ligands should, when not contraindicated, be tried first"

This is what your neurologists should be familiar with or referred to:

mayoclinicproceedings.org/a...

HOWEVER, despite the Algorithm being published by Mayo, the Mayo Clinic website itself - under Treatment - lists dopamine agonists first (while warning about augmentation and impulse control disorders) before saying that gabapentinoids "work for some" and mentioning opioids (although not mentioning buprenorphine). And we've seen a couple of reports on this forum of people going to a Mayo Clinic and being prescribed a dopamine agonist.

Good luck with referring your neurologist to the Algorithm if they are not totally familiar with it.

[SueJohnson in reply to ChrisColumbus]

I wrote to them about that and suggested they change it but never got a response. Very frustrating.

[SueJohnson]

Are you going to Vanderbilt?

What do you mean by sururatic reacurance?

[C82021 in reply to SueJohnson]

Not this visit, going to VA which is right next door. I've heard my DR knows DR Kanika Bagai at Vanderbilt. Your other, question "sururatic reacurance" was auto spell ck error. should have read sporadic reoccurrence. What I meant was one or two good days then the third day severe RLS then repeated.

[Sarasota16]

it is no longer the first line of treatment. Gabapentin and pregablin now are. I still am using .012 pramipexole, and will continue to do so until I augment.

[C82021 in reply to Sarasota16]

Understood, curious though why you would want to augment knowing what you'll go through.By the way I lived in sarasota county for 25 years, nice place.

[Sarasota16 in reply to C82021]

At the moment, if I watch my diet, I have no RLS symptoms. At 79 years old, why fix what is not broken. The withdrawal process will not be pleasant and some of the side effects of gabapentin may not be good either.

[C82021 in reply to Sarasota16]

FWIW: I was on 1800mg Gabapentin with zero side effects, now on Pegabalin 300 mg again fortunately zero side effects, still have some bouts with RLS. About a year ago was offered Pramipexole but was afraid to go that route due to possible augmentation and its side effects.

[P1nkdiam0nd]

pramipexole would seem to be more in favour for rls treatment than pregabalin as there have been some studies that consider pregabalin more problematic to take. However ever drug has side effects and if taking a combination of drugs it these may be a definite pointer to which drug is safer/more effective in an individual case.

[SueJohnson in reply to P1nkdiam0nd]

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

It would help us help you if you would tell us a little about your experience with RLS. Are you taking anything for it? I sure hope it is not pramipexole as I will explain further down.

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.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. And once you suffer from augmentation you have to come off it and that can be hell.

Instead ask your doctor to prescribe gabapentin or pregabalin. 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).] 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).

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 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(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.