How long off mirapex before moving on?

[bluechipx]

A friend with infrequent rls says carbidopa levodopa works almost instantly when symtoms began. Because I mays go several days without rls, I would rather have a med that I can take as needed rather than taking a med daily when most days I don't need it. Is this too good to be true? I'm up to one mg of mirapex daily after starting on one eighth mg about fifteen years ago. I told my doctor that there are better meds than mirapex now and just as the knowledgeable people here have said, doctors are ten years behind because he said if the mirapex is working, stay on it. What to do, what to do?

[ChrisColumbus]

Please wait for advice from people who have been through dopamine agonist augmentation: I tagged Joolsg and SueJohnson on your other post about pramipexole (Mirapex). You do not want to start on carbidopa levodopa.

UPDATE: I see that you've previously had advice from Sue about augmentation, coming off Mirapex etc.

[SueJohnson]

Do your symptoms occur less than twice a week? That is the definition of intermittent RLS. In that case a small dose of carbidopa levodopa is sometimes used. However you would still have to go through the lengthy process of coming off mirapex and since you need a high dose to control your symptoms, a small dose of carbidopa levodopa wouldn't work.

Usually when one has intermittent RLS as I did for years, the symptoms aren't that bad, certainly not enough to need to go up to twice the dose. You do not have intermittent RLS since you are taking Mirapex every day. The days you say you don't have RLS are simply the days the Mirapex is controlling your symptoms.

[Joolsg]

You may have had intermittent RLS when you started Pramipexole 15 years ago, but you will have no idea what your baseline RLS is until you come off Pramipexole.If you're on 1mg, that means the Pramipexole stopped covering your RLS at some point and you kept increasing the dose. That is the first sign of augmentation.

1mg is twice the max FDA dose. Knowledgeable doctors would have advised withdrawal from Pramipexole when it first stopped covering your symptoms.

15 years on a dopamine agonist at high dose may have caused permanent damage.

I suggest you arrange to see a good doctor who is up to date on RLS and start reducing Pramipexole now.

The Mayo Clinic Algorithm is best treatment for RLS, and dopamine agonists are no longer prescribed first line meds.

[bluechipx]

I believe I'm getting the picture clearly about easing off pramipexole. I'm a former lab worker and have accurate analytical balances that read directly to four decimel places. I'm ready to began dropping my dose. A tablet weighs, oddly exactly 200 mg, ten tablets weighed 1999 mg, twenty weighed in at 3999, so how much reduction over what period of time am I shooting for? It was a long road up to the one mg dose that I am currently at so hopefully it will be a gentle ramp back down. I have limited access to opioids (sorry wifey!).

[SueJohnson in reply to bluechipx]

I gave this information to you before but am glad to give it to you again.

To come off pramipexole, reduce by half of a .125 tablet) 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.

Ropinirole and pramipexole 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 it but they are not uptodate on the current treatment recommendations. (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 you are off pramipexole for several weeks 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.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 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[bluechipx]

Sue, I'll have results on my ferritin on my next blood test coming up soon. My doctor isn't going to take it well when he learns I'm going off the pramipexole he prescribed. Is there a way to get the new meds you recommended without a prescription? One of the online pharmacies?

[SueJohnson]

Nope. Show him the appropriate section of the Mayo Algorithm. Since he is in the US he should respect it and be willing to take it's advice.