RLS with haemachromatosis

[Edward567]

how come iron improves RLS as I have haemachromatosis (too much iron) and have to take four tablets of pramipexole per day for my RLS?

[Madlegs1]

High Iron levels only help about 50% of RLS sufferers.

I had ferritin at 1500 and still had RLS. No effect at all.

If you are taking 4 Pramipexol, then it is likely you are augmenting.

Do check out Augmentation on this site to find out what to do about it.

Good luck.

[Joolsg]

Iron helps the majority, but not all RLS patients.

If you're on 4 x Pramipexole, the drug is probably worsening your RLS.Top US doctors no longer prescribe dopamine agonists because of drug-induced worsening of the disease.

Look at the RLS-UK website and join as a member. The AGM is in London on 5 October.

Most experts and RLS-UK now warn against Pramipexole and similar drugs as they all severely worsen RLS.

Have you had a review at the surgery recently?

Augmentation WILL happen on Pramipexole. It's where the RLS becomes more severe, starts earlier in the evening/day and spreads to arms and other body parts. The first sign is increasing the dose of Pramipexole.

The RLS-UK website sets out the withdrawal schedule under Useful Resources.

[SueJohnson]

I agree with Joolsg. 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 or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. 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...

I strongly suggest you come off it. If you don't want to now save these instructions for when not if you need them.

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 or magnesium-rich foods, 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)."

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...