The Dreaded Pramipexole: Has anyone... - Restless Legs Syn...

Restless Legs Syndrome

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The Dreaded Pramipexole

Hobscave profile image
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Has anyone experienced augmentation symptoms following even a very low dose of Pramipexole 0.088mg?

I am 73 and still quite active. I started with RLS about two years ago. Intermittent at first, but then worsened such that I was experiencing continuous disturbed nights. Classic symptom of a shaking left leg which was only relieved by going for a mile walk at some ungodly hour in the night.

GP put t down to sciatica, but I stumbled across RLS on the net and I suggested to him that RLS was the problem.He agreed!

I have developed the following routine which is 90% successful at keeping the symptoms away:

1) Taking pramipexole 0.008 and Naproxen 500mg at 8pm.

2) Walking half a mile directly before bed.

3) Doing gym type exercises (leg stretches) very last thing before bed.

4) Using a heat pad over my left hip.

However, I know for certain that RLS is still there. If I get lazy and miss the walk and exercises, the RLS returns. Serves me right for being complacent!

However, I am concerned about possible augmentation. I am wondering if anyone has experienced augmentation even with the 0.008mg dose?

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Hobscave profile image
Hobscave
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5 Replies
Joolsg profile image
Joolsg

Many thousands have experienced augmentation on the lowest dose.Read the pinned post on augmentation and look up augmentation in RLS UK site.

If the RLS is more severe, starts earlier in the day, happens when you're sitting or resting and has moved to other body parts, it's likely to be augmentation.

Try splitting the pill in half and take it in 2 evening doses but bear in mind that will just delay the inevitable.

If it sounds like augmentation, it probably is.

There are lots of posts on here about Pramipexole and augmentation so spend a few hours reading them and you'll see all the advice about first raising your brain iron levels.

See your GP to get a fasting full panel blood test. Serum ferritin needs to be above 100, preferably 200 and serum iron above 60.

GPs in the UK are not taught ANYTHING about RLS. They just look it up in their medicine prescribing book and give patients one of the meds listed.

The problem is that these meds are no longer prescribed as first line treatment by experts.

Gabapentin and pregabalin are first line meds but only after bloods are tested and ferritin levels raised by oral pills or iron infusions.

Show the relevant links to your GP and hopefully he/she will be willing to learn about the disease and help you off Pramipexole if you're augmenting.

mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

I agree with Joolsg. You need to come off the pramipexole. Lets me just add a couple things to what she said. When you see your doctor to ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. On reducing the pramipexole, follow Joolsg's advice. 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. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin. 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 every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

Madlegs1 profile image
Madlegs1

I'm presuming it's the 0.088 dose that you are taking?

Also, you don't say that you are experiencing worse RLS, which would indicate augmentation?

If these are correct, then don't be worrying . Many people take your dose for years , without getting augmentation at all. Other get it within a few months.

You might well be a lucky one.

If you feel that you actually are augmenting, then Jools and Sue have given excellent advice -- as usual!!👍😎

Moonwalker1967 profile image
Moonwalker1967

I used to take that dose and experienced augmentation. Off Pramipexole now.

rlsagain profile image
rlsagain

Hi Hobscave,It could well be augmentation - it happened to me - but it also might be side effects of taking naproxen. Are you taking that for pain? And are you taking lansoprazole, a PPI prescribed alongside naproxen, as a stomach liner to alleviate ulcers caused by naproxen( is there anything that doesn’t have side effects 😫??) I was prescribed both for my chronic back pain and my RLS worsened. I then discovered through this site all PPIs worsen RLS.

Gabapentin was then prescribed for my back pain instead, which coincidentally improved the RLS symptoms (unknown by my GP until I told him), although lately I have experienced possible augmentation with that too…

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