RLS worse after knee replacement - Restless Legs Syn...

Restless Legs Syndrome

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RLS worse after knee replacement

Urmston profile image
9 Replies

I've taken Pramipexole for a long time and it's worked. However, after recent knee replacement surgery (7th Feb), the RLS is driving me mad. I'm up every night after 1 or 2 hours' sleep and end up taking an opioid to settle it.Can the pain from the knee be causing it?

Any advice welcome.

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Urmston profile image
Urmston
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9 Replies
SueJohnson profile image
SueJohnson

Why oh why are you taking pramipexole when you were warned about it a year ago?

Leaving that aside. It is not the pain.

It is common to have RLS become worse after surgery for several reasons. They likely gave you an opioid and instead of having you wean off it just had you stop it and it can take several months for that to settle. Surgery causes inflammation and inflammation makes RLS worse. Blood loss from surgery can cause your ferritin to go down.

Wordsworth99 profile image
Wordsworth99 in reply to SueJohnson

Hi Sue, that makes sense. I’m wondering whether the general anaesthetic given during the operation also causes RLS to flare up for a short period of time. The drug they use may linger in our bodies, perhaps for some time? Have you ever read anything about that? Just a thought.

SueJohnson profile image
SueJohnson in reply to Wordsworth99

It is possible.

juweave profile image
juweave

I had a total knee replacement on 18 January, just 3 weeks before yours. My RLS was terrible for the first 2 weeks but then began gradually to improve as the swelling and inflammation reduced.

I tried an opioid, oxycodone, at one point, but stopped it immediately as the rebound was awful. Now, at 13 weeks post-op, my RLS is almost, but not quite, back to baseline. I take gabapentin and have just increased the dose from 900-1200mg daily. I came off pramipexole about 5 years ago (pre-pandemic) after a nine-month weaning off period. It's the best thing I did re. RLS.

I had my ferritin tested 3 weeks post-op. As it was 107 my GP said it was fine and wouldn't be affected by the inflammation. She said I didn't need iron supplements despite my haemoglobin having dropped below the minimum recommended level, probably due to blood loss during the op.

I then had my ferritin tested by my neurologist (she didn't know about transferrin saturation) at 8 weeks post-op. It was 72 and I've now been prescribed iron tablets. I'd like to get it up to 200 which I suspect will take for ever on the tablets, so I'm going to ask another GP at my practice if I can have an iron infusion. He's shown a bit more understanding of RLS than the first.

My knee still swells so there's still some inflammation there. Apparently it takes from 3-6 months for swelling to subside after a knee op so I'm hoping my RLS will continue to improve as the swelling goes down even further.

I hope yours does, too, Urmston. I'm sure it will. This is a horrible disease and finding what works best for you seems to be a tortuous game of trial and error.

Best of luck!

SueJohnson profile image
SueJohnson in reply to juweave

You may know this but in case you don't. Since you need more than 600 mg take the extra 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. If you later need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

Which iron tablets were you prescribed? If it was Ferrous fumarate and was 210 mg that is fine. Otherwise let me know.

If you can't get an infusion, and it can be hard in the UK, if you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Take it 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 or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months if you take iron tablets or 8 weeks if you get n iron infusion.

juweave profile image
juweave in reply to SueJohnson

Hi Sue, I've got ferrous sulphate 200mg

SueJohnson profile image
SueJohnson in reply to juweave

That is less than the amount usually taken which is 325 mg so you might want to take 2 tablets.

Merny5 profile image
Merny5

I have the same experience after 2 replacements. It took a few months to improve. I think it is the inflammation. Good luck

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Hiya. All I can say is that I have been on 0.18mg pramipexole since being diagnosed with rls about 10 years or so ago and it works for me. I take it 3 hours before bed. From what I read here I am terrified of possible augmentation some day but so far so good so just getting on with things. I have a heart problem other than that I'm reasonably fit and 62 years old.

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