All fixed, so it seems. Thanks so muc... - Restless Legs Syn...

Restless Legs Syndrome

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All fixed, so it seems. Thanks so much for your advice

howbeit-abroad profile image
10 Replies

Had an iron infusion two weeks ago and my RLS is almost gone.

Just wanted to say thanks to everyone here who helped, especially   Joolsg and   SueJohnson .

I ended up writing up some of my research and yours - comments would be very welcome! henryaj.substack.com/p/how-...

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howbeit-abroad
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Congrats! Are you still on the Sertraline?

howbeit-abroad profile image
howbeit-abroad in reply to

I am, 100mg seemingly without issue - but I plan to reduce it anyway as it causes other side effects and perhaps add in eg Wellbutrin.

SueJohnson profile image
SueJohnson

That's great that your RLS is almost totally gone !!! As for comments on your article: 100 mg of vitamin C is enough - one doesn't need 500 mg. I wish you wouldn't even list dopamine agonists under "4. Hopefully you’re done. If not, consider drug treatments (α2δ ligands, dopamine agonists, low-dose opioids)." If one is already on a dopamine agonist and it is working, that is one thing, but I doubt anybody on this forum would suggest starting them. Otherwise a good summary although I do have one question. Why go from taking iron every night (and it needs to be no closer than 24 hours apart as you mention later) to every other night when ferritin is above 75?

howbeit-abroad profile image
howbeit-abroad in reply to SueJohnson

Thanks, will update. Every other night iron is based on this study: pubmed.ncbi.nlm.nih.gov/314...

SueJohnson profile image
SueJohnson in reply to howbeit-abroad

Right - I am familiar with that, but the reason for suggesting every other day is to avoid it being within 24 hours of each other.

Joolsg profile image
Joolsg

Fantastic news. Delighted to hear you're RLS free.Your treatment algorithm is also very helpful. As Sue says, dopaminergic drugs should only be considered as a last option where other drugs have failed or are contraindicated or the side effects are intolerable.

I suggest you ask your GP surgery to use it for reference to help other sufferers.

Glory2022 profile image
Glory2022

Just wondering if you have been retested to see what your ferritin serum levels are now? I had an iron infusion 3 weeks ago but my RLS symptoms are the same as before the infusion.

howbeit-abroad profile image
howbeit-abroad in reply to Glory2022

Not yet, will probably request an iron panel in a few weeks

I must say the RLS was back again yesterday (not quite as bad, but definitely there along with some twitching) so I guess it's not a straight road to recovery. But hopefully you'll see some results soon; I think it can take up to six weeks for the full effects to be seen.

Do you know what kind of iron you were given and at what dose?

in reply to howbeit-abroad

You have somewhat atypical RLS since you get it during the day, never at night, and you felt it was first triggered by anxiety. Maybe now would be a good time to talk to doc about switching sertraline for Wellbutrin or trazodone.

Glory2022 profile image
Glory2022 in reply to howbeit-abroad

Prescription for Ferinject 1g/20mL Injection was in my iron infusion

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