Iron Infusion How Long For Improvement

[2islandboy]

Hi, I just had my second Iron Infusion Friday. How long before I might feel improvement in my RLS. I had two Infusions several years ago and the effect was profound, but I can't remember the timeframe. I take 2400mg of Gabapentin, but have breakthrough RL, and would like to drop one of my Gabapentin doses. Thanks

[SueJohnson]

It varies but definitely by 8 weeks.

[2islandboy in reply to SueJohnson]

As always, thank you Sue! I will be patient.

[ChrisColumbus]

The RLS UK paper on iron therapy says: "Clinical response can take up to 6 weeks or longer. Pre-treatment with sedating anti-histamines containing diphenhydramine should be avoided as it worsens RLS. Cetirizine or loratadine are safer options. If RLS does not improve, repeated infusions can be given in at least 12-week intervals...

It is generally accepted that intravenous iron will help alleviate symptoms of RLS in 60% of cases"

[Eryl]

There may never be an improvement. The UK NHS website says "It is unclear whether iron therapy is effective treatment for RLS."

[Elisse3 in reply to Eryl]

It doesn’t help everyone if no improvement then it’s not the reason for your RLS. The NHS is behind on treatments as plenty do see a difference.

[Eryl in reply to Elisse3]

The interesting thing is that inflammation depletes iron and inflammation is often the cause of RLS, so low iron may only be a marker and not the cause.

[ChrisColumbus in reply to Eryl]

Unfortunately, while UK NICE and NHS aren't *always* wrong about everything to do with RLS, they are currently generally years behind the latest RLS research and practice.

As you'll remember, I don't take any RLS meds or iron, but after decades symptoms are now almost totally under control (as long as I don't binge on something I shouldnt!) Thankfully I don't have to cut out as much as you do from your diet!

[Niewiem in reply to Eryl]

true, it did nothing for me

[Tanker1]

Sorry to be a downer but some like me are never helped. I raised my ferritin from 100 to 330 and there was no (zero) improvement in my symptoms.

[ChrisColumbus in reply to Tanker1]

Unfortunately raising ferritin doesn't help everyone. And I always (when measured) had good ferritin levels without iron supplementation, but still had RLS. It was only when I added magnesium and cut down on sugar and caffeine - and cut out aspartame altogether - that I was able to bring RLS under control.

And unfortunately, I suspect (this is just my unproven theory) that most people who took a dopamine agonist for any length of time are likely to need to take either a gabapentinoid or low dose opioid to control RLS symptoms - whatever they do with diet and supplements

[rlsunlocked in reply to Tanker1]

How many mg. of iron in total did you get infused?

[2islandboy in reply to rlsunlocked]

Two infusions a week apart. Each infusion: "ferumoxytoL (FERAHEME) 510 mg of elem iron in sodium chloride 0.9% 127 mL IVPB". This is the recomended dose and prescription from the Harvard Sleep Center, Dr. Winkelman. I had exactly the same two infusions two years ago, with great results. There are other formulations, some old and not great. It has been two weeks since the first infusion and I seem to be just now having some results. Last two nights no RL. We'll see about tonight. Everyone says 6-8 weeks for full effect. I am continuing 2400mg of Gabapentin, 65mg ferrous bisglycinate, 360mg Magnesium glycinate (don't take within three hours of Gabapentin), folic acid and Chinese Herbs - White Peoney Root (excellent studies online). I hope to be able to reduce my Gabapentin. With my last infusions, I reduced my Gaba to 500mg. Good Luck

[2islandboy]

I had two infusions years ago and my RLS stopped. As time went on, I started Gabapentin, which also worked well for me, with no side effects. We are all different, especially when it comes to this nightmare disease. I also take Chinese herbs, homepathic remedies, Magnesium and meditate. Years ago, I tried soap in bed at night and even pantyhose!! We are all desperate, especially at 3 AM. Infusions do work well for many people. I am fortunate to be able to attend Dr Winkelman's Sleep Center at Harvard Medical School, MGH and Infusions are used for some patients, with good outcomes for many people. We are all different...

[SueJohnson in reply to 2islandboy]

My laugh for the day " and even pantyhose" 🤣🤣🤣

[2islandboy in reply to SueJohnson]

I read about the pantyhose on this site (I think). It kind of made sense. But, I'm 6'2'' and muscular. Hard to find my size and the right colour!

[SueJohnson in reply to 2islandboy]

🤣🤣🤣

[Elisse3 in reply to 2islandboy]

Asking for a friend what is the right colour. ?

[2islandboy]

I tried white, but it didn't work and felt like crap. I guess I'll never crossdress. My wife says "again". I sure hope my legs and chest are quiet tonight.