IV Iron Infusion for RLS

[pages2tx]

Have any of you gotten worse after an IV Iron Infusion? I got Infed 1,000mg iron. For the past 2 weeks my RLS has been worse and I'm getting up to pee 4 times during the night. (No, I haven't changed my liquid intake).

Is this a normal reaction? Will things improve ? Is it temporary or am I permanently screwed?

I've had RLS for 59 yrs, I'm 69 now. I've tried every treatment, drug, supplement, you can think of. Most recently Suboxone, but can't tolerate any of them. I've started using the Nidra device approx 1 month ago. No relief from that. I usually have 3 RLS episodes during the day and 5 at night.

My Ferritin was 17. I had blood work done 1 week post infusion and it went up to 750. Total Iron 289, Iron binding capacity 310 and % Saturation 93.

I so regret getting the IV Iron Infusion. Any way to get it OUT or reduce the symptoms? The only supplement I take is Magnesium Glycinate, no meds.

Thanks for your help, I'm venting, I know.

[Joolsg]

It's not a normal reaction. I had an Injectafer infusion, 1000mg in 2019 and it made no difference to my RLS symptoms. They were still very severe.Your reaction is unusual, but you're not permanently screwed.

It will settle and the ferritin will drop very quickly. Mine went up to 850 but within 2 months was down to 450. It levelled off at around 300.

Just drink lots of water and rest and it should settle.

[pages2tx in reply to Joolsg]

Thank you so much for your help!

The peace of mind of communicating with people who have "been there, done that" is huge.

Drinking water as I write this!

[Joolsg in reply to pages2tx]

sciencedirect.com/science/a....

DesertOasis has made an excellent observation. The increased urination is a sign of hypophosmatemia.

Get in touch with your doctors asap.

[pages2tx in reply to Joolsg]

Great article!

I'm definitely pursuing the hypophosphatemia .

Thank you again.

[SueJohnson]

You shouldn't test for 8 weeks after getting an infusion because it will show your ferritin much higher than it really is.

When you test after 8 weeks stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.

If your ferritin isn't above 100 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. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

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 your transferrin saturation is below 20, you may need an iron infusion. 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. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months.

You said you couldn't tolerate Suboxone. What were the side effects you had as many can be controlled?

[pages2tx in reply to SueJohnson]

Thanks so much for your quick response!

I tried Suboxone 2mg sublingual film, cutting it into 1/16 pieces with a ruler and a razor blade. Dr Buchfuhrer had me try it this way. The first day I was OK, the 2nd day after about 3 hrs, I thought I was going to faint (at the time I was sitting and using the computer) I was able to lay down and things resolved after a few hours.

The reason I had my blood drawn so early is because the Nidra device required labs to be done and that was the only time available to me. I told them the results would not be accurate because of my recent IV infusion.

[SueJohnson in reply to pages2tx]

Yes that is a bad reaction.

On the Nidra device my understanding is it can be returned within 4 months.

Is Dr Buchfuhrer your doctor? What advice does he have for you now?

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

[pages2tx in reply to SueJohnson]

Yes, Dr Buchfuhrer has been my MD on and off (mostly off) for approximately 10yrs. He has tried numerous meds and combinations but I'm so sensitive to everything that I wasn't getting anywhere. Some of my reactions were pretty serious: stopped breathing, hallucinations, palpitations, vertigo, faint, etc.

I switched to Alternative Medicine. Spent a fortune and got nowhere. So, Yes, I'm back with Dr. B. I put off doing the IV Iron Infusion for years because I was so scared of a serious reaction.

Anyway, thanks for the info on Dipyridamole. I'm pretty sure it's a blood thinner. Crazy what works and what doesn't. I'll look into it.

I'm trying to give the Nidra device a fair shot, maybe I can give them some constructive advice that will help others.

You are such a great resource!

[SueJohnson in reply to pages2tx]

Wow those side effects were really bad.

[Hidden]

Maybe have your doc check for hypophosphatemia.

[pages2tx in reply to Hidden]

Thank you!

I was reading about hypophosphatemia as a possibility to my frequent bathroom episodes. I will look into it more and contact my MD.

[WideBody in reply to Hidden]

This is the right answer! I came here to add it.

[pages2tx in reply to WideBody]

I'm looking into it!

Thank you so much!

[SkyCop]

In my experience it gets better after a month or two. A LOT Better! In fact it's the thing that has worked best for me. I take 2 capsules of Lyrica and 1 tablet Ropinerole every late afternoon and regular iron infusions. It's the regimen that has worked best for me. I sometimes get up to take more Lyrica during the night. I get up to pee about 2x / night. I also started RLS as a child and have been severe category my whole adult life. Hope this info helps. I don't know why the iron infusions always take so long to "kick"in (pun intended). My heart goes out to you because I can relate to how awful it can be. Just hang in there. Hope you feel better soon. xoxo

[pages2tx in reply to SkyCop]

I so appreciate your input, from someone whose "been there". My MD mentioned it would take 2 months before I see a difference. Not sure why it takes so long either.

I wish I could tolerate meds better, they've helped so many people.

Thanks for the encouragement!

[amrob123]

I had hypophosphatemia following an iron infusion. It was over a year ago so I don't remember the symptoms all that well but I do recall just feeling off. I had to supplement with phosphate and vitamin D. Hypophosphatemia can range from mild to severe. I second the suggestions to have it checked out by your doctor.

[pages2tx in reply to amrob123]

Thank you!

I'm definitely looking into hypophosphatemia. I so appreciate your help!