Pregnant RLS Oral treatment vs IV

[SophShaw]

Hi fellow night-walkers,

My Ferritin level is 10. My Iron count is going between 112 and 118 on the last few tests. I have terrible RLS - but I did get 2 hours sleep last night...

My GP has said that it would be dangerous to administer an Injectafer while I am pregnant. My obstetrician has prescribed that I take 200mg Ferrous Sulphate 3X per day, orally. I am going to speak to my Obstetrician on 15th Sept and was wondering whether anyone had any research specifically on Pregnancy and IV Injectafer. I found this:

missionhealth.org/wp-conten...

But not quite sure of its validity...

I have reached out to a consultant Haematologist already, but I think what with COVID, things don't seem to be moving particularly fast (understandably).

Any help appreciated!

[Joolsg]

ncbi.nlm.nih.gov/pmc/articl...

This article from Spain indicates that it's safe during pregnancy. I would ask your obstetrician where he/she is getting this information from.

I'll try to find more articles for you. i would also point out that lack of sleep is probably more dangerous fro the baby than the Injectafer infusion.

[Joolsg]

hindawi.com/journals/ogi/20...

It would seem that your obstetrician is talking nonsense. All the research papers I have seen on Injectafer infusions during pregnancy are saying it's safe. I think you should challenge your doctor and send links to the research articles. I'm sorry you are being let down so badly. If it helps- my obstetrician had no idea how to help me during my pregnancy and prescribed Temazepam which drugged me up to the eyeballs but didn't stop the RLS and I fell over every time I moved.

[Joolsg]

practiceupdate.com/content/....

practiceupdate.com/content/....

ncbi.nlm.nih.gov/pmc/articl...

These are the articles showing that alternate day iron supplementation raises iron levels faster than taking 3 times a day.

Again, sorry to contradict your GP and obstetrician but I want you to get the latest info and research papers on raising iron/ferritin levels.

Jools

[SophShaw in reply to Joolsg]

Thank you thank you and thank you AGAIN for all this amazing reading. I am printing it up today and taking it to my consultant Obstetrician on the 15th Sept. just 5 more nights to get through before then!

[DicCarlson]

Your article does seem to have credible references.

Here is an article comparing Ferrous Sulfate with Ferrous Bisglycinate Chelate (oral supplements). Apparently the Bisglycinate does not breakdown in the gastro tract so there are less side effects including stomach upset and constipation, and better absorption.

I think an IV iron would offer immediate relief form RLS.

walrus.com/questions/elemen...

[Joolsg]

I watched Dr Buchfuhrer’s webinar at 3am last night. It’s part of the free webinars for rls.org members (the US RLS foundation).

He confirmed that IV iron infusion has a DRAMATIC Impact on 60% of RLS, 20% good improvement and 20% no difference. Your odds of dramatic improvement from an infusion are therefore really excellent. Fingers crossed.

[LotteM in reply to Joolsg]

Hi Jools, these are amazing numbers. Sad to know we're among the 20% non-responders. Did he give any further info about the RLS- and treatment history and f the people who responded? And did he give more info about pre-and post iron values (ferritin but maybe also others)? I'll also watch the webinar myself soon.

[Joolsg in reply to LotteM]

No - he had about 20 questions to answer in an hour so he only answered briefly. Actually he did say that important to get levels above 250 & if levels drop below that post infusion it’s important to get them back up to see an improvement. It’s worth watching to reinforce all the best practice we know about and hear about on here.

[Joolsg in reply to LotteM]

He also said ferritin numbers can be misleading if you have a mild infection at the time of test and that percentage iron saturation also needs to be above 20%.

[LotteM in reply to Joolsg]

Thanks for the additional info. Good to know and to keep in mind.

[WideBody]

I’ve had the infusion and the benefits are noticeable immediately. However, It still takes awhile for your body to recover and adapt to the newly acquired iron. So the benefits keep coming for 6-8 months. I still had to start oral supplements 8 weeks after my infusion, after being retested.

With your iron so low, I am going to say you may have to do both,

[Hidden in reply to WideBody]

WideBody can you explain on why your body takes time to recover and adapt to the iron infusion,,? Are there some type of side effects...?

[WideBody in reply to Hidden]

I really can’t explain the why. It is all good or at least better than not getting the infusion. It takes time for iron to pass the blood brain barrier as well as for the body to rebuild the iron stores. My Doctor said 4-6 months. I think that was short. But it was all good!

[Heatherlss in reply to WideBody]

Is that 4-6 months before we can expect any kind of improvement ?

[WideBody in reply to Heatherlss]

I saw improvements right away. So yes I knew pretty quickly this was my problem. I continued to see benefits 6-8 months later. What did I see, other than improvements in RLS symptoms? Fingernails got younger (first thing I noticed). Easier to breath, didn't get out of breath all the time. Didn't get dizzy as often. Less anxiety attacks. B

So I did see benefits pretty quickly. But it took months before the full benefits and reduction in RLS including better sleep kicked in.

[rls-insomniac in reply to WideBody]

Hi WideBody. I'm due to have an iv iron infusion in a couple of weeks time. Could you talk me through what happens? How long does it take?, does it make you feel ill? In what way does it take the body to recover? Etc. Sorry to ask all these questions but I'm having to drive to the hospital on my own due to covid restrictions.

Thanks in advance. 😊

[WideBody in reply to rls-insomniac]

I would not worry about it. I rode my bicycle to my infusion. 45km, one way. I had to do it 5 times, I got iron sucrose. Injectafer is so much better, only two trips, plus it supposedly gets into the macrophages and hence the brain better.

The worst part was sitting still for the infusion and how cold my arm got. Bring a heating pad.

[rls-insomniac in reply to WideBody]

Thanks for your reply. Sitting still should be interesting, especially if my legs decide to think otherwise!! 😃.