Iron infusions: I am hoping some of you... - Restless Legs Syn...

Restless Legs Syndrome

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Iron infusions

LanaCSR
LanaCSR

I am hoping some of you can weigh in on this. I have had RLS since 2012 and have tried practically every medicine, Rx and OTC, folklore (the bar of soap...lol), etc., for RLS and the only thing that has consistently helped me is Requip 2 mg at bedtime. Unfortunately, I developed daytime RLS a few months after being diagnosed and, consequently, after starting on Requip. At the time I wasn't on this forum and knew nothing about augmentation. Not even my neurologist who I've seen for several years now has suggested that augmentation could be a part of my problems. But since the Requip still works for me and have stayed at 2 mg at bedtime I have kept taking it as it's the only thing that has helped me at night. For my daytime RLS I've tried so many Rx's for RLS (Mirapex, Horizant, Neupro, etc.) and the only thing that helped me without the awful side effects was strong opioids, but my neurologist won't prescribe them, and my GP won't prescribe them because of all the talk about abusing opioids lately in the news. Even my pain dr will only prescribe me Tramadol at 50 mg 3 times a day, but it doesn't work very well. So that is my history with this miserable condition. Getting to my question, I had 2 iron infusions 2 years ago after finding out my serum ferritin was very low. After those infusions I was completely free of RLS for 2 weeks but then they came right back. I've been getting my ferritin level checked regularly and it remains above 100. So I haven't had another infusion. But I've been complaining to my neurologist recently and he has offered to write me a Rx for another iron infusion. So my question is: Does anyone on here know what is the highest ferritin level that is safe? Because I know it can be dangerous if you have too much iron. Oh, lastly, I forgot to mention that in 2008 I had gastric bypass, and I no longer absorb vitamins and iron, etc., very well by mouth. So even if I take a lot of iron orally, my body just doesn't absorb it to where I benefit from it. Maybe that was the precursor to my eventual RLS? So because of that, iron infusions are in my future for the rest of my life. I'm just not sure how high I should go with this. I feel like the hematologist that did my first 2 infusions doesn't want to go much above 100 for the ferritin level. But I know it was as high as 254 after the infusions (which were about 3 months apart) and I know I had 2 weeks with NO RLS at all shortly after getting the infusions. So I feel like there has to be a benefit with me getting the iron, but how high can I safely go? Sorry for such a long post but I wanted to make sure I covered everything. Thanks guys!! I welcome any and all replies.

23 Replies
Hidden
Hidden

I dont know what is considered the highest dose which is safe for ferritin level, someone else may know. I would have thought your doctor or the Hematologist would know. ? If you dont get a answer from here, then you could email Dr.B on his website he is a RLS specialist one of the best. rlshelp.org

LanaCSR
LanaCSR in reply to Hidden

Thanks Elisse!

Memmy
Memmy in reply to Hidden

Hi, Elisse, my blood results from last week gives the normal amount of ferritin for women between 8 and 114 and after menopause between 12 and 290. That what is written on the results. My ferritin was 96 and the neurologist said I was fine, however Im carrying on taking iron

According to the Restless Legs Foundation, you can go as high as 300, not more.

100 may not be sufficient - the RLS Foundation says that 100 is the minimum for us. You not only have to have the iron, you have to have it in the right place - deep inside the brain.

Our brain-iron stores just slowly vanish - who knows where.

If it were me, I would ask for an infusion and see what happens.

LanaCSR
LanaCSR in reply to Parminter

Thank you Parminter!!

Parminter
Parminter in reply to LanaCSR

Lana, I have been following up your question (as much for myself as for you!), and this is what I understand - iron insufficiency can be tissue-specific, and in RLS Central Nervous System iron can be low while blood iron is not. And in autopsies they have found that we have low iron in the substantia nigra, which is where it all happens - or, in our case, does not happen. Tell your neurologist to put that in his pipe and smoke it! Hell's Bell's, they charge enough.

LanaCSR
LanaCSR in reply to Parminter

Too bad we can't tell the iron where we need it to go...lol

Lash65
Lash65 in reply to Parminter

Thanks for the info. Mine was 86 and my dr didn't want to do an infusion for me. Said my level was good.

Parminter
Parminter in reply to Lash65

Let us hope your doctor listens.

Another thing to take into account is that it may take a long time for the iron to get where it is needed. So although your readings may be fine, it could take six weeks or a few months (depending upon which sort of iron is used) for you to feel the full effects of the infusions.

Apparently, most of the iron goes first to the bone marrow, then to the liver, last of all to the brain. So much of the iron that eventually gets to the brain has gone via the spleen after the old red cells - originally made in the bone marrow - are broken down.

Gosh, this disease gets complicated.

I had infusions ending about two weeks ago. My serum levels went from 20 to 250, but although I feel much perkier and more hopeful, my disease pattern has not changed. I did the homework, and now I realize I must be patient and wait a few weeks. Just at the present, I assume my bone marrow is very grateful! And my liver! Yay!

LanaCSR
LanaCSR in reply to Parminter

Good luck Parminter! Please let me/us know if/when your RLS symptoms decrease or hopefully go away so I can have some guideline when I have my infusion. Looking forward to hearing your progress and wishing you much luck!!

Parminter
Parminter in reply to LanaCSR

Lana, I had almost no sleep last night, and the two nights before.

But since the iron infusions, I somehow have the energy to cope better with the insomnia fallout, I can foresee a day that is not a total disaster.

This is new, although the RLS is, as yet, unchanged.

There is a woman who posts on a US rls forum who gets relief after iv iron infusions get her serum ferritin levels to over 300. She attends Dr. Buchfuhrer who surely knows what he is doing when it comes to rls. This suggests that you can go a lot (A LOT) higher than 100 but obviously I don't have access to this woman's full medical history. I would have thought that the fact that most (but not all) rls sufferers have difficulty maintaining serum ferritin levels means it might not be quite so risky for us to have high iron levels as for the general public as our levels will almost immediately start to reduce again spontaneously (unless of course you are one of the ones where this doesn't happen).

See, that makes so much sense to me, especially when I look back at my ferritin levels before and after the 2 infusions I had a couple of years ago and due to the fact that I got relief from RLS when my levels were over 250 but only last 2 weeks and it looks like the next ferritin test came back in the 100s! Oh, if only I could figure out the magic number to keep my RLS at bay. I'm wondering if I need to get it way up, over 300 just so that when it drops back down as it seemed to do so quickly before maybe the level it drops to will remain high enough to keep the RLS symptoms away....at least for longer than 2 weeks...lol. Thank you for your input!!

One thing that I have found with my rls is that it requires constant experimentation to find the elusive magic formula. As a matter of interest did you take oral iron after your infusion - as I type I realise that it is unlikely - why would you do that after getting an infusion? But maybe given how quickly your iron reduced it would be worth immediately starting oral iron to try to maintain your post-transfusion levels. It would seem to make sense in your case but it is also worth bearing in mind the famous quote: For every complex problem there is an answer that is clear, simple and wrong. Iron can be a tricky substance and hemochromatosis is dangerous.

Good idea!!

Dancer, you're a genius. 'For every complex problem there is an answer that is clear, simple and wrong'. Woohoo! that is my quote of the century! That sounds very Einsteinian - who said it?

I am sitting at my kitchen table after three fruitless hours not sleeping, and now I have my best quote ever. No cloud without a silver lining, in a disease in which there are countless silver linings with fat black clouds ready to eat them.

I have lab reports from Melbourne Pathology (Melbourne Australia, about equal biggest pathology lab here) They state that the normal range is 35 to 500

Mine is about 80 so I am trying to get it up to at least 200 to see if it makes a difference. If not I'll see if I can go for another 100 and by steps up to at least 500

I saw a doctor tonight about this and he has arranged a blood analysis to see what I have achieved so far from tablets.

I am taking the tablets with a mouthful of chewed up Vitamin C every second night

He has agreed to an iron infusion if I am not getting anywhere.

Incidentally I also had a test for blood loss in my stool just in case my iron was being wasted.

If you are doing anything to increase your iron make sure that you get regular analysis of your blood because too much will damage your useful bits like liver and kidneys. My doctor says every six months but it sounds like it might be a good idea to get it soon after an iron infusion to know what effect it had.

Cheers

Graham

Parminter
Parminter in reply to Graham3196

500! How sensible is Australia, everyone else is wimpy by comparison.

With regard to the follow-up test, see my post above about the fact that infused iron goes first to the bone marrow, almost all of it, then to the liver, then the remainder distributed elsewhere, the brain last at 0.1%. The iron that finally gets to the brain follows the creation of red blood cells in the marrow, then the breakdown of aged cells by the spleen, then an improved distribution to the brain. Venerable old iron. So you need to wait awhile. Your serum levels may be terriffic, but the iron may not be deep in your brain.

Your daughter is definitely in trouble, Oral iron supplements will work, but it will take months and months.

Just of interest My daughter has had occasional RLS and I have encouraged her to have iron tablets. The RLS isn't serious so she quickly ignores the old man.

She recently saw a good doctor about something else and the doctor decided to test everything. Her ferritin level was 5 that's not a typo FIVE The doctor said she couldn't understand why she was able to stand up and function normally.

Lets get her up to 200!!! Iron infusion on its way and there is no problem remembering to take her iron tablets. In fact she even took mine!!!! Luckily it wasn't too hard to buy some more.

It will be interesting to see what happens when she gets to something sensible.

Cheers

Graham

LanaCSR
LanaCSR in reply to Graham3196

Oh, wow!! Good luck to you and your daughter and thank you for sharing!!

I have been wondering for quite a while, how low iron in the brain causes the reduced number of receptors for adenosine crucially involved in RLS (following Ferre’s et al 2018 paper). I know about research showing that young rats with a reduced-iron diet after birth develop RLS-like symptoms. But, BUT why can these receptors not get restored - for a prolonged time, or better indefinitely? Or why and how does this (reduced no of receptors causing RLS symptoms) develop sometime later in life? Is there a more or less constant renewal of these receptors? And is brain iron instrumental in the renewal process?

Just thinking out loud.....

Lash65
Lash65 in reply to LotteM

Great questions

Lana. I have been on horizant xl for a couple of years. It, like all others, has stopped working as well and I am sleepless most nights. It never made me sleep well, so Dr. increased dosage and it got better. Then it got worse again. I wish I could help you, but I am about at my roads end with rls. Have had it all my adult life. I don't have pain with mine just restlessness in my whole body now. I do have fibromyalgia and that goes along with it.

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