Having an iron infusion has made my RLS 90% better

[Restless1967]

Hi

I found this site after watching the recent television documentary about RLS.

I thought it was so sad to see people in such agony and I could really relate to them, although my condition was not as severe I too could not sleep, suffered with memory loss, felt so ill I couldn't get up in the morning and yawned all day.

I have suffered for 14 years with the condition and it has got progressively worse. Tried the usual medications and had side effects ( constant urge to shop, weight gain and nausea ) I had heard the link between low iron levels and RLS but my GP said my levels were within the normal range ( 45 ) and just gave me iron tablets. I took these for years with no positive results , it came up slightly but felt no benefits. I was starting to get desperate as I felt so ill in the mornings but still had to get up to work and look after the family . I felt like there was something really wrong with me ( apart from the usual sleep problems and was at a low ebb) I saw my GP and begged him to refer me to hematology at the hospital , he said he would but doubted they would do anything for me .

AnywayIi got my appointment very quickly and they immediately gave me an iron infusion ( Ferinject - Ferric Carboxymaltose ) and said come back in 2 months.

I was not sure what to expect but as soon as the next day I started to feel better. I stopped waking up with that feeling of dread and illness and felt ok ( tired obviously but ok ) and withing the next few weeks an amazing thing happened and my legs started to improve. No pains, no jumpy legs watching TV and no waking in the night with leg pains and pacing the floors .

After 4 months I can honestly say the RLS has virtually gone away. I get the odd twitch and need to stand up and stretch while watching TV but nothing like before and certainly no pains. My iron levels are now in the 300s and I only need to get them checked every 6 months to make sure they are not going down again.

I am sleeping really well and although I do still wake I think this is more habit from the years of RLS as I have no pains or problems with my legs at night now . I am still taking 1mg of reQuip before bed but I am going to start weaning myself off this as I do not feel I need it now.

Anyway I just wanted to let other people know about this and hope it helps someone else.

Good luck !

[Bazzaar]

Well done for pushing your doctor to refer you on. Have you been back to him to tell him how well this has worked for you? The information needs to get out there that this is a treatment for RLS despite tests showing good numbers. Good for normal health maybe, not so for RLS sufferers.

I have had the same experience, I no longer need any dopamine agonist medication (requip, pramipexole, ropinerol) or gabapentine.

It's worth mentioning that if the RLS is better that means it was caused by low dopamine. You will have the double benefit of correct dopamine levels in the brain making you feel better and no restless legs, making you feel better!

[Restless1967 in reply to Bazzaar]

Yes I agree, I will tell my GP and the consultant at the sleep clinic when I have my appointment later this year. I think its terrible that they are not suggesting or offering this treatment, especially as it works so quickly there must be so many other people out there it could help .

[Hidden in reply to Bazzaar]

Yes, yes, we do need to get the word out there. I truly believe that oral iron and iron infusions should be the first line treatment for RLS. I guess this a good point to insert my story since it regards iron. My RLS had been mild and intermittent since childhood. In my 40s I decided it would be a good idea to start taking melatonin. I took 1mg of melatonin and almost immediately developed restless body and didn't make the connection. After a few nights of little to no sleep I looked on the internet and read to just take iron at night. The poster said that "there is just something about that free-floating iron that helps RLS." Since I have IBS I bought a non-constipating form of iron known as ferrous bisglycinate from the health food store and got immediate relief - meaning that night. All was well until one night I ran out and the health food store was closed so I went to the drug store and bought ferrous sulfate figuring I would rather be constipated than sleepless. I totally expected it to work especially since it was 65mg as opposed to my 25mg iron. I took the pill and waited the usual hour, then two hours and nothing. I took a second pill and eventually fell asleep but went right back to the bisglycinate. Then I upped the melatonin to 3mg and the iron no longer worked and I had to take two capsules. I got tired of taking so much and did more research. That's when I read that melatonin can worsen RLS. The day I stopped the melatonin is the day my RLS went quiet.

So that's my tale of woe and intrigue. There are numerous people on here who have gotten relief or near immediate relief with the ferrous bisglycinate.

[Hidden in reply to Hidden]

By the way if I take the iron in the morning or even the afternoon it does nothing for my night time RLS. AND my stomach has to be empty when I take the iron. If you google GillRLS and ferrous bisglycinate you will see a post entitled "Amazing" and like me she got immediate relief. AND for some reason the iron also worked for her daughter who has dystonia.

[Hidden]

A low ferritin level can be a reason for RLS, for some people. Great you got your level right up and your RLS is better. Are you in the UK or USA...? As iron infusions are rare to be done in the UK for RLS.

[Restless1967 in reply to Hidden]

I am in the UK. Strangle the hospital said my H6 level had stayed the same( not sure what that is ?) When i go back to the sleep clinic later in the year I will find out what this is and also tell them how much better I am and suggest they offer this treatment to other people. None of the consultants have ever mentioned this treatment to me .

[Joolsg in reply to Restless1967]

That is brilliant. Whereabouts in the UK. I recently saw Prof Choudhuri's team ( top bods in RLS) at King's London and they said they would not consider iron infusions. Maybe we should be seeing haematologists instead. If your haematologist is in London, I'd be very interested, just in case drugs I'm now on stop working in the near future.

So pleased you are jumpy legs free,

Jools

[Restless1967 in reply to Joolsg]

Hi Jools,

I am in Surrey. Try asking your GP to refer you to Hematology at your local hospital. My consultant is at the Royal Brompton, Sydney Street. London.

Hope this helps

[Joolsg in reply to Restless1967]

Thanks so much for that info. It's really helpful,

cheers Jools

[marsha2306]

So glad for you! I had an iron infusion on March 10 ( my level was 60) and having my ferritin levels checked again on May 10. Then I will begin weaning myself off the 900 mg of Gabapentin to see if it worked. Sure hope so.

[Restless1967 in reply to marsha2306]

Good luck

[Shaft1952]

I have seen a neurologist who specialises in rls & sleep studies. The iron infusion was mentioned when I had my 1st appointment. I am due to see her again in July, by which time I will have also had my sleep studies done. I can ring her secretary anytime and she tells the consultant, and someone gets back in touch if necessary. Glad things are good for you, I also have problems with weight gain & constantly shopping.

[involuntarydancer]

Reading accounts like this just make my day. Thank you so much for posting. Now I am thinking again of a transfusion.

It drives me crazy that my GP surgery will tell me that my results are 'normal' EVERY time I get my serum ferritin levels checked and don't volunteer the figure. The figure is so important to us RLSers.

[Hidden in reply to involuntarydancer]

I get the same thing!! Even though they are low Dr's say they have a lot of patients with the same iron...SO!!!! LOL. So frustrating!