IV iron infusions Safe and Effective for RLS

[Joolsg]

Another study confirms that IV iron infusions are safe and improve RLS symptoms.

Hopefully one day iron infusions will be licensed first line medical treatment.

sciencedirect.com/science/a...

[amrob123]

Thanks Jools. It's crazy that many doctors don't refer for infusions in the first instance. It can save people from having to take all these dreadful meds. An iron infusion was the very first thing my sleep specialist suggested, and that was approximately 12 years ago. Doctors shouldn't even treat RLS (or any other condition) unless they can be bothered to access the most up to date information.

[Littlegran in reply to amrob123]

Thanks Jools. I finally got my iron infusion, insurance approved, on August 27 and September 3. To date, I have not had any restless legs. 👏 It is almost unbelievable. My doctor also has put me on Lyrica. My hope is that this will continue. I really don't know how to act when I can go to bed and wake up having actually slept. My husband says my leg movements have stopped. What is amazing is that I had to ask for this infusion. My sleep doctor did not think it would work. Again, we have to be our own advocates.

[Joolsg in reply to Littlegran]

That's great news.

[SueJohnson in reply to Littlegran]

Terrific! So pleased for you.

[Littlegran in reply to SueJohnson]

Thank you Sue. You have been an incredible source of information along with Joolsg. This forum has been a lifesaver of information, and I am grateful to have found you. So many people with RLS do not know what to do with their symptons. They depend on their pcp who sends you to a neurologist who seems to not know what to do except prescribe DA's.

[DesertOasis in reply to Littlegran]

Congrats Little! Do you know the formula or name of the iron they used for you?

[Littlegran in reply to DesertOasis]

I hope to get a report this week. I will post the answer. My doctor has also ordered a full iron report and a ferritin report.

[DesertOasis in reply to Littlegran]

I have another question. When you were taking the oral iron do you recall the type and time of day you took it?

[Littlegran in reply to DesertOasis]

I tried several but ended up with 65 mg Ferrous Sulfate 325 MG. I took it with the evening meal.

[DesertOasis in reply to Littlegran]

You need to take the iron on an empty stomach about two hours before sleep. The oral iron has the same immediate effect on me as the infusion did with you.

[DesertOasis in reply to Littlegran]

Lastly, how long after infusion did you get relief?

[Littlegran in reply to DesertOasis]

After 2 infusions, I started to sleep and my restless legs stopped. It just happened which is strange because I was so used to being miserable. I just woke up after 9 hours of uninterrupted sleep.

[DesertOasis in reply to Littlegran]

Are you anemic?

[Littlegran in reply to DesertOasis]

No, I am not anemic.

[DesertOasis in reply to Littlegran]

I’ve noticed that those with anemia get that day immediate results from infusions. Others report improvement (rarely) between 2 to 6 weeks, sometimes longer.

[Joolsg in reply to amrob123]

Absolutely agree. Especially as experts believe DAs cause permanent damage to dopamine receptors and that can mean iron therapy will not then work for people.

[Kakally]

excellent! More ammo that has to get out in the wide open….

[LotteM]

Thanks Jules, well spotted.

Unfortunately, it ‘only’ another review, not a new study. Definitely valuable, but I wonder what is really new in it compared to the 2018 review by Allen et all on all iron treatments for RLS, also published in Sleep Medicine). The specific focus (and title) on iron infusions may prove helpful. Another one to get the full text and read and report back.

[Graham3196]

I will have to read this again. My brain hurts!

One of their references is interesting

Volume 42, February 2018, Pages 7-12 Sleep Medicine

Efficacy of ferric carboxymaltose (FCM) 500 mg dose for the treatment of Restless Legs Syndrome

Yong Won Cho a, Richard P. Allen b, Christopher J. Earley

It indicates that a dose of 500mg made no difference whereas a dose of 1000mg was effective. This might explain why some people get relief and others don't. It might be interesting to see if the authors followed up with any more work. One question it raises is whether the size of the dose is directly related to the increase in ferritin level or if something else is affected by the infusion. For example it might be that there is a threshold or that there is increasing effect with increasing dose. Perhaps we should be basing medication not on ferritin level but on some other measurement.

This again raises the question about whether a large dose of IV can really damage my kidneys? Pretty hard to get experimental data because who can guarantee to an ethics committee that the experimenter is not putting the subjects at risk of death by raising ferritin to a high number. What if a dose of 1000mg raises ferritin to 800 or similar? Perhaps the medical researchers should get kidney experts involved.

Just a comment on statistics. The first paper says "Compared to control group, IV FCM decreased PSQI and increased risk of headache but results were non-significant.as compared to the control group." They should say that no increase in headaches etc was observed because they say that the difference they observed was NOT significant. There is no justification for saying the stats showed no significance but we had a "gut feeling" that we know best.

[Bowie4eva]

Thanks, Jools, very interesting and helpful. My RLS has gone crazy at the moment - the few times without it are bliss!! Seeing consultant soon.

Hope this may be helpful to many people affected. X

[BPN28]

that’s great to hear - I’m having my first one next week.

[LanaCSR]

It would be nice if it worked all the time, but I had multiple iron infusions, and they didn't help. 😞

[Joolsg in reply to LanaCSR]

I know. Me too. I suspect many of us may have benefitted if we had not been prescribed DAs first.

[LanaCSR in reply to Joolsg]

I wonder because although I don't quite remember the timeline, after my first infusion, it worked perfectly for 2 weeks. Then when it wore off, I had another one and no change, then a final one and no change...*sigh*

[amrob123 in reply to LanaCSR]

I have had multiple also. I can't say definitely but they seem to improve things by 10 to 15%. Not much but I'll take any improvement! Also, I had a couple of infusions before taking a DA and my response was no different to infusions post DA.