Iron treatment

[Embroiderer]

I’ve had RLS for decades, getting worse, but actually talked to my GP only yesterday for the first time after reading a long article in the BMJ in March, and keeping a diary of symptoms for the past month. On the International RLS Study Group rating scale I scored 20, which was the top end of moderately severe. My GP is prescribing codeine to begin with ( I’m reluctant to take other meds) and has also suggested iron, which I probably should have initiated myself as I know my ferritin is below 75- not sure of exact figure. I’d welcome advice on which iron preparation and dose - I know it has been discussed in the past, and I was sent an article which I now can’t find! Thank you in advance.

[Hidden]

Ferrous bisglycinate is quite popular. It's also known as "Gentle iron" meaning its effects on your gut aren't as severe.

The recommended way of taking it is -

Take it 30 mins before or 2 hours after eating (i.e. on an empty stomach).

Take a vitamin C tablet or drink a glass of orange at the same time.

Only take a dose once every two days, not daily. You can take a double dose.

These measures improve absorption and reduce gut problems.

[Embroiderer in reply to Hidden]

Thank you, I knew it was a specific iron salt but couldn’t remember which one.

[Joolsg]

You could always try to get an Injectafer iron infusion. IV iron improves RLS dramatically in 60% patients and it is possible to get one on the NHS because several people have managed it. Otherwise, ferrous bisglycinate taken every other night will raise ferritin levels over time, but it will take a lot longer.I wrote to my local haematology department at St George's hospital attaching all the latest research papers and the team agreed the evidence was compelling. Sadly didn't help me but the odds are in your favour.

sleepreviewmag.com/sleep-di...

academic.oup.com/sleep/arti...

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

[Embroiderer in reply to Joolsg]

Thank you very much, I’ll look at all that.

[Munroist in reply to Joolsg]

Hi Joolsg, that's very good timing, thanks! Those links will be very useful. I've just started talking to my GP about an infusion and her initial response was we don't do these on the NHS because there are risks with a large amount of iron in the bloodstream which can be toxic. Can I ask you whether they discussed any risks with you when you had your infusion and what your views were? My GP also suggested starting on dopamine agonists which are pretty much off the table for me at the moment and are not the first line of treatment any more according to NICE I believe. However she is being very reasonable and I feel with some education we may make progress.

[Joolsg in reply to Munroist]

I had absolutely no problems and no side effects and the haematologists made it clear the risks were lower than the monthly infusion of my MS drug.I think it's another case of a GP not knowing all the facts.

I remember searching the Web for infusion side effects and any adverse reactions to Injectafer were the lowest of all other infusions. I'll see if I can find it.

Push for it. I wrote direct to St George's and they had a team meeting first, agreed the evidence was compelling and that they could give tbe the infusion on compassionate grounds. They then told me to get the GP surgery to write a referral letter.

If infusions dramatically improve RLS in 60% it will save the NHS a lot of money as RLS drugs are expensive.

[Munroist in reply to Joolsg]

Thanks, that's helpful.

[involuntarydancer]

It's very encouraging to read of your GP working with you. Especially as she seemed to take your point about the dopamine agonists and also about the iron infusion. Even a few years ago this would have been unheard of. I agree with Joolsg that an iron infusion would be well worth a try. There is a high percentage of sufferers for whom this results in a complete alleviation of symptoms. I seem to recall that the evidence of toxicity is not strong but can't off the top of my head remember what study/article I derived this from.

[michaeledward]

I had RLS type symptoms a few years ago and my hematologist prescribed B-12 supplements (I already was and still am taking iron supplements). I haven't had any such problems since then. I never associated my RLS symptoms as being related to CLL, but with so many people here at healthunlocked having RLS, I am beginning to wonder whether RLS is in any way associated with CLL.