Does iron deficiency affect RLS?

[Lyndon27]

Since being diagnosed with Anaemia a course of iron tablets seems to improve my RLS. Has anyone else experienced this? I currently take Pramipexole

[Shumbah]

My daughter and I both had an iron infusion

It worked perfectly for my daughter and did not work for me .

If you were going to take iron I would recommend liquid Floravital is a great quality

I assume you have researched the timing of taking it around certain foods etc

I would take it right before bed and add folate B12 , magnesium , vitamin D your evening meal and liquid Irin before bed that brand tastes nice add vitamin C as it helps iron absorption

All the best 🙂

[Lyndon27 in reply to Shumbah]

Many thanks for this advice Shumbah. Will certainly try it out

[Hidden]

Hi Lyndon

Yes, iron deficiency anaemia can cause RLS. In which case, this is known as "secondary" RLS. If this is the root source of your RLS then correcting the anaemia should "cure" the RLS.

However, if you have had RLS symptoms for some while i.e. before any signs of iron deficiency anaemia, then you may also have "idiopathic" RLS which is an inherited tendency for the conidtion. In which case correcting the iron deficiency anaemia, in itself will NOT "cure" your RLS. The anaemia will be acting as a "trigger" making your RLS worse.

Where something is acting as a trigger for RLS removing the trigger (or deficiency) will improve RLS to an extent, but never entirely.

I cannot judge whether you have only secondary RLS or both secondary and idiopathic as your picture is complicated by you taking pramipexole. I have no idea how much you're taking nor how long you've been taking it. It's prescribed for idiopathic RLS.

Iron is a signficant factor in idiopathic RLS, but it has been found that it is Brain Iron Deficiency (BID) that s associated with RLS, not iron defciency anaemia and BID can exist even if anaemia doesn't.

The usual bllood test for iron deficiency anaemia is for haemoglobin, however, with RLS it's usual to have a blood test for "ferritin" as this gives a better indication of BID,

A "normal" level of ferritin is anything above 15ug/L. but 50% of people with RLS find their symptoms improve if their ferritin is raised to at least 100ug/L and even more if it's raised to 300ug/L or higher.

Taking oral iron will correct iron deficiency anaemia, depending on the cause of the anaemia, and if your ferritin is below 100ug/L it will help raise it to 100.

Taking it as Shumbah suggests is a great idea. "Gentle" iron is less lesss likely tlo cause gut problems. In tresltion to this, it can even be taken every other day, rather than daily without any significant reduction in how much is actually absorbed.

Your haemoglobin may rise fairly quickly, but raising ferritin can take months. In addition, raising it any higher than 100 is quite difficult and that's where IV iron infusions come in.

Furthermore, there's no 100% guarantee that raising it any higher than 100 is going to fully effective in any event. Therefore I'd suggest you get your ferriin tested and if it's below 100ug/L, which it most likely will be, then even when you're no longer anaemic, carry on oral iron. Then see how your symptoms are when it's at least 100ug/L before seeking iron infusions.

There are many "triggers" for RLS, these include things such as refined sugar, alcohol and caffeine.. It also includes quite a long list of other medications, so it's worth checking if any other medication you're taking is also making your RLS worse.

Depending on what dose of pramipexole you're taking and how long you've been taking it, it could be, that in addition to the anaemia, it may actually be the pramipexole itself thats making your RLS worse. This is very common and makes pramipexole a very poor long term solution for RLS

[Lyndon27 in reply to Hidden]

Many many thanks for this in depth and knowledgeable answer.

My daily dose of pramipexole is 1.4mg. I’ve been taking this for years now, starting with the minimum and creeping up every couple of years or so. GP tells me that’s the max dose so perhaps it’s time to do something about it. Currently having investigations as to the cause of the anaemia but if iron supplements can help I will Persie it with my GP

[Hidden in reply to Lyndon27]

Hi again

I'm confused by the dose you state i.e. 1.4mg can you confirm this?

Pramipexole comes either as an immediate release tablet or an extended release tablet. The immediate release tablets are licensed for RLS. The extended release tablets are not.

The dose you take depends on how much is in each tablet and how many tablets you take.

I'm sometimes mistaken but I can find no combination of tablets strengths and numbers of tablets that adds up to 1.4mg

The "Official" maximum dose of pramiepxole for RLS is 0.75mg. The nearest to 1.4mg is 1.5 mg which is twice the maxiumum dose,

Your doctor, sorry to say is incorrect.

Here's a link to the UK prescRIbing guidelines for pramipexole.

bnf.nice.org.uk/drug/pramip...

In addition, it's now fairly widelY accepted that even this "official" maximum dose is too high. Depending on which source you read 0.25mg is considered a more reasonable maximum.

The UK National Insitute for Health and Care Excellence (NICE) guidance on the management of RLS states

"Drug dosages should be kept to the minimum required to ease symptoms as the higher the dose, the greater the risk of augmentation."

heres' a link to the NICE guidelines FOR DOCTORS.

cks.nice.org.uk/restless-le...

Look under the section headed "What drugs should I consider to treat restless legs syndrome?"

I'm afraid your doctor appears to be ignorant of both these sources. Should you come to any harm as a consequence, this doctor would potentially be open to charges of medical negligence.

In view of this excessive dose of pramipexole, it's possible that you may be suffering augmentation, which is very common. If you're not, I am very surprised and at hat level of dose it is almopst inevitable that you will.

In which case, part of your worsening symptoms is not just due to anaemia, it's due to the pramipexole.

In which case, I strongly suggest you consider reducing the dose of pramipexole.

Please heed the warnings that it is dangerous to discontinue taking a dopamine agonist (DA) such as pramipexole suddenly. It has to be slowly reduced, gradually and over a period of time. Even then, withdrawal effects may be experienced.

For a low dose, say 0.25 mg this is apparently best done over no less than 3 months. I reduced from 0.75mg, it took me ten months.

I suggest you read up about dopamine agonists, augmentation, Dopamine Agonist Withdrawal Syndrome, (DAWS), and DA withdrawal effects before considering reducing the pramipexole.

You could, if you wish, try to start reducing now. It depends on what strenght tablets you're taking.

My guess is you're probably taking 6 six times 0.25mg tablets. You could try reducing the dose by a HALF a tablet every two weeks, and no less time. If you get signnficant worsening of symptoms and sleeplessness then wait even longer. This regime may be able to help you reduce to 0.75 mg after which you may need to reduce in smaller steps.

Consult your doctor about this.

Your doctor can ignore what you say, and more so what I write, but they cannot ignore what NICE says.

Here's another link you may find helpful

sleepreviewmag.com/uncatego...

[Lyndon27 in reply to Hidden]

Thank you. You have me worried now. Plan to see my GP at the next opportunity. Having read the package leaflet I’m not looking forward to the withdrawal symptoms. That said , I need to sort this .

Regarding your query about slow release; no clues in the leaflet and the box simply says “Pramipexole 0.7mg (1mg) tabs. Two to be taken as directed” Does that help?

Thanks again.

[Hidden in reply to Lyndon27]

0.7mg tablets of pramipexole are immediate release tablets containing 700ug of pramipexole (1mg of pramipexole dihydrochloride). These high strength tablets are intended to be used for Parkinsons Disease since one tablet exceeds the maximum dose for RLS which is 540ug pramipexole (0.75mg pramipexole dihydrochloride). Thats what fooled me, they're not for RLS, they're for Parkinson's disease.

In order to reduce the pramipexole it would be best to get a mixture of of 180ug (0.25mg) and 88ug (0.125mg ) tablets

Your first reduction could be from two 700ug tabs to one 700ug, three 180ug and one 88ug. Then reduce in steps of 88ug Or you could reduce instead in steps of 180ug you'd have to try it to see what happens.

Once you get below 700ug however and definitely 540ug you may need to take smaller steps.

Don't rush it, the slower you take it, the less the withdrawal effects will be. If you reduce it all the way to none at all, I'd say it will take at least a year. If your doctor suggests you can do it faster, think, it will be you experiencing the withdrawals, not your doctor! It's daunting but ulitmately you will be better off.

I'm sure that you can be confident that your doctor is experienced and knowledgeable in dealing wth anaemia. It's actually unsual for most doctors to be able to say the same for RLS.

At some point you may need to think about a replacement for the pramipexole and this would be an alpha 2 delta ligand as mentioned in the NICE guidelines.

In later stages some people find an opiate helps with withdrawals and a benzodiazepine helps with sleeplessness. That does depend on your doctor.

Withdrawal effects commonly include a worsening of symptoms and sleeplessness.

DAWS is rarer, and usually occurs in peiople who have developed an Impulse Control Disorder (ICD) as a result of pramipexole. You would know if you did have an ICD!

If you need any more information, you're welcome here.

[Lyndon27 in reply to Hidden]

Many thanks for all this information. What do you think about gabapentin as an eventual alternative?

[Hidden in reply to Lyndon27]

The standard UK alternative to a DA as identified in the NICE guidelines are an alpha 2 delta ligand. The two mentioned are either gabapentin or pregabalin.

Both work more or less in the same way and have more or less the same side effects.

Gabapentin has a slight edge if you only need a lower strength dose. If you need a higher strength dose pregabalin is better.

Both are effective for most people, but like the DAs they don't work for everyone. They also have side effects, but no worse than pramipexole.

They do not cause augmentation or ICD.

I have been taking gabapentin for nearly two years with good effect and minimum side effect.

I started taking gabapentin, 900mg a couple of months before reducing pramipexole, but I was taking it for nerve pain. I believe it can help reduce withdrawal effects but can't completely eliminate them. It takes 3 - 4 weeks to fully work, unlike pramipexole.

There is only ONE form of gabapentin prescribed in the UK, generic gabapentin and it's licensed for nerve pain, epilepsy and MS. It's also used for RLS, shingles and to prevent migraine. Some members may mention other forms of gabapentin or different forms for different conditions. This doesn't apply in the UK.

I don't think we have "big time physicians" in the UK either!

According to the International Classification of Diseases (ICD 11 - latest version), RLS is a neurological, sleep-movement disorder. For RLS people are usually referred to a neurologist and sometimes a sleep specialist, if it's accompanied by a sleep disorder.

IV iron infusions in the UK, NHS are rarely given for anything but anaemia.

[Lyndon27 in reply to Hidden]

Thanks again. All this information gives me a road map for the next 12 months.

[bill54321]

Recommended ferin test is over 10 but must be over 70 for RLS. Test for Vit.D as well as ferin(iron) The type ferin taken may need infusion. So, you need a big time Physician.

[Lyndon27 in reply to bill54321]

Thanks for the info. Appreciate it

[DicCarlson]

More on iron and RLS from Johns Hopkins... hopkinsmedicine.org/neurolo...

And more on iron test results explained... bloodtestsresults.com/iron-...

[Lyndon27 in reply to DicCarlson]

Thanks for the info. Appreciate it

[TorontoRedMaple]

Hello!

How much iron are you taking per day?

I take 1 x pill (25mg) but have not noticed any real difference.....

Thank you,

Toronto