Any help is appreciated

[Whymelord]

Hi,i didn’t know that a person could get a Ferratin infusion,I bought Ferrous Sulfate 200mg at my pharmacy because they said that’s what they sold,I have tried everything that has been suggested to me but nothing really takes the unbearable feeling away.i will try the Tapping on my legs and see if it helps,thanks for all of your information and different treatments suggested.

[Hidden]

What you refer to as a ferritin infusion is I think what somebody has mistakenly called an IV iron infusion. Ferritin is how iron is stored in the body where it's bound to a protein. Raising ferritin levels can treat RLS but it is raised by iron therapy, not ferritin.

Some people are able to get an infusion which means the iron is given intravenously i.e. directly into the blood stream. However this isn't as easy or as simple as taking an oral iron supplement which is what you appear to be writing about.

An IV iron infusion requires a medical prescription and a health professional to administer it.

Oral iron supplements, tablets or capsules you swallow can be bought in a shop.

Ferrous sulphate is probably not the best oral iron supplement you can get, although it's possible that it's the only one a pharmacy sells.

The reason that it's not the best is that it can cause problems with your digestive system e.g. constipation. A better option for this reason is "gentle iron" or ferrous bisglycinate. This is commonly available in health food shops, supermarkets or online.

In addition if you take one or more tablet/capsule each day as the instructions probably tell you to, it might not actually benefit you much. This is because when you take iron orally a hormone, hepcidin, is released which prevents any more iron being absorbed for up to 24 hours. If you take 200mg on day one, if you take another 200mg the following day, you will probabaly absorb less than 4mg. The other 196mg will be wasted.

The iron then should be taken on alternate days i.e. every 2 days NOT daily.

Furthermore, more of the iron will be absorbed if you take the tablet/capsule 30 mins before or 2 hours after eating and drink a glass of orange or take vitamin C at the same time. Some iron supplements have vitamin C added.

You can have a blood test to see how much ferritin you have. If your ferritin level is less than 75ug/L then taking an oral iron supplement as described can help raise your ferritin level to at least 100ug/L This could take several months

However, if your ferritin is over 75ug/L or even over 100ug/L already, then an oral iron supplement is possibly not going to help raise it any further because of hepcidin preventing its absorption.

If you wanted to raise the ferritin level higher this is where an intravenous (IV) infusion will be needed.

As regards trying everything that has been suggested to you, it really does depend on who suggested things to you and what they suggested.

If thinhs have been suggested to you by people with no experience of RFLS or even doctors, it doesn't necessarily mean that what they've suggested is any good, or if it includes everything thast could be suggested,

Iron supplementation is the first thing that could be suggested, but there are other supplements that have been fouind to help with RLS, principally magnesium, vitamin B12 and vitamin D.

If you read other posts on this site then you can see some other things people are trying such as antioxidantas such as alpha lipoic acid or celery juice or amino acids like L theanine

It is also known that there are many things that can aggravate RLS including many medicitions and what you eat and drink may be making your RLS worse.

If you are taking any medications you can see if any of these are making your RLS worse.

You could also keep a diary to record what you eat eaxch day and what your RLS is like. This might suggest to you that your symptoms are worse when you eat certain things.

[Whymelord in reply to Hidden]

Thank you Manerva,your soo right About people who have not experienced rls, it's something you need to suffer from to know how horrible it can be. When I speak to my GP I've come to the conclusion that I know more about this condition than he does, I'm told its probably lack of Iron so he prescribes Galfer iron tablet so I come away from the surgery feeling like it's a waste of time, I am finding this forum really helpful as I can see that everyone here knows exactly what I'm saying. I had a bad night, I did eat a mildly spicy chicken meal and I think it may have made my rls worse. Never had my ferritin levels checked so I'll ask my GP for that next time.

[Hidden in reply to Whymelord]

There are, of course medications whicj can be ptescribed for RLS, if that's something you would consider.

I wonder. if your GP mentioned any.

[Whymelord in reply to Hidden]

Hi, I have only ever been prescribed Pramipexole, each time I visit the gp he tells me its probably the BP treatment I'm taken and so there is really nothing else he could give me. I'm just wondering if the Ferrous bisglycinate that Diccarlson mentioned would be worth a try.

[Hidden in reply to Whymelord]

Firstly, your doctor is ignorant. Pramipexole isn't the only treatment.

Besides pramipexole there are two other dopamine agonists, i.e. ropinirole and rotigotine. These however, have the same issues as pramipexole.

The alternative RLS medicines are the alpha 2 delta ligands, gabapentin or pregabalin.

If pramipexole is no longer working or is causing augmentation, then you could consider weaning off pramipexole and switching to pregabalin.

I suggest you ask your GP for pregabalin. If your GP doesn't believe this can be used for RLS then you can refer him to the UK NICE guidelines for the management of RLS, pregabalin is explicitly stated as being recommended for RLS.

Here's a link

cks.nice.org.uk/topics/rest...

The guidelines also say what the dose of pregabalin for RLS should be which means the GP doesn't even have to think about it

cks.nice.org.uk/topics/rest...

If you live in Eire you may not be able to access these links, unless you use a VPN. If so, let me know and I will copy in the relevant sections.

Your GP may be right in thinking that your BP medication may be making your RLS worse. To say that there's nothing he can do about it is not necessarily true.

What are you taking for your BP?

You might be better discussing this with a pharmacist, not a doctor.

YES, you will find ferrous bisglycinate better than ferrous sulphate. You need to take as I described in my earlier reply to you. I suggest you read this, or read it again.

How successful taking iron will be depends on several factors, one of which is your current ferritin level.

If it's too low, then it could take 3 months or longer to work.

Even then, it doesn't work for everyone for everyone only 50% of people.

Don't expect it to work in a week, that's completely unrealistic. Even an IV infusion won't work that fast.

If you do decide to switch to pregabalin and wean off pramipexole, then start the pregabalin immediately. Be aware it takes 3 - 4 weeks to take effect and the effect might not be noticeable whilst you're still taking pramipexole.

BE AWARE it is dangerous to stop taking pramipexole suddenly.

What dose are you taking now?

You need to gradually and slowly reduce the dose of pramipexole, this can take several months and depending on your current dose up to a year.

If your GP says differently, I'd advise you to ignore him.

[DicCarlson]

Many iron supplements are plagued with a tendency of causing constipation. Ferrous bisglycinate chelate (also called gentle iron, many retail brands) does not cause stomach upset or constipation. It took care of my severe RLS within a week.

[Whymelord in reply to DicCarlson]

Hi,I am on blood pressure tablets which I've read do cause constipation but I've never heard of the gentle iron you talk about, where do I get this I will certainly try them. The very thought of a tablet stopping my rls makes me want to get it today so thank you for this.

[Hidden in reply to Whymelord]

Read my earlier replies

[DicCarlson in reply to Whymelord]

This is the one I use - it is a patented formula by Albion Minerals - there are many other retail brands with different amounts. vitacost.com/vitacost-chela...