Iron

[Palamino]

Hi I'm on ferrous fumerate 625mg I've been taking 4 a day 2 in morn and 2 in eve . It has helped alot . My doctor isn't happy with this amount so I've lowered it to 3 a day . Now he s saying there is eveidence that taking iron every other day helps it absorb better . I said I would give it a go . Have other people been told this to ? I also take 2 pramiprexole in the eve and magnesium . It hasn't stopped the rls but keeps it manageable .

[Madlegs1]

Your Dr is correct about the iron. Are you taking vit C with it ? Orange juice would do.

It also might be advisable to take the mg separately from the Mirapex by 2 hours, just in case it interferes with absorption.

Good luck.

[Palamino in reply to Madlegs1]

Ok thanks . Yes I take it with orange juice and separate from pramiprexole

[Madlegs1 in reply to Palamino]

That's the magnesium separate!?😊

[Palamino in reply to Madlegs1]

Oh rite ok thanks

[LotteM]

Madlegs is correct. It is a win-win. The iron gets absorbed equally well once every other day compared to 3x or 2x daily AND less problems with constipation.

[Palamino in reply to LotteM]

Ok cheers

[Docker]

I get severely bad rls in my legs, arms and hands and sometimes, when I'm really bad, in my face.

I've tried everything sports massage, diet change, acupuncture, countless drugs (pain killers, nerve blockers, dopamine agonists), iron infusions.

The only things I've found that work are cannabis, in small amounts. Or an iron infusion that gives relief for months.

Notes on iron infusion...

My ferritin level was 104 and 108.

I believe the range goes 1 up to 500.

I've heard of people having as low as 4.. !

After having an iron infusion my level went up to 354. Giving me complete relief for me symptoms.

[Parminter]

What does '2 pramipexole' mean, exactly? And has it gone up from 1 pramipexole over time?

If so, then you are in danger of augmenting, so please take care that it does not increase further.

[Palamino in reply to Parminter]

I've been on 2 x 0.088mg for sometime . I've had ropinerole and gabapentin In the past and have augmented . I am aware of augmentation it's been bearable for a while but last nite I had an awful nite whether it was because in my head I knew I hadn't taken the iron who knows . Rls has a mind of it's own. I've had it since I was a child I'm now 54 I didnt know wot it was until about 10yrs ago and believe me I've tried everything. My doctors helpful and interested for a while and then I think he gets fed up trying new things . But it's a lifelong torture for us they dont get that

[Parminter in reply to Palamino]

Palamino, have you been given an opioid yet, or are your doctors opioid-shy?

With severe familial RLS, which I also have, opioids are the only way to go if nothing else works. And at a certain age doctors may stop freaking-out about the dangers of addiction, which are pretty low with the RLS-brigade.

And it IS in your head physically, but it is NOT in your head imaginatively - so to speak. Don't beat yourself up.

It is what the young would call a Bummer.

[Palamino in reply to Parminter]

Cheers for that lol . I've been on tramadol for my knee replacement a d when I stopped it came back so I believe it helped . If it starts gettin really bad again I'm goin to pursue this . The addiction thing is mad it's a low dose and tbh I'd rather be addicted and not want to kill myself because of rls !!! My daughter now seems to be getting it but sporadically at mo and apparently my mum had it . She passed away in my 20 s so I never knew and she was always drugged up to the eyeballs by doctors who probably lay didnt understand it back then .

[Parminter in reply to Palamino]

So sorry to hear that your daughter has it - but you will be fore-armed to help and fight!

Tell her to educate herself, so that when she does need a doctor she will not have to be a helpless victim.

When I stood up for myself and refused to have medicine done AT me, rather than WITH me, then I got somewhere.

And I agree about the addiction - rather be mildly addicted (after all this is a life-long condition) than be dead from jumping off a high building at three in the morning.

And also - dopamine agonists are addictive and extremely damaging, but no-one seems to worry about that.

[Palamino in reply to Parminter]

Thanks for ur support

[Parminter in reply to Palamino]

Palamino, think of this - there are very clever researchers out there who are coming up with new ideas on how to treat us.

One researcher, right now, is looking into a drug that will stop dopamine agonists from causing augmentation.

I think that your daughter may not have to suffer as we have.

By the way, my mother also had RLS. She suffered alone, and after she died I discovered that she had been eating her way through packets of pain-killers every day. How very sad to think of all that uncomplaining misery.

[Palamino in reply to Parminter]

That's great news it would be amazing if all is sufferers had some sort of cure . This condition is torturous people dont understand how it can drive u round the bend . Maybe one day hopefully xx

[Sara_2611]

Ive never taken iron

[Palamino]

Well it seems to help alot if people depends what ur levels are and if ur managing as u are then that's fine

[Lapsedrunner in reply to Palamino]

Always worth getting your ferritin checked and then acting on the results if necessary

[Palamino in reply to Lapsedrunner]

I have had my levels checked they were low that's why I'm on iron . Theyve gone up now and its helping . I was just enquiring about taking it every other day to help absorbsion . Although the first nite after not taking them I had awful rls ..that could have just been a coincidence though . Will c wot happens tonite