iv Iron

[Jrskyhook32]

hey everyone. I’m in Thailand and I agave access to a hospital that can do the IV iron treatment. I’m excited to try. But can someone walk me through the inns and outs of this? I’m not sure how high to set my bar of expectations and I’m also unclear about the guidelines. What levels should I have and is there a chance I don’t need this or that it wouldn’t be helpful? Has anyone tried it?

[amrob123]

Hi there, if you search this forum, you'll see that there have been loads of posts about iron infusions previously. Once you have selected a post to read, a list of related posts will also appear on the right-hand side. I'm sure you'll find the answers you're looking for within those posts.

[Jrskyhook32 in reply to amrob123]

Or I can wait until Sue and Jools answer my question. They have helped each and everyone here at some point in time. I feel more comfortable speaking with them than I do a doctor. And their answers are usually tailored to what they know to be my situation. I’ve been a member here for quite sometime. Neither of them have ever gotten annoyed by a question like the one I posted. But thank you for the advice.

[ChrisColumbus]

You can also download and read the document on Iron Therapy that you'll find towards the bottom of this linked page:

rls-uk.org/useful-resources

[SueJohnson]

What is your ferritin? That will give an idea whether it will help.

Ask what iron infusion they use.

In the publication on Treatment on the RLS.org site and in the publication Medicines, it says 1) ferric carboxymaltose (Injectafer) and 2) low-molecular-weight iron dextran(INFed). At this time ferumoxytol (Feraheme), iron sucrose (Venofer) and sodium ferric gluconate (Ferrlecit) lack adequate clinical trials to verify their efficacy in treating RLS.

In the publication on Augmentation on the RLS.org site, it lists the same plus ferumoxytol (Feraheme)

Ferric carboxymaltose (Injectafer) - can cause low phosphorous, however RLS patients may have higher phosphorous levels - is expensive Either 1000 mg or 2 doses of 750 mg 2 weeks apart .

Molecular iron dextran (INFed ) - has higher incidence of minor reactions, least expensive

They take 6 to 8 weeks for maximum effectiveness. You can be tested after 8 weeks to see if it raised your ferritin.

[Jrskyhook32]

do you think it would be an effective way to help ween me off Neupro

[Joolsg in reply to Jrskyhook32]

Not really. Iron therapy won't stop augmentation or withdrawals. It may reduce them slightly, but that's all.Iron infusions help many, but not all. I had an infusion of 1000mg of Injectafer, but it didn't improve my RLS.

I think your best option is to slowly reduce the Neupro OR switch to the equivalent dose of normal release Ropinirole and reduce by 0.25mg every 2 weeks with the help of a low dose opioid and starting gabapentin or pregabalin around 4 weeks before the last dose of Ropinirole.

There have been a few reports of patients starting low dose buprenorphine and slowly reducing dopamine agonists without the awful withdrawal symptoms.

[Jrskyhook32 in reply to Joolsg]

Thank you Jools. I was obviously not thinking this through. I guess my idea was that the iron infusion might make the overall effect of restless legs much easier so that Neupro wouldn’t be as much of a necessity.

[Joolsg in reply to Jrskyhook32]

I know..I remember feeling utterly desperate when I was trying to get off Ropinirole. I clutched at any straws available.The harsh reality, that it wouldn't get better until I went through the brutal withdrawal, was hard to accept.

I had my iron infusion after Ropinirole withdrawal. It didn't help. Experts suspect that years on dopamine agonists cause permanent damage to dopamine receptors, and we need healthy, functioning dopamine receptors to take up iron in the brain.

That's why iron infusions should be first line therapy, before medications.

I hope you can get off Neupro and that you are able to find somewhere that prescribes low dose opioids.

I know Thailand is a lot cheaper than the USA for health care ( everywhere is!).

[DNoda]

I’ve had a couple of infusions and keep my iron level high. It definitely helps. I would really try it if I were you.