Restless Legs Syndrome (RLS) Discussion Board

Hi All. I just wanted to post an update. I finally had an iron infusion and it seems to have cured my severe RLS. I showed improvements within 6 hours and was able to sleep through the night by two weeks. It was prescribed by a hemotologist (Dextran). Hopefully, it will last. I take oral iron supplements now and also changed my diet (I was a vegan for 20 years... I now eat meat). I had to faint, beg and cry to get a doctor to finally prescribe the iron infusion. Just wanted to let you all know what seems to have worked.

Yay!!, Glad it helped. Remember the data show that for most people who respond to IV Iron, that benfits keep increasing for about 8 weeks, and that the initial infusion usually helps for a few months. Subsequent infusions last longer, 1-2 years for most.

YAY!

I want one, too ... I will also try the crying, fainting and begging strategy. Otherwise doctors just don't seem to get it.

Iron infusion is a somewhat simple and straightforward treatment but it seems harder to access than high potent opioids.

Why is the potentially most effective treatment for RLS so difficult to access?

Why are our doctors so informed? Why do we have to fight so hard to get basic treatment for our symptoms?

I forwarded the doctor literature, to support my request. I think there's a white paper on the benefits of IV Infusion floating around on this site. I sent it to the doc. I think it helped a lot.

About 4 years ago, I went to yet another neurologist who billed themselves as a "specialist" in RLS. She was maybe in her mid 40s, smart, had a LONG first appt with me, seemed to know the research...and when I brought up iron infusions, you would have thought I was saying I wanted to commit suicide. She immediately started in on the dangers - did I know how I could have organ failure and so on. I was stunned.

I had seen at least 10-15 neurologists in Chicago by that time. And it was my last. I came home and was SO sad, mad, and lost. I could not find ANYONE to work with me in one of the larger cities in the US.

My husband, shortly thereafter, said we should move to be by a doctor who WOULD help. So, 2000 miles later, we live in Southern California now. My husband has had a harder time adjusting than I would have hoped, but for me and the RLS, it was the best decision we have made since I augmented.

Why is the potentially most effective treatment for RLS so difficult to access?

Why are our doctors so informed? Why do we have to fight so hard to get basic treatment for our symptoms?

I traveled from northern Canada to California to get an iron infusion last fall. I talked to my GP here afterward. I went over the research with her, and it was hard for me because I'm overly accommodating and hate conflict, so I can't be forceful, but I tried to be assertive. She was intrigued, mainly because I had lowered my dose of opioids. But then she went to a conference, and talked to a supposed expert (the best we have in Canada???? I hate to think so) who said she would never give iron infusions to someone whose ferritin was over 60. And that was it. The doors shut. She was apologetic but - I think she has to protect herself, and this "expert" disagreeing means my doc could never defend herself if called to question about prescribing me an infusion.

She still wants to help, so she suggested I ask a naturopath, who might be willing to administer the infusion prescribed by Dr B in the States.

But why? The science is there. Other people are doing it. They are willing to talk to newbies. So why is it so hard to get what we need?

Studies have shown that doctors are most influenced by their experience, INITIAL training and one-on-one discussions with other doctors. Newer scientific evidence is lower down on the list. Most doctors have had no experience with IV Iron for RLS, their initial training was very likely "iron is dangerous unless tests show low BLOOD iron (low ferritin) and IV Iron is especially dangerous (old IV Iron preparations occasionally caused fatal anaphylaxis)."

Bottom line, it's hard to get IV Iron for RLS. It is changing, but slowly.

Interesting! Part of it is not surprising, though. A GP is always busy, and sees a bazillion different patients, I don't know how they could ever keep up on all the multitude of maladies out there. Even a specialist. They see so many patients.

But I gave her the paper and made it easy for her to dig a little farther. Instead, she took the word of that "expert" over the consensus in the paper. I was surprised by that. It totally fits the results of the study you mention. Wow. Why couldn't she have gone to an international conference and run into Dr B or someone.....

In 20 years, people like me will routinely be getting infusions in the US and Canada. And I'll probably be dead!

Don't some Naturopathic doctors do IV infusions, inckuding iron? If do,that might be thd easiest approach.

I was able to boost my ferritin from less than 20 to 100 by using oral iron supplements. It was a long process but it worked. I've been taking 0.125 mg of pramipexole off snd on for 10 years with no augmentation.Now I take it occasionally as needed

I'd be willing to travel to try infusion. My medical health service is useless. My neurologist has no problem prescribing benzodiazepines and pregabalin but the hematologist will not consider it unless I'm anaemic. How can that make sense. I would have no idea how to doctor shop. I'm in Florida but could make a vacation out of it. Does anyone have experience setting up such a vacation? Is there anywhere on the east coast? What about Costa Rico? Thx Rick

Stainless wrote:I'd be willing to travel to try infusion. My medical health service is useless. My neurologist has no problem prescribing benzodiazepines and pregabalin but the hematologist will not consider it unless I'm anaemic. How can that make sense. I would have no idea how to doctor shop. I'm in Florida but could make a vacation out of it. Does anyone have experience setting up such a vacation? Is there anywhere on the east coast? What about Costa Rico? Thx Rick

Rick, Before making a possibly expensive and time consuming trip for IV Iron infusions you should get the blood work to be sure you fit the guidelines. The tests you need are ferritin, iron panel, and transferrin. If your numbers fit the guidelines and you are willing to travel, likely you would have the fewest problems going to one of the RLS Quality Care centers. https://www.rls.org/treatment/quality-care-centers
Likely the closest to you is at Emory Sleep Center in Atlanta.

Thanks Holland. I'm scheduled to have an iron tested next month before my doctor appointment. I'll take a closer look at the guidelines since my doctor got a resounding "not unless anaemic" response from the haematologist. My basic iron numbers have been all over the place probably because I have not always be faithful about taking supplements. The last 6 months I have but my numbers have never been low. My doctor called it an iron panel but the script says Iron profile includes iron and TIBC. Does that sound like what I need.

Stainless wrote:... My doctor called it an iron panel but the script says Iron profile includes iron and TIBC. Does that sound like what I need.

No. You need the "iron panel" but additionally you also need ferritin and transferrin.

My incredibly accommodating GP has persuaded a haematologist to give me an IV infusion of iron in spite of my serum ferritin being around 40, based on the published recommendations of the IRLSSG which I drew to his attention. I am hoping to get it next month. It looks like my health insurance will cover the cost although I am prepared to pay for it myself (around €1,000) if not. I suspect I will be the first RLS patient in Ireland to have this treatment for the condition. At the moment I am trying to manage my expectations because it is apparent from forum posts that the outcome after IV iron is fully variable. Also, I am sure I read somewhere that iron is less effective generally for those who experienced dopamine agonist augmentation - which I did. Nonetheless, I am quite excited about the prospect of a possible improvement in symptoms.