Restless Legs Syndrome (RLS) Discussion Board

As the medical experts regarding RLS say Injectafer (iron infusion--not ferric sucrose) is the most effective therapy, I am wondering what experience sufferers have had. I have both RLS and PLMD. Thanks.

I had 2 infusions of Injectafer a little over a year ago. It certainly was a lot more convenient than the other iron infusions I've had. Just 2 short sessions instead of 5 or 6 sessions of several hours each. It helped some, but iron doesn't get rid of my RLS entirely.

I am surprised at the apparent lack of Injectafer recipients. After the IRLSSG consensus paper recommending Injectafer for all but the mildest RLS patients, I would have thought that doctors treating RLS, especially those with an interest in RLS such as neurologists and doctors in the Excellence of Care programs, would be recommending it more frequently. I have arranged to get 2 Injectafer injections, the first this coming Wednesday.

It wasn't difficult, just a little time consuming. I first asked my primary (who is very receptive to any reasonable suggestion for treating RLS) to order the iron panels needed to see if I fit the requirements listed in the paper. When the results showed I did, I made an appointment with her (took weeks since she was on vacation). I gave her a copy of the paper, with a few appropriate sections highlighted, and she said fine. Only problem was she works in a large clinic (PAMF, Palo Alto Medical Foundation) with 1000 doctors. Clinic rules limit prescribing IV Iron treatments to Hematologists only. So she had to refer me to the Hematology department (another 6 weeks wait). I gave another copy of the paper to the hematologist, who at least had heard of IV Iron treatment for RLS, but said "I've never seen a patient with RLS who had a ferritin over 90." I educated him about iron metabolism in RLS (very nicely reviewed in the IRLSSG paper). He looked at it, said fine, and submitted a request to my insurance company. I told the hematologist that payment for the Injectafer (likely about $800 per dose, two doses needed) would probably be denied by the insurance company (FDA official labelling restricts Injectafer to use in iron deficiency anemia only), but that I would pay for it anyway. I got a call from the IV nurse two days ago scheduling me for my first injection. Still not clear if insurance will pay for the medicine or not, but I am definitely getting it.

For those not familiar with IV Iron Infusions for RLS, the overall statistics are that about 50% of recipients will have no noticeable response, 25% will have complete remission (meaning NO RLS symptoms and requiring NO RLS medicines) for anywhere from a couple of months to a couple of years, and 25% percent will have a significant improvement (meaning still requiring some medicine, but less than previously). While obviously I would love the improvement rate to be 100%, the risk from the medicine is very low, and my only real risk is the time needed to arrange the injections and the possible $1500 or so I may have to pay for the Injectafer.

At the RLS patient conference, Dr Earley said that the biggest current problem with iron IV's is the hematologists. Many simply refuse to give iron IV's in the absence of anemia. Apparently the problem is so severe that Dr Earley has become qualified to give the IV's at their clinic.

So, it sounds like you were lucky to get a hematologist who would listen and learn.

Stjohn. Are you talking about people who have an iron deficiency when you say recommending Injectafer for all but the mildest RLS patients...and 25% will have complete remission …

I'm a sufferer "with RLS who had a ferritin over 90."

Stainless wrote:Stjohn. Are you talking about people who have an iron deficiency when you say recommending Injectafer for all but the mildest RLS patients...and 25% will have complete remission …

I'm a sufferer "with RLS who had a ferritin over 90."

The problem with your question, and apparently with the hematologists, is that they think iron deficiency only affects the red blood cells (anemia if ferritin is much less than 20). The iron requirements of the body vary by organ involved. RLS patients have low brain iron, but (usually) plenty of blood iron. The main problem causing RLS (as currently thought) is that the blood iron doesn't get into the brain properly in people with RLS. So the term "iron deficiency" is an imprecise term and needs to be qualified with something else, such as "brain iron deficiency" (which is most, perhaps all, people with RLS) or "iron deficiency anemia" which means low blood iron.

What your ferritin of 90 tells us is that you have plenty of iron in your blood. The fact that you have RLS tells us that you have brain iron deficiency.

Ask again if this does not answer your question.

Love that answer, Holland.
I am moving this topic to Prescription Medications forum but I will leave a shadow topic behind in Physical Treatments.

Well, I am now 24 hours post first Injectafer infusion (second due a week from today). So far, so good. Response to iron infusions is variable, some people having nearly immediate response, but most are delayed, some as long as 6 weeks before maximum effect (and of course about 50% have no response).

The infusion itself was unremarkable, as expected. No pain, no headache, no nausea. Took 2 hours total (they have an unnecessarily long process, possibly because lots of the people at the infusion center are getting cancer chemo drugs). Actual infusion of Injectafer was via piggyback, diluted in 250cc saline given over 30min. Then they have a mandatory 30 minute observation spell afterwards.

I usually have mild urge to move symptoms starting about 5pm and lasting until about 7:30 pm- I take my pramipexole at 6:30 pm. Today (YAY) no urge to move symptoms... While likely coincidence or placebo effect, I am thinking positive and figuring I am an early responder. LOL, hope springs eternal. I will continue my usual meds for a while, though if urge to move has really disappeared, I will probably try cutting out my pramipexole ASAP.

Holland, hope this trend continues and that you are able to back down on some of your meds. What a wonderful thought. I wish I was a candidate, but sadly I am not since my ferritin level is over 600 and that did not ease my symptoms at all.

I had my level checked for the first time ever a few months ago. I expected it to be low considering that i augmented on Ropinirole. But it was over 200. Maybe that explains why i got by with taking a fairly high dose for 15 years tho.

Hope that trend continues!

Rats... Well I am now 4 1/2 days post first injection. Had one evening of reduced symptoms, but otherwise no change. Not surprising considering most people require a week to several weeks to have a response. My second infusion will be Thursday.

Fingers crossed for you, Holland. Rachel

Holland, I hope you have a positive result.

Last night, 7 days post initial infusion, it seemed like I was having less urge to move. I decided to omit my 6:30 dose of pramipexole (0.0625mg). Didn't work. By 9pm (my usual bed time) I was dancing in front of the the TV. I took my pramipexole, and by 10 I was able to fall asleep, though still with mild urge to move...

Today I got my 2nd Injectafer infusion (takes 2 doses per the IRLSSG recommendations). We will see.

I may try to cut my pramipexole dose in half for a while, though it is difficult to cut those tiny tablets into quarters. One of the many problems those with RLS face. Suffering helps prepare us for our work in heaven (2Cor 4:17).