Restless Legs Syndrome (RLS) Discussion Board

Hello out there.

I have had RLS symptoms since I was 9 years old. Not until I did a sleep study in my mid-twenties was I diagnosed. Since then, DA's have really helped. However, I am now experiencing augmentation. After reading a great deal of feedback on this discussion board, I went to my PCP to request an order for an iron infusion. She ordered a ferritin level test of which I received the results this week - I was on the low-end of "normal". PCP says that because I am still in the normal range, insurance will not cover the infusion. She instead prescribed oral treatment for which I have temporarily declined. If necessary, I will go the route of taking iron orally, but I really wanted to focus my efforts on getting the infusion covered first.

Insurance website doesn't mention anything about how to meet the requirements for having the procedure covered. I'm wondering if perhaps the barrier is really that my PCP won't order the infusion because she doesn't understand how beneficial it could be. This leads to my question: Will insurance only pay if your ferritin levels indicate anemia or will they simply not pay if the order has not been sent by a doctor?

I'm at my wits end with breakthrough symptoms. Lack of sleep is having a significant effect of worsening my depression and ability to focus. All of this is affecting my quality of life, i.e. performance at work, my relationship with my family, etc.

Thank you in advance for any feedback or information you can share.

This is a unfortunate situation, especially in the USA. Sometimes insurance will pay for IV Iron for RLS patients, but mostly they won't. From their point of view, IV Iron is only covered for the FDA approved indications listed on the product's package insert, which none of the current IV Iron preparations include RLS. Mostly the "package insert" (medical shorthand for the FDA approved information that is included with the product) for IV Iron says it is indicated for "iron deficiency anemia" which of course most RLS patients don't have. There are many medicinces that are used "off label." This means that doctors use them for indications that are not listed in the package inserts. If it is a very common off label use and the drug is not expensive, the insurance company may pay anyway.

Sometimes insurance will pay. For some reason, mine has (so far, knock on wood). I don't know if that is an error, perhaps the doctor's nurse, when filling the forms out for insurance, put the diagnosis as iron deficiency anemia. That would be sort of "automatic" for a hematologist practice who would treat iron deficincy anemia frequently.

Consensus for oral iron I s 2 x 325 mg Ferris Sulfate with Vitamin C on an empty stomach. I do it 4 or 5 times a week and things are just getting worse. My hematologist will not consider IV unless anemic. I’m hoping it gets more accepted and somebody in Florida will provide. Best of Luck

I am considering pursuing the IV treatment with my PCP. I just don't know how to get that started. Would I ask her for the diagnosis and treatment codes she would use and then call my insurance company to find out if they'll pay? This is all so complicated. But it seems worth pursuing and I am desperate for my symptoms to be minimized sooner rather than later. It's currently 9:42 AM and I am experiencing breakthrough symptoms already. At least I was able to sleep for two nights this week.

kindly,
Becca

First you need to get your PCP on board with the plan for IV iron. If PCP doesn't think IV iron is worth pursuing, then you need to educate the PCP or get a new one. Most PCPs don't actually order the IV iron, mostly done by hematologists. So the next step is referral to hematology, then get the hematologist on board with your need for IV Iron. My experience is the best way is to take a copy of the guidlines with the appropriate sections highlighted and give to the PCP and hematologist. Don't email or phone. Give the copy at a face to face visit.

Thanks for the replies, Holland and Stainless! I had a successfully meeting with my PCP and was referred to a clinic for an infusion! I'm feeling so much relief knowing there may be a solution in the near future. I haven't received a call back from the scheduler yet, but want to be prepared when they call.Holland, do you request a certain kind of iron for the infusion or does any of the widely used kinds help? I've read some discussion about the kind of iron in infusions that is most effective for RLS, but am unsure as to how well studied that info is.

beccaapril wrote: ↑

Fri Apr 16, 2021 9:08 pm

Thanks for the replies, Holland and Stainless! I had a successfully meeting with my PCP and was referred to a clinic for an infusion! I'm feeling so much relief knowing there may be a solution in the near future. I haven't received a call back from the scheduler yet, but want to be prepared when they call.Holland, do you request a certain kind of iron for the infusion or does any of the widely used kinds help? I've read some discussion about the kind of iron in infusions that is most effective for RLS, but am unsure as to how well studied that info is.

The recommended type of IV Iron is Injectafer. It requires 2 visits, a week apart with 1/2 of the total at each visit. Only Injectafer has been studied enough to recommend it. Other types of IV Iron (there are about 6 or 8 of them) either haven't been studied enough to recommend them for RLS, or they have been studied and found to be much less effective. Try and make sure you get Injectafer. If you don't get Injectafer you still might have a good response. The problem is, if you don't respond to one of the other types of IV Iron, you still might respond to Injectafer. Yes, I know, more studies need to be done, but the situation today is... get Injectafer if at all possible.

This may be a bit of too much information, but if you just look at the bar charts in this paper you will see how Injectifer (iron carboxymaltose) is better for RLS. Some of the other products do better for treating anemia, which is what hematologists are more familiar with and so they may "prefer" these but they will not be as effective for RLS.

http://kumel.medlib.dsmc.or.kr/bitstrea ... 8-0494.pdf

I cannot thank you all enough. You gave me the courage and information needed for me to approach my PCP. The infusion was ordered, insurance ran a test claim and now I'm scheduled for an Injectafer infusion tomorrow!!! I had so much more peace as I struggled with sleeping this week, knowing an improvement of my symptoms is likely coming. I will now post a question on another board about decreasing Ropinerole.
Seriously, thank you all for helping guide me through this tricky phase. I'm am forever indebted.

Yay!!!

beccaapril - What a wonderful result with your GP. I do hope that the infusion has a very positive outcome and look forward to your updates.