Ferritin levels and IV iron

[Olsensl]

I am now seeing a sleep specialist in Portland, OR who had their residency at the Stanford Sleep Center in CA. In our first hour long consult, she was very knowledgeable. However, I had a complete iron panel prior to this appointment which also tests ferritin levels of course. My ferritin level was 70 and when I asked about IV iron infusions, she said that 70 was adequate, that to get it over 100 would not add significantly to abatement of RLS symptoms and that it is not effective for a percentage of people. She stressed that it was very expensive and that insurance would not pay as I was not medically anemic. She acknowledged that at a European conference of sleep specialist she attended, it was a.ways the first line of treatment in Europe—of course. She recommended that I continue taking oral iron.

Frustrated because whether it is Dr. Early or the other Care Center doctors, so many feel that ferritin has to be above 100 for RLS patients. Have any of you experienced this dead end and what course of action did you take?

[sarahpatto]

I had Injectafer infusions in December and was hopeful that it would be a game changer. My ferritin level was 55. At my follow up appointment today with the hematologists she said that iron levels were much better. She recommended 2000 mg of vitamin 12 as that level was very low. Unfortunately, RLS symptoms have not magically disappeared. One question I had for her was this: during the second infusion the IV was not well placed and the iron infusion seemed to be going into my arm rather than in the vein! I still have a dark stain on my arm. She said this wasn't a problem, that probably only a small amount of the iron infusion was causing the discoloration. The IV was uncomfortable from the start and I should have had the nurse redo it. Onward, in the RLS journey.

[ViewsAskew]

It is SO frustrating. I find mine needs to be at least 200 for any significant reduction (about 50%). But, it took me years to get someone to do that and I STILL struggle with the doctors and hematologists.

[Jackolette]

Hello! I am new to this forum and still trying to figure out how to post my RLS story! I’m 72, so not very computer literate. Any help would be greatly appreciated! I was just recently able to convince the neurologist treating me for RLS to try an IV iron infusion. I have received the same pat response for 15 years-“ We don’t usually order that because Medicare doesn’t cover that and it is expensive.” After trying everything else, I am ready to start opioid’s (if I can get my MD to comply). The IV Iron is the only treatment I haven’t tried. I’m interested to know if anyone with traditional Medicare has gotten the iv iron I fusion covered? I am scheduled to start my first Infusion next Monday, Apr. 24. I live in North Florida. The Infusion
center says that Medicare says that RLS is not a covered diagnosis for iv iron. I have refractory RLS. They are going to use Venafer and initially said two infusions, two weeks apart. Then later said I would need 4 infusions. They are each a little over $200. I would like to know if anyone has any experience with Venafer(iron sucrose) and also any info on getting Medicare to cover this. I appreciate any and all suggestions! Thank you!

[Rustsmith]

I am not an expert on iron infusions since I am not a candidate for them (long story).

You will see some discussion of the preferred infusion meds in this document https://www.mayoclinicproceedings.org/a ... 0/fulltext

The one thing that you need to make certain of before they actually start the infusion is whether they will first treat you with Benadryl to prevent that allergic reaction that occurred in the early days of iron infusions. Benadryl can be a potent RLS trigger and the last thing that you need while waiting for the infusion to be completed is for you legs to go crazy. If they insist that you must get an anti-histamine first, be forceful and demand that they use a second generation anti-histamine, such as Zyrtec, Allegra or Claritin and explain that you will not be able to sit still and will be forced to walk around the ward if they use Benadryl.

[Jackolette]

Thank you for your response, Rustsmith! I’ve been trying to navigate the system with RLS for awhile and like most people, rarely feel that I make any headway at all! It was that specific article that I presented to my neurologist that convinced him to refer me to a hematologist for the iv iron infusion. I had no confidence that the hematologist had any knowledge about RLS, and certainly no experience in treating anyone with RLS with IV iron infusions. And he seemed way too hurried to want to learn anything. I feel that after being treated for over 15 years with little success, it is time for me to seek out an expert. I tried to get an appointment at Hopkins, but they said they weren’t taking any patients with that diagnosis. I have some reservations about going to Mayo Clinic- Jacksonville. I think there is an RLS program at Emory in Atlanta; do you know anything about that? I am at my wits end and want to see someone who actually knows more about RLS than I do, so I’m going to have to go to a major city or teaching hospital to find that, I am afraid. If you know of any experts who do virtual visits, please let me know. Thank you!

[Rustsmith]

The Emory Sleep Center is a Foundation Quality Care Clinic. They have several doctors that are both RLS experts as well as researchers. Their specialty is the investigation of the DNA that increases the chances of getting RLS, so if you go, you can expect them to take a blood sample to analyze your DNA to add to their database. There is also another Quality Care Clinic at the Vanderbilt Sleep Center, if that is a bit closer or easier to reach. But any of the Quality Care Clinics can be expected to provide the best of care and one of the requirements is that they must be willing to prescribe opioids.

[Jackolette]

That information is extremely helpful! I am hopeful…..

[Stainless]

Jackolette, You are lucky to even find an infusion center that will even talk to you about IV Iron in Florida. Just try to steer them towards the correct Iron formulation. Rustsmith can help with that. Injectafer is the one I hear discussed.

I was told by John Hopkins they no longer take out of state patients which was a big let down. Why do you have reservations about Mayo Clinic. That was going to be my next attempt. I'm in Central Florida and been through about everything else and know how you feel. Good luck to you.

[Jackolette]

Hello, Stainless! I apologize for my late response. As I’m sure you know, time has a way of getting away from you when you are chronically sleep deprived!
Regarding Mayo- Jacksonville- I read all the reviews online and they pretty much confirmed my thoughts. I used to be an RN who worked at the hospital that Mayo utilized when they first came to Florida. Ultimately, they bought that hospital and the health insurance they provided for purchase by the employees, they didn’t even accept! I thought that was kind of shady. Typically, their model is they don’t like to treat Medicare patients, as the reimbursement isn’t the best. They don’t come right out and say that, they just tell you there are no appointments available for months, if at all. Also, in their model, you don’t just go to Mayo requesting to be seen by any particular specialist. You go there, they put you thru a battery of tests from head to toe, that last anywhere from 3-5 days. Then Mayo decides what specialist you need to see based upon the results of your head to toe testing. They don’t typically accept any outside testing, they want ALL of the tests/studies to be done AT the Mayo Clinic. It’s possible that things have changed there, but I doubt it. If you could speak or communicate with someone who has been to Jacksonville for treatment of RLS, that would be the way to go, IMHO. I have zero knowledge of Mayo’s protocol for the treatment of RLS, so keep that in mind.
As for the IV iron infusions, I had to take the Mayo Clinic algorithm for treatment of RLS, the one referenced by Rustsmith, into my neurologist with passages highlighted, and ask why, after being treated by them for over 10 years, they couldn’t follow the “gold” standard for RLS treatment! They agreed to try and referred me to a hematologist who barely even glanced at the publication. They also finally agreed to prescribe low dose opioids, but flatly refused to consider low dose methadone, saying that I might “go sell it on the street”! Ultimately, I decided it would be more prudent to take the iron infusions to give that route a chance, before I started the opioids. The hematologist ordered Venafer, iron sucrose, which I understand is not usually effective. When I found out that it was Venafer that he ordered, and I was going to have to pay out of pocket, I decided to seek out an RLS expert, at one of the RLS Quality Care Centers. That’s when I discovered Hopkins wouldn’t see me. I’m still in the process of trying to arrange an appointment with Emory Sleep Center. As an aside, I’ve been taking oral iron preparations , with Vitamin C all this time and my ferritin has never gone above 44.
I wish you luck with whatever road you choose to take! As a former RN, (retired), it truly saddens me to know people are suffering from RLS due to lack of knowledge by health care professionals, with apparently no desire to learn more about it!

[sarahpatto]

Regarding the cost of my Injectafer infusions last December... I tried to find out what they would cost beforehand but did not do a very good job with that - I was so certain that increasing my ferratin levels would be the answer that I was thinking "cheap at any price!" HOwever, we have a very high deductible and the treatments ended up costing me $5000 despite trying to negotiate with the insurance company and the hospital. I have not noticed a reduction in my RLS symptoms except for a brief, inexplicable reprieve about two weeks ago where I had 5 nights in a row of sleeping in 3 hour chunks.

[Jackolette]

Thanks for your reply! Wow-$5000.is a lot of money to have spent with no relief! Do you know what your ferritin level was after the iron infusion? I’m so sorry that you didn’t get any relief! I’ve read that some people only got relief with a ferritin level of 200-600, but have no idea how many IV iron infusions it took to get them there! I don’t think there is any way I could afford $5000.; how many infusions if Injectafer did you receive? Medical marijuana has helped me some, but opioids give me the most relief and sleep! Sadly, my MD is hesitant to prescribe them and I am also a bit hesitant to take them every day due to the unpleasant side effects. I wish you well ; never give up hope!

[Stainless]

Jackolette, You sound like the perfect candidate with ferritin below 44. Many can speak more intelligently about this but mine is in the 200 range and everything I've read says the odds of it being the miracle treatment for me is very low but for you maybe. I've read $2000 for two sessions a few weeks apart is standard and it could last a year. Again people with experience can speak to it better, but $5000 seems very high.

Thx for the info on Mayo, unfortunately in Fl I've run out of options. I've had a long discussion haematologist oncologist about IV iron and he is sympathetic but he won't touch it because he has no training.

As a sideline, on another post I talked about being diagnosed with cancer on the base of my tongue and adjoining lymph nodes. It appeared end of Dec but I did not get diagnosed until mid Jan and started treatment in Feb. From Dec for most of that time I only had 25% of my normal RLS. Very strange. As I was finishing Chemo and radiation it came back to normal. At the beginning my oncologist prescribed Oxycodone. I thought it would be a good test of how my RLS responded to opioids. The verdict was not much. it also seemed to screw with my sleep which I think is referred to as alerting.

A while back I had a conference with a RLS doctor who is on the board of RLS.ORG and he said Lyrica (Pregabalin) is about the best you can do if doctors won't prescribe opioids (typical in Fl). He had a very good knowledge of RLS but was very expensive and did not take Medicare. He did spend almost 2 hours talking to me but offered no miracle. I've also been on Clonazepam for over 25 years. I allows me to sleep but does not treat RLS I'm told. I live in fear my neurologist and GP will retire and no one else will prescribe it in Fl. My body is very dependant on it. I quit over 6 months once and it was hell.

Olsensi, I hope you didn't mind me hijacking your post. I thought the information was relevant especially to Jackolette.

[sarahpatto]

Hi Jackolette
2 months after my 2 Injectafer injections my Ferratin level was 596 (up from 55 and 61 on previous tests).

[Jackolette]

Hi, Sarah, I apologize for the long delay in a response. Thank you for the info on your experience with IV iron infusions. I’m not very optimistic after everything that I have read, that the infusions would give me the miracle cure we all dream of! I ended up getting very frustrated with the doctors here and was able to get an appointment with Dr Rye at Emory in Atlanta. My neurologist actually gave me a referral! So, it isn’t until Sept 19. I figured they should know what to try and also if there is any hope of Medicare covering the cost of IV Iron infusions. I don’t want to jinx myself but my RLS has been tolerable for the past few weeks. I’ve never been able to correlate my symptoms to anything, other than stress definitely makes it worse. I feel like my stress level is what it always is so I have no idea why I have been able to get more than a couple hours of sleep. My arms have been bothered with it during the day, but usually the aching pain goes away after awhile. RLS is the most perplexing disease! Anyway, I hope you are coping and able to catch a few hours of sleep!