Restless Legs Syndrome (RLS) Discussion Board

I just saw my oncologist / haematologist about my 1.5 year PET Scan which shoed no sign of cancer. Yay! We were going over blood work and he said I showed slightly anaemic last 2 tests. I reminded him of the conversations we had in the past about iron infusion for RLS, blood brain barrier, etc. Before cancer he would not do it because he had no experience with this application and my iron count was fine. They did another blood draw today and he said if it comes out low he will do an infusion. Strange thing to be excited about whatever works.

Can someone point me to the best information for iron infusion for RLS.

You can find a number of articles if you do a search with Google Scholar (not plain google) and search on Earley, RLS and iron infusion.

Here is one of the more recent and probably addresses the things that you need to share with your doctor, such as using a high molecular weight sugar instead of just the iron sucrose that is used to treat anemia.

https://www.sciencedirect.com/science/a ... 5717315599

Thx Rust. I was notified just now I have appt next week and following wk 4 infusion. I offered up Best Practices recommended above but not heard back. Very good and approachable doc will at least research on his own. We've been talking about it 4 years so he is aware. He says I am slightly anaemic but I see my Ferritin level as fine. I'm a little confused but this is my chance. I won't be surprised if it does not work but will be elated if it does.

My Harvard and Yale educated Oncologist / Haematologist gladly accepted the article Rust suggested. I have 2 infusions scheduled a week apart. I'm excited and guarded in my expectations. If it works then I have to find a way to get maintenance. I'm hoping he takes me on like a chronic anaemia patient. I don't quite understand why doctors and infusion centres are so hesitant to take us on. I know they are busy but we are REAL patients too. I had 7 weeks of of chemo, saw people in much worse situations and think a couple of iron infusions would be a walk in the park.

Stainless wrote: Fri Sep 06, 2024 2:04 pm My Harvard and Yale educated Oncologist / Haematologist gladly accepted the article Rust suggested. I have 2 infusions scheduled a week apart. I'm excited and guarded in my expectations. If it works then I have to find a way to get maintenance. I'm hoping he takes me on like a chronic anaemia patient. I don't quite understand why doctors and infusion centres are so hesitant to take us on. I know they are busy but we are REAL patients too. I had 7 weeks of of chemo, saw people in much worse situations and think a couple of iron infusions would be a walk in the park.

That is a good start. Let's just hope it works!

I had the infusion and have been through 4 nights since. The first 2 were brutal with pain, taking extra meds, using every trick and still not falling asleep until about 3 am. The following 2 nights were long restful sleep only getting up once or twice as old men do. The legs were not still but didn't prevent sleep. I have another infusion in 4 days

I had "training" before the infusion by doctor's nurse practitioner. When I brought up RLS she made it clear "they" would not infuse if my iron went over 100. She had none of the compassion her boss has. He listens but is reluctant to go outside his knowledge base. Maybe getting me over 100 is the best they can do and maybe more won't help but I am so sick of this disease I would be glad to be a test subject.

I now believe taking OMEPRAZOLE for acid reflux is the culprit. I was warned about this by a RLS specialist I consulted with 2 years ago. At the time I did not have an Iron issue and didn't take it to heart. Over the 2 years since my iron went from well over 100 (I remember close to 200 years back) to to 50 six months ago to 25. Ferritin has dropped to 17. I was referred to gastroenterologist which is fine but I think this would have happened a long time ago if it was that. I've had a few breakthrough acid reflux episodes recently and it is a horrible thing to wake up to. I'm going to pursue getting a referral to have my hiatal hernia surgically fixed.

I did notice my RLS getting worse and worse in the last 6 months to the point of not feeling I could travel but now maybe know why. I'm hoping for the best and understand 2 nights of good sleep is not success but I'll take every night I can.

Interesting about the iron and the omeprazole. It cannot help, for sure, and it definitely seems like it could hurt.

Whatever the cause for the two good nights, it's a win!

I had a follow up with my oncologist / haematologist nine weeks after two iron infusions. My ferritin jumped from 17 to 165. Total iron went from 25 to 93. My doctor and I expected to see improvement in RLS but did not.

Historically my numbers have always been 100 to 200. We caught the low iron on routine blood work 1.5 years after radiation and chemo. I saw a surgeon about a hiatal hernia detected by PET Scan but he told me 90% of people have this and mine was small. He did not buy OMEPRAZOLE was causing the low iron. Of course he wants to run more tests...

My haematologist encouraged me to seek help at Mayo Clinic in Jacksonville Florida. I explained to him I had tried and was told their sleep clinic was not taking any new patients, not now or next year or ever unless I was referred by doctor at that location. I don't know how to accomplish this. I really don't think they have a magic cure or we would all know about it. So it goes.

Indeed, so it goes.

It has been almost 5 months since Iron Infusions. A month ago I was having some of the worst leg pain in a lifetime of RLS and then all of the sudden the last 3 weeks have been awesome. Sleeping soundly through the night with little pain. RLS wants me to start sleep face down but I wake up a couple times a night in every position. At 68 I could live with this the rest of my life. Still doing hot tub and meds right before sleep.

I just had a 2 yr cancer PET Scan this week and have bloodwork and meeting with oncologist/haematologist in two weeks. Hoping my Iron numbers are good and my brain has been recalibrated.

Stainless, that is great news. I really hope for the best on your PET scan results.

It seems a long time for the two infusions to take effect, slightly over 4 months; but I wonder if it could be?
What else could have caused the improvement? (Other than Mercury is in your 6th house of health)