IV iron therapy
Posted: Thu Jan 02, 2020 2:00 pm
I want to share my husband's experience with IV iron. He received low molecular weight iron infusion on October 8. His ferritin level at that time was 245. He had received a previous iron infusion 16 months earlier, which did nothing, other than bumping up his ferritin. I think they gave him the wrong formulation. He received 1000 mg of LMW iron, given over 1 hour. I got the protocol from Dr Buchfuhrer, which the pharmacist followed. This is the protocol used at Johns Hopkins and Stanford. Within 10 days he was sleeping 7-9 hours/night, usually in 2 settings. He'd sleep 3-4 hours, awake with mild RLS, be up for anywhere from 15 minutes to 2 hours, and return for another 4 hours of sleep. He had a few nights of 8 hours straight. His ferritin level 8 weeks after the infusion was 550.
For those of you who are really struggling, I'd urge you to talk with your physician about this treatment. My husband is on medicare, and they would not pay for it. We had the infusion at an out patient infusion center - the drug was about $330 and the nursing time $80. Injectafer, which has more evidence based studies than LMW iron, was far more expensive - several thousand dollars, so that was not feasible for us. These are the only 2 iron infusions really recommended for RLS. Don't let your doctor talk you into a different formulation.
I've seen some people talking about ferritin levels of 75 and their doctors not wanting to treat then with an iron infusion. A ferritin level is also an acute phase reactant. This means that many things - stress, infection, sleep deprivation, illness, will drive it up, so it is a very poor indicator of actual iron levels, especially iron in the brain. Dr Buchfuhrer says if the ferritin is less than 300 you can receive the IV iron. The 8 week level is the new norm for you. If symptoms return, a ferritin is checked again, and if less than 300, another iron infusion can be given.
The only bad news - my husbands symptoms returned with a venegenace 1 week ago. We are checking a ferritin level today. Don't really know what is going on with him right now, but his RLS is almost constant, and he has had only 10 hours of sleep in the last 5 days.
For those of you who are really struggling, I'd urge you to talk with your physician about this treatment. My husband is on medicare, and they would not pay for it. We had the infusion at an out patient infusion center - the drug was about $330 and the nursing time $80. Injectafer, which has more evidence based studies than LMW iron, was far more expensive - several thousand dollars, so that was not feasible for us. These are the only 2 iron infusions really recommended for RLS. Don't let your doctor talk you into a different formulation.
I've seen some people talking about ferritin levels of 75 and their doctors not wanting to treat then with an iron infusion. A ferritin level is also an acute phase reactant. This means that many things - stress, infection, sleep deprivation, illness, will drive it up, so it is a very poor indicator of actual iron levels, especially iron in the brain. Dr Buchfuhrer says if the ferritin is less than 300 you can receive the IV iron. The 8 week level is the new norm for you. If symptoms return, a ferritin is checked again, and if less than 300, another iron infusion can be given.
The only bad news - my husbands symptoms returned with a venegenace 1 week ago. We are checking a ferritin level today. Don't really know what is going on with him right now, but his RLS is almost constant, and he has had only 10 hours of sleep in the last 5 days.