No results from ferritin infusion

[grandpianoman]

My ferritin level was 41; after 4 months of every-other-day oral iron bisglycinate, it went to only 64. Then came an iron infusion. That was two months and one week ago. My ferritin is now at 394, but there has been NO improvement in symptoms. I read somewhere where it can take up to 3 months to "work," so I am hanging onto hope that it yet will enable a drop in meds. Has anyone else had a last-minute jump i IV effectiveness? If it doesn't work, I am back to meds that only partially work.

[LotteM]

Hi grandpianoman, I am in the same boat as you are. Augmented on a DA, couldn't tolerate gabapentin and pregabalin, and oxycodon is effective fir the RLS, but makes me constantly fatigued and concentration is short-lived. I had an iron infusion about a year ago, with no effect on my RLS. I know of quite a few others in the forum who didn't get any benefits from the iron. The studies have mostly bern done with 'naive' patients, and we wonder whether iron is far leas effective than claimed based on the studies in people with refractory RLS. Time will tell and not much hope to give for now. Sadly.

[involuntarydancer]

I too have failed to respond to iv iron. Like Lotte, I previously augmented on a dopamine agonist and I too suspect that the incidence of positive response to iv iron may be lower in those who have been through augmentation.

[rls-insomniac]

I had an iron infusion last week although my ferritin levels were 114. I also suffer with refractory RLS. I'm not expecting much, if any improvement. Indeed when I spoke to the consultant on duty that day, he did acknowledge that it's a bit of a hit or miss treatment. I do wonder if it's more beneficial to those who have milder RLS symptoms. I'm not convinced it's necessarily beneficial for those of us who are already taking opioids for RLS.

[Graham3196]

I also had high hopes for an iron infusion but I was disappointed. Nevertheless there seems to be some people who benefit so it should be the first option for anyone who is newly diagnosed. Its been claimed that 30% get a real "cure" that lasts for at least a year.

It would be interesting to ask Johns Hopkins people what the current situation is. They might have enough in their records to tell us if it helps certain classes of patients. I remember that Doctor Buchfuhrer mentioned that they were treating bad cases and had success but that was years ago so there should be a lot more experience now.

[Graham3196]

I have sent a private message.

[DicCarlson]

What a conundrum, and so disappointing.

From Johns Hopkins... "All studies to date support the concept of diminished brain iron in patients with RLS even when blood tests indicate that their iron stores are normal. Cerebrospinal fluid obtained by lumbar puncture has shown that the iron storage protein ferritin is low in RLS patients, despite these patients having normal serum levels of iron and ferritin."

"Gaps in our knowledge. Despite the substantial body of research on peripheral iron regulation, we still know very little about how iron is regulated by the blood-brain barrier or by the different cells within the brain. Also there is a relative lack of research on the effects of having iron insufficiency and on exactly how a brain region can be low in iron yet other organs in the body have normal levels?"

More here... hopkinsmedicine.org/neurolo...

[WendyBea]

HI Grandpianoman, I've had four infusions over the past few years, and in only one instance did I think I felt some improvement. However, I have recently learned that it can take 6-8 weeks for the infusion to take effect, and maybe those times when I thought it didn't help, I was expecting results too soon. Maybe there actually was improvement two months later, and I just thought I was going through a "good" period. Who knows? I was expecting results much sooner than that.

That same article said if you were going to test to see if ferretin levels rose, you should wait about six weeks.

Currently, my level is 50, and my neurologist/sleep specialist has suggested trying infusions again. I suppose there's nothing to lose by doing that, now that I'm a bit better informed about what to expect. I'm disappointed to learn that even with your high level of 394, your symptoms haven't improved.

Best of luck.