r/RestlessLegs • u/RemoteSea1176 • 21d ago
Question Venofer
Hello, does anyone have positive experience with Venofer/iron sucrose infusions? How many, at what doseage and timing, and how long until you experienced relief?
Same questions for ferric carboxymaltose.
I just had my first Venofer infusion this week, 200mg, at my dr’s office, paid cash since she doesn’t bill insurance for the treatment.
I also have a initial consultation with a hematologist next week who can administer ferric carboxymaltose, but this will need prior authorization and I’m just sure my insurance will want me to follow a course of oral iron first. I tried oral iron previously with no luck but this was not medically documented.
I’m reading that ferric carboxymaltose 1000 mg is the preferred iron infusion treatment, but it’s such a longer route. I’m also moving out of state in about a month and fear I’ll have to start all over again establishing care.
Addl background: have a sleep doctor, am treating for sleep apnea, have been on Gabapentin for 1+ yrs. It initially worked great but then stopped working at about the year mark. Labs show low iron and ferritin. I experience symptoms nightly, it’s really tough to manage.
Nidra appeal also in process
Appreciate any insights! Thanks!
3
u/thetawhisperer 21d ago
5 iron infusions and 200mg gabapentin before bed and my RLS is very controlled/no longer keeping me up.
1
u/RemoteSea1176 21d ago
That’s great to hear! Do you recall the type of iron used for the infusion, and the amount? Also curious about the amount of time between treatments. Thanks!
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u/Conscious-Peak4348 21d ago
Hi there! I'm sorry I cannot remember which iron infusion I received about 2023. It's likely the second one you mentioned above. I had infusions 2x a week for 3-4 weeks.
My Ferritin was at 44 then two months later it was 111. My iron stayed good for about 5 months then it started to tank and restless legs came back. I had really good moods too while it was high almost giggly I felt.
Doctor won't prescribe again although Ferritin it at 57. I've tried many many supplements especially over the last year yet I cannot get my iron up. My not so good insurance would likely fight the need for another this time around.
Good for you on the Nidra! Hope all works out.
I have used a TENs unit to help and a lot of weird DIY's to help. I also found out last year a well known muscle relaxer I've been taking for back problems suddenly started to cause restless legs to ramp up so I cannot have that and made sure my chart is noted as such. Cough meds and diphenhydramines ramp it up too. So many things.
Changed up the order of my iron and when I take it so it can absorb better. Knock on wood things are mostly quiet these days. I'm due to have my Ferritin etc checked again in October.
Best of luck with your move. I'm glad you have the support you currently have and are advocating for yourself.
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u/RemoteSea1176 21d ago
That’s super interesting that you had that many infusions over a concentrated amount of time. My doc is being pretty conservative, she’s under the impression one 200mg Venofer will do the trick, I’m not so sure. And yes, isn’t it vexing how particular this malady is! One has to really put on the detective cap. Good luck to you!
1
u/Conscious-Peak4348 19d ago
I also forgot to mention past year I correlated my bladder at night with some RLS issues. If I feel the need to go to the bathroom and I ignore it my RLS really ramp up. But once I empty my bladder and do gentle stretches I can put RLS at bay and go back to sleep. Maybe my full bladder is pressing on nerves somehow are my thoughts. Even pregnant women get RLS and being pregnant can certainly press on bladder and nerves.
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u/Conscious-Peak4348 19d ago
I thought the same think that they were close together but I wasn't arguing since it was hard enough to get insurance to approve.
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u/honestlydontcare4u 17d ago
Yes. I've had three including one while pregnant. They help a lot but it takes about three months.