Restless Legs Syndrome (RLS) Discussion Board

I had my first IV iron infusion yesterday. I decided to post about it in case anyone out there was as scared as I was. I had read online that the infusion would last 3-4 hours. I would have an IV inserted, and then 3-4 later I would be finished.

So I was very nervous. Six months earlier I had a colonoscopy, and it was a nightmare--not because of the colonoscopy itself, but because they had told me not to take any meds because they might interfere with the meds I would be given. I wasn't too worried, as I had had a knee replacement a year ago, and they must have put opioids in my IV, as I was very comfortable. But, it turned out, whatever they gave me for the colonoscopy did nothing to help my RLS--maybe hurt it. All I know is that when I woke up my legs were just out of control--worse I think then they've ever been. And my blood pressure was up to 240, and it's usually around 120. So they wouldn't let me leave until my blood pressure was down, but neither would they give me anything for the RLS. Pure torture. I was afraid of this kind of thing happening again.

So I packed all of my meds, and arrived early so I could talk with the nurse. She said the only thing in the IV was the iron, some glucose, and vitamin B-12. So I could take some RLS meds. I took some kratom (dissolved in orange juice as it works the fastest), a small ropinirole (0.25) and two little edible cannabis candies. The best thing was the whole thing only took an hour and a half, and I was sitting in a big chair rather than lying on a table. I was completely comfortable, and watched a movie I had downloaded to my iPad. I was a little dizzy at the end--not sure if it was the meds or the iron. But luckily I had arranged for my daughter to drive me home.

So the experience was fine. I could even have worn long sleeves, as they used the vein in my wrist. I don't know if it will help yet, but at least I won't worry about the next two times I'm scheduled to go.

awesome! Mine was very fast, only about an hour. It took a month to kick in. I hope it happens for you!

P.S. I've moved this Topic to Prescription Medications. A shadow Topic has been left behind so it can still be found in Non-prescription, but comments will automatically be stored in the new Topic.

Thanks. I wasn't sure where to post it.

I hope it helps!

Thank you for this. My first IV iron infusion was deferred due to covid19 restrictions and I don't know when it will be rearranged. I was, however, slightly anxious about the process and it's nice to get the reassurance about it.
On a different note, I was thinking of you, Jul2873, as it was thanks to posts by you that I first tried kratom and it has been a life-saver for me. In recent months, for a variety of reasons, I have been taking it through the day even though my symptoms are mainly at night. I have noticed that if I take two or three dosess (a dose for me is a flat tsp currently), I consistently need much less kratom through the night - sometimes none. I cannot account for this as the effects seem to wear off after 4 hours if I only take it through the night whereas they seem to be cumulative if I take it through the day. I wondered if anyone else has experienced this?

Hi Legsbestill,

Thanks for the nice note. So glad kratom has been helping you. It is still my major med after 8 years, although now I have added a little marijuana (a couple of the edible candies every 24 hours) and a very small ropinarole). They have allowed me to cut down on the kratom. I do use kratom during the day, as I need it to lay down in the afternoon. And I do notice that if I take a fair amount during the day I do need less at night. Now, after 3 iron infusions, I usually get up only once (or occasionally twice) in the night. So I'm doing very well!

I was wondering if this iv iron helped with the restless legs at all?
advise,
Daryl

I have not used IV iron but several of our members have done so with success for their rls symptoms. There is a criteria to qualify for IV iron involving blood/ferritin levels. My understanding is that you need to be referred by your GP to a haematologist. It does not work for everyone but several of our members have had great success.
Perhaps try a search here for 'IV iron haematologist'

daryl1139 wrote: ↑

Mon Mar 29, 2021 9:21 pm

I was wondering if this iv iron helped with the restless legs at all?
advise,
Daryl

It helps some of us, not others. It helps me - am due for another infusion right now, actually. It reduces my need to take opioids by about 45-50 percent. That really helps.