friends:
i was able to have an IV iron treatment yesterday. i have high hopes this will help my ever increasingly bad RLS. can you please write back with your experiences with receiving IV iron? from what i hear, it only helps 50% of people, it can take 2-12 weeks to kick in, it may only last 6 weeks or so. these findings happened my hopes, but i'd like to hear from you about your own experiences.
thank you!
I had an Injectafer infusion at St. George's in London and my serum ferritin shot up to 785. I hoped it would help but sadly, didn't make any difference. I have bloods taken every 3 months for my MS drug & they test serum ferritin. It dropped over the next 2 years and is now around 350 but still have severe RLS every day/night for at least 3 hours despite Oxycontin.I hope it works for you. Fingers crossed.
jpoolsg - thanks for letting me know. i am so sorry you had such a disappointing outcome.
It's definitely worth trying. Both Dr. Buchfuhrer and Dr. Winkelman report that 60%will have dramatic improvement, 20% good improvement but 20% won't have any improvement. I'm in the 20%.I know my RLS is caused by MS lesions in the spinal cord. Others with spinal damage or RLS brought on by spinal/bone surgery are unlikely to see improvements with iron, diet or supplements. Meds are the only thing that will help.
The odds are in your favour.
Till I used extended release oxycontin with higher doses, I got no relief. 60 mg a day. You get used to it. You don't get "high" after you take it a while. The problem was getting the Dr to give me more. The opioid treament today reminds me of the refer madness mentality in the past. The ones that need it are being hurt by protecting everyone else. PH
I'm going to try 30 -40mg of Oxycontin or Buprenorphine but need to have long chat with GP to discuss fully & show them all the usual evidence.
I hope that works out. I'm sure different levels work differently for different folks.
Agreed. It's just persuading the doctors. Fingers crossed my A4 box file of research papers will help persuade them.
I've not had an infusion, but I have read the same as Jools reports.
Success rate 60% meaning no meds needed!
20% partial success, symptoms relieved.
20% failure.
Good odds.
I've also read that it can take 12 weeks. I believe a recent study by Dr Earley said it can last 24 weeks.
thank you very much for the additional information. i will try not to get my hopes up. i do appreciate you always being there for us in this forum, Manerva!
I have had 3 or 4 infusions (Ferrinject which i believe is the same as Injectafer in other countries). The first infusion was before i was diagnosed with periodic limb movement disorder. The others since. I experienced an improvement (ie reduction in symptoms) by around 10%, maybe 20% being generous. Good luck with yours. My hematologist advised that it takes about 6 weeks to experience the full benefits of an infusion.
I had an Injectafer infusion 1.5 years ago. It didn't improve my RLS. Prior to the infusion, I had been able to raise my ferritin to just over 100 by taking iron orally (iron bisglycinate) every other day before bed. A few months after the infusion my ferritin had risen to 353. And has dropped since, although I haven't had it assessed for over a year.
I have refractory RLS. Quickly started to augment on ropinirole and was switched to tramadol, gabapentin, pregabalin and finally oxycontin which was successful for longer than a few weeks. Because of side effects (depression-like symptoms) I got switched to buprenorphine last autumn. No more RLS if I take my doses.
Take your chance and let us know. As said by others, it may take a while.
ug! i am so sorry to hear it. i hope there are some breakthrough treatments soon!
Searching for articles on Iron IV Therapy 
Ever wonder why those IV iron infusions didn't do a thing for your RLS? Note last paragraph of abstract..IV infusions BLOCK iron absorption!
How reliably does NHS retest Blood iron levels after IV Iron?
Iron levels -- borderline -- IV indicated?
What are your experiences with the Neupro patch?
