Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.
Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
I have had RLS for at least 10 years, most likely since childhood. I have symptoms in the early evening around 8:00pm and usually at 2:00 am in morning. I have a prescription for repinorole, but try not to take it to avoid augmentation. I have also tried oral iron supplements, but they do not seem to work and only cause an array of side effects.
Over the past 8 years I have had several Ferritin tests. In 2013 my level was 9 and I convinced the doctor to prescribe an iron infusion. I had 4 (200mg/dextran) in 2013. My symptoms decreased substantially and I could sleep through the night without waking up at all. I felt great!
The most recent test in August was 22. I asked my new doctor to prescribe an iron infusion. She refused and stated that iron infusions are not a benign treatment and does not recommend it because my iron levels are normal. However all the research I have done indicates that there are no major side effects or impacts.
If you have experienced this reaction or been denied treatment, I would greatly appreciate your feedback. I want to pursue an iron infusion and try to maintain a higher ferritin level with supplements.
That is so sad. There is a LOT of research literature out there - I wonder if you took the studies to her if she'd relent? Am falling asleep right now, so can't do a search for you. Many are by Johns Hopkins doctors. There website might even have some of them.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
When your doctor says that your iron levels are normal, is she speaking generally, or is she being specific with regard to your ferritin levels. What is your present ferritin level. Everyday iron can read ok and still have a low ferritin. Also, she needs to know that for a sufferer of RLS 'normal' is as near to 100 as you can get. http://www.hopkinsmedicine.org/neurolog ... tment.html This link will take you to a John Hopkins paper which includes Iron Supplementation.
