Hello everyone. I have read several posts about using FerrisIV treatments for RLS. I have severe RLS 24/7 since a young child and it is only getting worse. I tried to explain to my neurologist about the iron treatment but he is sceptical and worried about an excess of iron in the system. Can anyone provide some good links on the use of IV therapy esp. if the individual has good blood readings for iron? He has agreed to read any scientific information I can send to him. Thank you in advance.
Teresa😊🐶
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serengazer
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Print it, Read it, Sections 8.3 and 9.2 come to mind off the top of my head. Highlight it, then give it to your supposed Neurologist and ask him or her if they know anyone qualified to treat RLS.
Step one is always a morning fasted full iron panel. (Don't supplement before the test). Ferritin should be above 100, TSP > 35%.
An infusion saved my life, you have no idea. I supplement regularly now, but the hell I went through for 10 years could have been 100% completely avoided.
If you haven't been treated with a dopamine agonist previously you are in a fortunate position. As I have posted elsewhere, there are a number of treatments, including iron infusion, that are more likely to succeed if you have not been through dopamine agonist induced augmentation. If you email Dr. Buchfuhrer (somno@verizon.net) he will send you the recommended products and dosage for infusion. Your neurologist will only have to do minimal research to discover that Dr. Buchfuhrer is a leading expert in rls treatment. He is also a saint of a man who responds rapidly to queries from sufferers around the world without charge.
You could also look at a very recent study that found a high rate of success with using dipyridamole to treat rls. I posted a link recently which you will find if you put 'dipyridamole' in the search bar. I suspect that dipyridamole is most likely to succeed in patients who have not previously been treated with prescription drugs as, anecdotally, it is not so effective for those who are already using other treatments.
Well of course, that post about dipyridamole was four days ago so naturally I have forgotten that the post was by amrob (apologies to amrob if he/she is reading) and not me. Here is the link to the study: pubmed.ncbi.nlm.nih.gov/341 You are fortunate to have a consultant who is prepared to read papers. Mostly, they seem to like to combine their ignorance with an impatient disregard for the available information.
Thank you for the replies. I have had treatment for 30 years starting with Sinemet years ago , then spent many years on Pramipexole, plus tried the other usual stuff like Gabapentin but had bad side effects. I also use Levidopa again after a 15 yr breakout now with Tramadol and THC/CBD oil and vape. Works really well for me. Not sure if this would affect my response to Iron. I will pass this link on to my Doc and see his response. Thanks again
Quick update... sent link to neurologist today. His nurse replied in hours and said he will send me for more detailed iron testing and go from there. Thanks for the help!!
Unfortunately, there is a suspicion that iron therapy is less likely to be effective for those who have augmented on a dopamine agonist (which it sounds like you have). I can't remember off the top of my head whether actual peer reviewed studies exist to support this but it is definitely borne out by anecdotal evidence on forums such as this.
That is not to say that you should not get your serum ferritin checked. It is important, when taking a dopamine agonist, to ensure iron levels are high as this is a protection against augmentation. I'm not sure what the nurse means by "more detailed iron testing". The most important figure is serum ferritin and, so far as I am aware, this shows up on basic tests performed by a GP. Make sure you get the actual figure. Not just that you are 'normal'.
If you haven't already done so, it would be worth doing some research into 'augmentation' and printing some information about it for your consultant also.
I would have thought that it would be important for you to very gradually wean off all dopamine agonists (levidopa, ropinerole, pramipexole, sinemet, rotigotine - any of them). You will almost certainly find that the currently worsened symptoms reduce appreciably once the drug is wholly eliminated from your system. You will probably need a strong opioid to get you through the later stages of withdrawal from the dopamine agonist when symptoms will temporarily go through the roof in terms of intensity. Then you can focus on optimising your treatment. It is definitely worth bringing up your iron levels before withdrawing from the dopamine agonist however as this can help with the process.
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RLS link to iron deficiency and dopamine. Interesting article.
Success with iron therapy.
How fast is brain iron deficiency restored after IV iron?
Iron levels -- borderline -- IV indicated?
How reliably does NHS retest Blood iron levels after IV Iron?
