Hiya fellow night twitchers! I finally got 2 iron infusions and it has made my RLS manageable with medication- yahoo!! Before, my ferritin levels were about 13- whereas ya'll know that they should be at least 75 for people with our syndrome. When my iron was so low, nothing worked- no matter how much medication I took. I wanted to die. Only you guys know what I am talking about.
Now that my ferritin is 78, I can get significant relief with a mix of Lyrica (Pregabalin) and Requip (Ropinerole)- which I take about 4 pm and again at 8 pm..... and sometimes a 3rd time at 4 am. I am happy with the iron infusion results but there is room for improvement- maybe, just maybe if my levels got to 100, I may not need to wake up suffering during the night.
My hematologist said she would try to do a peer to peer consult with my insurance company to get a 3rd iron infusion for me if she could find a study that showed some people need to be over 100 to have best results.... the range cited in a lot of studies I've read is a minimum of 75-100.... but can anyone find articles demonstrating that some people only get true relief once ferritin is over 100?
Would love to hear your experiences with iron levels too. Good night from NYC
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SkyCop
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For a start, the authoritative Mayo Clinic Algorithm states that iron infusions should be used where serum ferritin is under 100 μg/L:
"Intravenous administration of iron is recommended as first-line iron therapy if serum ferritin concentration is between 76μg/L and 100 μg/L because absorption of oral iron at these higher ferritin levels is likely to be minimal..... According to a consensus of RLS experts, (footnote 18) the base requirement for any use of intravenous iron therapy in RLS is that the serum ferritin concentration should be less than 100 μg/L (and not affected by inflammation) and transferrin saturation less than 45%."
We quite often write that serum ferritin in RLS sufferers needs to be raised to over 100, preferably towards 200, which I believe. However, I can't immediately put my hands on a study that confirms this. Hopefully another member will have this...
Do you have daytime symptoms? If not there is no point taking the lyrica at 4 pm. Add it to what you take at 8 pm. Don't just stop the 4 pm one without adding it to the 8 pm one or you will have withdrawal symptoms. If you find you don't need that much if you add it to the 8 pm very slowly reduce it and you won't have withdrawal symptoms. I notice you said you were augmenting on requip. I assume you are trying to come off it with your doctor's help. If you need some advice on how to do this, post here and we can give you some.
Congratulations SkyCop. I went through this experience. The most consistent find in RLS is iron insufficiency. I am not so sure all those other medications are necessary. I used to take them too. As I am sure you are well aware, they come with side effects.
I am here to tell you, not all those drugs are necessary. I don't take them anymore. Be-careful with Ropinerole, it's advisable to stop taking it slowly. Reducing the medication every week or so. Dopamine Agonist Withdrawal syndrome is real, I suffered every symptom.
Getting of pregabalin took a couple months. I had a tough time regulating my body temperature.
Why do I tell you this? What do I take now?
I went through this hell. The first thing doctors and neurologist wanted to do was give me drugs. First Ropinerole and all the DA drugs, then after the hell of augmentation, gabapentin and pregabaln. All with the usually brain fog side effects.
What do I take now?
Iron Bisyglycinate with some vitamin C, on an empty stomach at night about 90 minutes before bed.
Vitamin D with a fatty meal, breakfast or lunch. Vitamin D blocks Hepcidin and helps iron absorption.
Now here is the interesting stuff. new research has been done on the effects of low iron in the brain. The problem is a lack of adenosine.
"These findings confirm the results of a previous open-trial study in which dipyridamole improved RLS symptoms over an 8-week treatment period.7 Our study has several limitations, which are the small sample size and the short treatment period of 2 weeks. Nevertheless, its first objective was to provide proof-of-concept results showing a significant therapeutic response to a drug with a new mechanism of action. "
I started taking Dipridamole well over a year ago. I was taking pregabalin at the time, and immediately started decreasing my medication. It took three months to get off pregablin totally.
I now only take Dipridamole, the only side effect was a slight headache in the beginning. I never get them anymore. I feel like a person without RLS. Seriously! I also used to have pretty severe tics and twitches, in my legs, stomach, shoulders, yeah pretty much everywhere.
When I started taking Dipridamole my twitches and tics stopped completely. Now however a few sneak through at bed time. The ones that do sneak through, are not strong and I seem to be able to control them. They have not gotten worse over time.
I hope this helps you, sorry it was so long. Congrats on the infusion.
Glad you are doing better but I'm afraid your journey has just begun. This would be super great news if you were no longer taking the Requip/ROP. Almost all of us on here have had a tough journey getting off DA's and onto a new solution. I had to write to you, as my journey began with an infusion while I was still on ROP, too. Best of luck, and do keep reading.
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