iron infusion

[ellenalbert]

This discussion board is complex to navigate. Forgive me if I goof it up. And help me!
I joined October 4 and am finally trying to make this thing happen.
I'm 71 with RLS beginning in my first pregnancy - age 25 and it just kept going.
I was fortunate to have a doctor who knew what it was and Valium helped for a number of years - some living in the 3rd world.
Little help was available to me overseas and I landed up in a mess for a number of years as my body "went boom" from sleep deprivation.
Once back here I saw sleep specialist, psychiatrist good with meds, and then PCP's doing a number of different concoctions of meds.
And I made a come back and thanks to rls.org, I had some direction on where to go as I saw my PCP's.
I augmented on Mirapex some years back.
I've been on 1200 mg of Gabapentin, 0.125 mg of Mirapex and 0.75 mg of Clonazepam - all in the evening - and have reasonably good control of the leg symptoms.
Sleep fragmentation is the toughest rub.
I've concluded decreasing my life margins more and more to limit how much is on my mind at bedtime is how I must live - and try to not overdue physical activity during the day which I often fail in doing; very, very frustrating to give up more and more.
I decided to go for an iron infusion after listening to Dr. Aurbach's webinar; hopeful for improvement, but not overly so.
My ferritin has been around 30; very bad, I know.
I've eaten a whole food plant based diet since 2013 so won't do the hemi-iron thing and iron supplements were awful to my guts.
We moved a year ago and I have a new PCP who is not real knowledgable - I was the first patient to have an iron infusion for RLS at the hospital here.
But I give credit to my PCP for giving the go ahead for the infusion.
So, I'm interested in hearing from those who have had the infusion regarding their experience and to receive counsel on where to go from here.
My doc and I plan to do a repeat iron panel about December 1st which would be 3 months after the infusion.

[Polar Bear]

You have had a long life of RLS, rather like myself. I did my best to educate my GP and this is the position you are in yourself. As your PCP is not RLS experienced but is willing, he may respond well to any information you can provide as required. The Mayo Algorithm is excellent.
I have never had an infusion but do understand that they work in quite a reasonable % of RLS sufferers. I also understand that it takes a few weeks following the infusion before you feel the benefit.

Sleep fragmentation..... Oh I do so understand that one, I've suffered from RLS sleep fragmentation for at least 40 years, awaking from each fragment to be absolutely wide awake. I have no answers. It may sometimes be caused by our medication, it may actually be a part of RLS.

[ellenalbert]

PS - Betty, I've just had a 3 night run on sleeping through the night fairly well. Before it was here and there. Still premature to make any conclusions, but it surely is SWEET!!!

[Polar Bear]

What bliss.

[badnights]

ellenalbert how lucky you are now that your PCP is willing to take a chance on iron infusions for RLS/WED! I did have one infusion, and it took about 4 or 5 weeks if I recall correctly before I started sleeping and feeling better. Ultimately I was able to reduce my medication to 2/3 what it was, for about 6 months./

[SunFlower15]

It’s great that you had an iron infusion! Depending on which actual iron preparation it was, you may need more than one. I also am a long-time vegetarian, and had a Ferritin of 14. I am able to tolerate oral iron, but my Internist saw the wisdom of greatly speeding up the process, so I had 2 infusions of Venofer (iron sucrose) in addition to staying on chronic oral iron.
It can actually take 10-12 weeks to see some real change, but it has helped me! I am about 1/2 way along the path of tapering down my Ropinirole dose, and I know the iron is assisting in that.
One thing that never seems to be mentioned is that if you are a blood donor, you must stop. As a retired nurse anesthetist who gave thousands of bags of blood to patients during my career-it pains me deeply to say that.
As a vegetarian I’m sure you have educated yourself on the best iron-containing foods, and the use of a cast-iron skillet.

[SunFlower15]

One more thing: you will have to have regular Ferritin blood draws, especially if you cannot tolerate oral iron. This means perhaps every 6 months, because the infusion only treats the symptom-it is NOT a one time cure.