Ferritin results came back, and they are lower!

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
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Iron infusions

Postby restlessruthie » Tue Jul 07, 2009 4:03 am

Ann, Thanks for posting when you were so tired. Yes, I had been on Mirapex for a long time--the highest dosage allowed so my neuro swithed me to Requip--also a high dosage.. It has helped a lot as have the iron infusions. How long do these infusions last?

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Postby ViewsAskew » Tue Jul 07, 2009 5:34 am

I do not know about the infusions. Susan had them, she might know more.

It's very possible that the Mirapex and Requip have caused your RLS to be as bad as it is and it will be better simply when you can stop the dopamine agonists.
Ann - Take what you need, leave the rest

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Postby SquirmingSusan » Tue Jul 07, 2009 8:20 am

I really don't know how long the infusions last. I would guess as long as your ferritin remains at a good level. When I used to have periods they were so heavy that the infusions only helped for a couple months. Then I had a uterine ablation to keep from losing all that iron all the time. We gals often do have a hard time keeping the iron in.
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Kids and Ferritin

Postby mompaisley » Sun Dec 20, 2009 11:07 pm

Hi! My name is Paisley and I have just been diagnosed with RLS. I went to Mayo in AZ and was there for two weeks because up until then I had two docs in Connecticut where I live who thought I had MS, and two who thought I had Lyme disease. Imagine my surprise that it was RLS! But I believe it - because I knew I had it (from commercials), but never took it seriously because of my other medical concerns (pain, tremors, memory loss, fainting). I was shocked to learn that the RLS caused severe exhaustion (I'm a mom, I'm supposed to be tired, right??) that in turn caused my other symptoms. My ferritin level is 17. I have been told to up my iron, take salt pills to help with my incredibly low blood pressure and exercise moderately. If my ferritin goes up to 50 and I still have symptoms, then they recommended doing a full sleep study and starting me on Gabapentin.
Once home, I got thinking about my kids. My middle child (6yo) has had severe "growing pains" since she was 2. She was looked at for them both in San Diego and Connecticut. Everyone said growing pains. But they just couldn't understand the nightly screaming and crying because of pain in her legs. It has gotten better some, or she tolerates it better. She only wakes us 2 or 3 times a month now.
On a hunch, I had all three of my kids ferritin levels checked. The girls (4 and 6 yo) were 19 and my son (9yo) was 26. I have started them on Floradix, an herbal iron supplement. The pediatrician argued with me about it. So I found an article on rls.org about raising ferritin levels in children and am giving it to him with appropriate parts highlighted.
I am wondering how many people have had success with just raising ferritin levels either for themselves or their kids? And how long did it take to see a change? Thanks.

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Postby ViewsAskew » Mon Dec 21, 2009 3:04 am

So sorry you are dealing with this with the whole family.

A long time ago I read that about 20% of people had a complete remission when they increased their ferritin. Another 40% had some reduction. That leaves 40% on whom it had no effect.

We've had people here in all three categories.

It's a good thing to wait until the ferritin is increased before taking any of the dopamine agonists. Recent research is showing that people with low ferritin are more likely to have augmentation issues than people with higher ferritin. Mine was about 16 when I had it first test, and 8 the year later. I augmented very rapidly - certainly not proof of anything, but it seems to fit with the research.

My friend had great results using Floradix when her blood iron was extremely low. I used a similar supplement that was less expensive (but cannot remember the name). It helped increase my ferritin, but I never was able to get it to 50.
Ann - Take what you need, leave the rest



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Postby SquirmingSusan » Mon Dec 21, 2009 8:13 pm

I'm in the category of people who are helped a bit by having higher iron levels, but it doesn't make it go away completely. Mine is still pretty severe.

Check out Swanson vitamins online (easy to find on Google). They have really good prices on Floradix. I've had a couple sets of infusions; the last one almost a year ago. My ferritin was tested about a month ago and it was 80 or so. At least it's not dropping like it was when I had periods.

You may want to watch your vitamin D levels, as low levels are associated with chronic pain and increased risk of neurological disorders, cancer, depression and all. My RLS used to be really painful, but now that my D levels are normal, it's turned back into creepy crawly RLS. Not sure which is worse. :roll:

I really wish that doctors would quit telling us that exhaustion is "normal" in moms. Often there are other things going on.

I hope you and your kids can get some relief.
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Postby mompaisley » Sun Jan 24, 2010 9:46 pm

Thanks for the suggestions, Ann and Susan. I am frustrated. My ferritin is now at 21. So in the three weeks that I have been pounding the iron, it's only gone up 4 points! I did the math, and at this rate it will take 6 months for my ferritin to be up to 50.
So I went into my doctor and asked for an iron IV. He knows nothing about RLS so I brought him the MAYO protocol and the Johns Hopkins study. At first I thought he was really going to get it for me. But he found that the kind of iron IV used in the Johns Hopkins study is only allowed in the US for research at this point - and that study is no longer enrolling.
I hoped that he would proceed to a different kind of IV iron - but no. He just said keep taking the pills and come back in 8 weeks and we will recheck you. Gosh, I was so furious. I just cried.
So now that I am done with the pity party, I am looking for a new doctor. Anyone know of any doctors in the Northeast who are doing iron IVs? I hate to go see another doctor just to be disappointed. And, (I know I am preaching to the choir here) I seriously need some sleep.

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Postby ViewsAskew » Mon Jan 25, 2010 7:36 pm

My doctor wouldn't do them, either. Even Dr Buchfurer doesn't do them - he says that it's too experimental and they don't have enough data to suggest that it's worth the risks.

I'd call Dr Earley at Johns Hopkins and ask him. He might know....
Ann - Take what you need, leave the rest



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Postby badnights » Mon Apr 05, 2010 4:52 am

mompaisley, any luck finding someone to do iron infusions?


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