Meds and Ferritin

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.
Jodee
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Joined: Fri Jun 27, 2008 5:06 pm
Location: California

Post by Jodee »

Ha - I was impressed, too, then Doc said it wasn't good enough! :) Thanks for your encouragement.

Jitterlegs
Posts: 90
Joined: Sun Jul 06, 2008 3:45 pm

Post by Jitterlegs »

I haven't had great luck with medications, either. Mirapex gave me no relief from RLS, but gave me terrible sleep and leg and head jerks. Requip worked some but made me spacey. And, neurontin was the worst. My doc said she would maybe try lyrica before narcotics, but I'm not sure I even want to try any more drugs unless I am severely disabled from RLS. The side effects so far have been much worse for me. I need good cognitive function for my job, and on the meds that is just not possible for me. If I could just stay home during the day and not be "held accountable" :twisted: for my actions, or lack thereof, that would be different! I don't think the dogs mind an airhead, but my boss is another story!! My ferritin wasn't that low--42, but after 2 months of iron supplements it is up to 59, so it is climbing, although I have seen no improvement for RLS. If it isn't up significantly when I go back, I am going to ask for an infusion. I'd certainly be up for that before any more medications.

Good luck and keep us posted!

Jodee
Posts: 26
Joined: Fri Jun 27, 2008 5:06 pm
Location: California

Post by Jodee »

I know what you mean about work. How nice it would be to deal with this on my own time. I never talked about my RLS at work for years, but in the past year or two my boss and some of my co-workers noticed how tired I was. And this past summer is when I started getting it in the daytime and they noticed me standing at my computer and standing during meetings! I had to tell them what was going on, and they've been amazingly understanding about it. Does your boss know you have RLS?

I highly recommend iron infusions if you can get them -- one iron infusion = 500 iron pills, according to my hematologist. However, I think most doctors won't ok them unless you're anemic. And a ferritin level over 50 is considered "good". Never hurts to ask, though. Good luck to you, too!

Jitterlegs
Posts: 90
Joined: Sun Jul 06, 2008 3:45 pm

Post by Jitterlegs »

Yes, my supervisor and co-workers know about me having RLS--they were the first to say something to me as I am ALWAYS moving my legs. I thought maybe it was just a nervous habit! However, I know they aren't as understanding when it comes to errors in my work. Bottom line is that my job is very detail oriented and I need all the brain cells working I can find. :wink: In the meantime, I am just hoping to get by without medications. It is hard to concentrate when my legs are going wild, but even harder when I am on medications that make it impossible to see straight let alone concentrate.

I would love to save the time it would take to consume 500 iron pills and just go with the infusion. I will be asking again at my next appointment. The last time I asked she just said that with the possible side effects, it isn't done that often, but didn't seem opposed to the idea.

Neco
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Post by Neco »

Having an infusion can be a big risk.. A lot of doctors won't do it because you could be allergic to the procedure and go into anaphylactic shock, which can be deadly. But if you and your doc are both willing and understand the risks then more power to you..

re: being able to function.. Lyrica will likely make you feel like a zombie unless you are one of the lucky ones, based on what I have observed from people complaining about it.. As for opiates, there are probably your best bet to stay functional at work. While they will make you loopy at first, especially if you've never been exposed to them, that side effect will fade as your body adjusts and tolerance goes up. It can take a while for that to happen though. But as long as you keep the dose as low as possible, I think much of it can be avoided.

My Ferritin is 100, and I have pretty severe RLS.. So keep that in mind and don't feel totally down if the iron infusion doesn't work for some reason. Some of us are just miserable regardless of iron anyhow.

Jodee
Posts: 26
Joined: Fri Jun 27, 2008 5:06 pm
Location: California

Post by Jodee »

Zach, thanks for clarifying the risks of iron infusions. I was orginally scheduled for 3 infusions, when I was called "profoundly anemic", but when all my levels were normal after 2, they said no more. So I don't think you can get them if your blood is "normal". That being said, there are different kinds of iron infusions and I've read they're not as deadly as they used to be.

I do feel like a zombie on Lyrica. I'm supposed to do this for a week, the combo of Lyrica and methadone. Then the doc wants to wean me off the methadone and keep me on Lyrica. I've been on the methadone since early July, when it helped me get off Requip. So I guess he's using it to help me transition from Requip to Lyrica. I'm reading on these boards, though, that some people take only methadone for their RLS...I'm thinking that might be better. Does your 10-15mg keep your RLS from rearing its ugly head? And do you take anything else with it?

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Jodee - some people can use Lyrica only...but I think they are the minority and usually those with pain. It's not that it can't or won't work, just that it doesn't work as well as other things - at least alone. It tends to work really well in conjunction with other things, based on what people here have said.

Methadone, or any opioid, on the other hand, tends to work well on it's own given you don't have other issues, like pain. For many people, an opioid will take care of ALL the RLS.

Methadone is great to transfer out of augmentation, but it's not the only option by far. Tramadol often works during the day and tends to make people more awake. It's not really an opioid but the result is very similar.

The last study results I saw about iron supplements showed that when the iron is increased 20% are resolved of RLS, 40% have improvement, and 40% are not affected.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Jodee
Posts: 26
Joined: Fri Jun 27, 2008 5:06 pm
Location: California

Post by Jodee »

Update - Stopped taking Lyrica and have done much better without it the past 2 nights. Yay! Pretty name...bad drug (for me, anyway). The 5mg of methadone seems to do the trick on its own. The legs wake me up a couple times but I go back to sleep after a few minutes of lunges. I feel better during the day, too, except I get drowsy while driving even though it seems as though I've had enough sleep. And I'm concerned about buildling up a tolerance to a drug like methadone. Does that happen?

Sleepyred
Posts: 13
Joined: Thu Sep 06, 2007 10:26 pm

Iron Infusions

Post by Sleepyred »

I have had 3 iron infusions - my 1st one was the largest dose - they gave me a test bag with 50 mg. of benedryl. When I did not react - they continued it.

I have had 2 since - with no reactions - they give me the benedryl as well. My ferritin levels need to be above 150 to even touch my restless legs. I have a great hematologist and he and I know when my levels have dropped when I start kicking my dear hubby at night - and I get the infusions every 4-6 months. Have had testing done and no one can figure out why my levels drop. I have severe reflux - so taking iron tablets is out of the question.

ViewsAskew
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Post by ViewsAskew »

Two very interesting posts...

I think I am going to press my PCP for an infusion.

Per the Lyrica, at least you gave it a try. It could have been great for you. It's sort of sad and annoying at the same time that we have to go through all these trials. But, it's also hopeful in that at least we have things to try.

Per the tolerance, some of us have tolerance, some do not. When I first talked to the RLS docs at one of the RLS Foundation conferences, I got the impression in was small. But, since then, several of us here have had tolerance, so I haven't a clue if we're the oddballs or if it's higher than they thought it was.

We were talking about tolerance in a recent thread, but I can't remember which one. Corrie posted a study in which they found that switching between opioids can help with tolerance.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Jodee
Posts: 26
Joined: Fri Jun 27, 2008 5:06 pm
Location: California

Post by Jodee »

I've also been told that Requip augmentation is rare, yet it's all over these boards. I wonder if people who augment are the same ones who become tolerant to opioids? As for the infusions, sounds like Sleepyred found the perfect hematologist. Mine told me he didn't know what RLS is and it's not his concern. It didn't matter to him that my ferritin was 1. It was all the other numbers that got him excited. These specialists have such large egos...How do you educate them?

ViewsAskew
Moderator
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Post by ViewsAskew »

The reason it's all over these boards is because the people who don't have trouble aren't looking for us. Sad, but true :( . While a few people with under control RLS that they haven't had difficulty getting or keeping under control do find their way here...they are few and far between.

So, we have a HUGE proportion of the outlyers- those who can't get treatment, get the wrong treatment, who don't repsond to "regular" treatment, etc.

According to the last RLS meeting I went to, it's the low ferritin folk who augment. But, that is prelim research.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Aiken
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Joined: Thu Jul 14, 2005 6:53 am

Post by Aiken »

Ann, I'm not sure that's entirely the case. I've seen a lot of regulars here try Requip or Mirapex for the first time. They routinely experience augmentation. It seems like augmentation is nigh standard, and certainly not rare at all.

I guess it may be that, for anyone whose RLS is strong enough for them to come here in the first place, the chances of augmenation are better than average. Hmm.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

ViewsAskew
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Post by ViewsAskew »

I guess we'll never know exactly, Aiken (though we could do a poll). Unless there has been a change recently, the studies do not show a majority of people augment. Then again, most of them don't run long enough to. However, the doctors I've talked to (not that many, but they are docs who see a lot of patients) still say that it's definitely the minority, not the majority, who augment.

The literature says Requip augmentation is 10% or so, with Mirapex being a bit higher, in the 20% range. While that's certainly not rare, that still means 8 or 9 of ten will NOT augment. During my last in-person chat with Dr Buchfurer, IIRC, I think he said it might be closer to 30% if the right study was done. Even if it's 30%, it still means 7 in 10 will not. While that seems high, it's still not a majority. Of course, it seems terribly high to me because no one warns about it so you don't know it's coming, nor do you know what to do when it happens. Of course, it really might be 50% if the right study was done; I doubt anyone is rushing to do that, though :x

Not sure my point...
Ann - Take what you need, leave the rest

Managing Your RLS

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.

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Helen518
Posts: 179
Joined: Wed Sep 17, 2008 5:02 pm
Location: Delaware

iron infusion - allergic reaction

Post by Helen518 »

Hi there -
I started seeing a neurologist who is also a researcher on RLS. He suspected I was augmenting on my requip (1mg in day time up to 3 times and 3mg at bed time) and when tested my iron deficiency was moderate to severe. I'm now off all my meds except for lorazepam, which he says won't help the rls.

I had my first iron infusion yesterday and about an hour after it ended I started to itch like crazy and I got the biggest hives you've ever seen - they were getting bigger by the minute -- It shocked teh heck out of me because I'm not allergic to ANYTHING. The clinic staff told me to go to the ER. THe ER gave me prednisone for 4 days (they wanted to give me benedryl but I told them I wouldn't touch the stuff.)

Its more than 24 hours since the infusion and I don't feel much different. How long before you find out if it helps or not? WIll I be able to get more iron? My cousin is in medicine and she said that I could have a worse reaction the second time around.

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