Meds and Ferritin

Sleepyred · Post by **Sleepyred** » Fri Sep 19, 2008 11:29 am

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.

Post by **ViewsAskew** » Fri Sep 19, 2008 5:55 pm

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.

Jodee · Post by **Jodee** » Fri Sep 19, 2008 6:52 pm

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?

Post by **ViewsAskew** » Sat Sep 20, 2008 2:01 am

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.

Aiken · Post by **Aiken** » Sat Sep 20, 2008 3:43 am

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.

Post by **ViewsAskew** » Sat Sep 20, 2008 4:38 am

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

Not sure my point...

Helen518 · Post by **Helen518** » Sat Oct 04, 2008 6:17 pm

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.

Helen518 · Post by **Helen518** » Sat Oct 04, 2008 6:20 pm

Sleepyred - didn't the benedry make your legs crazy? I've been told to steer clear of antihistamines.

Post by **ViewsAskew** » Sat Oct 04, 2008 6:30 pm

It surely bothers most of us, but a few people can take it and not be bothered.

Jodee · Post by **Jodee** » Sun Oct 05, 2008 4:18 am

I was also given a shot of benedryl before my first iron infusion (I think it's pretty standard). It put me to sleep during the infusion. I woke up after half an hour with RLS, so I just stood while getting the infusion. The RLS subsided after about 20 minutes. I'd rather deal with that than hives.

Helen518 · Post by **Helen518** » Sun Oct 05, 2008 4:13 pm

that's good it only lasted 20 minutes. the last time i had benedryl i was miserable for 24 hours. good point - i guess it is better than anaphylactic shock . . .

Sleepyred · Post by **Sleepyred** » Mon Oct 06, 2008 11:30 am

Helen518 wrote:Sleepyred - didn't the benedry make your legs crazy? I've been told to steer clear of antihistamines.

No the benedryl did not bother me - except for making me so tired for 24 hours. I do not use it at all, except when I have an infusion. However, I've never had a reaction to the iron, so I only get 12.5 mg. with the iron. When I get an iron infusion - my ferritin is low enough that I would not be able to tell if my RLS gets any worse from the benedryl since it's already so bad. It usually gives me relief after a few days after the infusion and lasts for 3-4 months. I get 250 mg. per infusion (infed).

Good luck.....so sorry about your reaction!

Helen518 · Post by **Helen518** » Mon Oct 06, 2008 6:50 pm

Does anyone else feel like their RLS gets worse the more tired they are . . . it seems to be a vicious cycle.

I suppose it could just be that the more tired I am, the fewer psychological resources I have available to cope with it, and so I just perceive that it is worse . . .

Helen518 · Post by **Helen518** » Mon Oct 06, 2008 7:19 pm

Sleepyred wrote: It usually gives me relief after a few days after the infusion and lasts for 3-4 months.

Sleepyred - how many is a few days? It is now Monday and if anything I feel worse . . .

Post by **Polar Bear** » Mon Oct 06, 2008 7:35 pm

Hi Helen

I don't know that I can say mine gets worse when I am more tired or not. To tell the truth, I find it difficult to determine a pattern or a particular cause. Just some times are worse/better than others and I am thankful to have medication.

Restless Legs Syndrome (RLS) Discussion Board

Meds and Ferritin

Iron Infusions

iron infusion - allergic reaction

benedryl administered with iron infusion

Re: benedryl administered with iron infusion

RLS worsen with greater fatigue?

Re: benedryl administered with iron infusion