mirapex vs iron-my experience

lynnrls · Post by **lynnrls** » Wed Apr 11, 2007 2:47 am

I was taking 2 mirapex tablets at bedtime for my severe rls, and while it worked, I found that I was hospitalized twice and in the er multiple times for severe shortness of breath and recently heart rate >120 at rest. Everyone thought I had asthma (had it as a child) or possibly just exercise induced asthma. Finally, my symptoms got so bad that on the last hospitalization the doctors mistakenly thought I had a pulmonary embolism, then two pulmonologists said rule out primary pulmonary hypertension. Both of these last two dx are life threatening by the way--no fun at all to worry about. Finally, I went to Mayo Clinic. Better choice! They did a heart cath and told me I was fine--my symptoms were due to the combined effects of three medications--Mirapex, meridia, and synthroid. They took me off of the first two and reduced the synthroid. Put me on 150 mg of iron twice per day, plus vitamin c to help absorb the iron. I am so excited that the iron fixed the rls. Even after one year of tx., my serum ferritin level stays low and I haven't weaned from the iron? Any one know why this is??

SquirmingSusan · Post by **SquirmingSusan** » Wed Apr 11, 2007 3:13 am

Lynn, I am so glad that the iron has helped to resolve the symptoms of RLS for you. And sorry to hear about all you went through with the meds. Scary.

My ferritin was 8 in January, and they like you to get it to 50 when you have RLS. I'm hoping that will help with my symptoms, by it's a slow process. I have very heavy periods, so that doesn't help. But I'm 50 years old, now, so hopefully that will cease to be an issue.

Sometimes they give iron infusions to get the iron levels up. I know I was anemic a few years ago and had to have something like 12 iron injections in the rear end. Ouch. But it was a lot faster than taking the daily iron. Something to ask the doctor about.

I hope that taking iron continues to resolve your symptom!

Susan

becat · Post by **becat** » Wed Apr 11, 2007 3:26 am

Susan, how fast did your iron raise?

I'm seriously thinking of the IV infusion or the shots. I know there is side effects from the IV, but taking iron is not been an option for me for months now. ( :roll:

another health issue is still at hand)

2 months ago I know I was at 8 as well, but I feel I would feel safer with summer coming on with a higher number.

Your right it's tough and a slow process by mouth to raise iron. UGH!

Hi Lynn and welcome to the board.

Iron and how it is used or even stored in our brains is a big question in this community.

I have always had RLS and always taken supplements.....my family even cooks in iron pot and pans.
With that said, my mother was always saying I was anemic while I was growing up......they didn't do much blood work then and I didn't see many doctors, past the allergy guy, much of my life.
I wish I knew what to tell you, I would go to that, if I had the answer too.
Hopefully the medical research world will surpass us soon.
Lynne

SquirmingSusan · Post by **SquirmingSusan** » Wed Apr 11, 2007 4:15 am

Lynne, I had the shots every other day for a couple weeks, and that took me from a hemoglobin of about 9 up to the normal range. But raising the hemoglobin level is a much different thing from raising the ferritin levels.

When I was getting the shots it was shortly after having gastric bypass surgery, and I couldn't tolerate iron pills in any form. I found a formulation that doesn't make me sick, now, but it is a slow process. Especially in some of us gals.

Do you plan on taking up extreme sports in the summer or is it because your RLS is worse in the summer. :lol:

Susan

becat · Post by **becat** » Wed Apr 11, 2007 4:27 am

Hi
Nope my RLS just kills me in this Texas heat.

Extreme sports for me is falling at bowling once a week. LOL

No I understand outer and brain iron, I had to explain this to one of the round of docs 2 months ago. DUH, my ferritin level does not count me as anemic if my hemoglobin is ok. LOL I was shocked when I asked too many questions and found out they were calling me anemic because of my ferritin level. LOL It did give me a good laugh though. My entire cbc came out wonderful, cept for ferritin. Go figure.

I have a hard time with oral iron. Sensitive tummy, too much damage done years ago when I didn't sleep for days. Body just breaks down itself if you can't give it healing sleep.

Maybe I can find an easy iron to take, I'll ask on the 16th, if I'm cleared by then to take it. PM me with the brand or name maybe, I'll ask if it's a possibility for me.

Thanks.
Hugs Lynne

lizbestill · Post by **lizbestill** » Sat Jul 14, 2007 9:13 am

Lynne,what did the dr tell you when you went? My ferretin level is about 7 but like you, it hurts my stomach to take the iron, so I quit taking it. Like Susan, I have heavy periods and considering a hysterectomy which is what my ob wanted to do 2 years ago. I'm going to a new neuro on Monday. Elizabeth

walkindafloors · Post by **walkindafloors** » Sun Jul 15, 2007 3:41 pm

Lynne, am I understanding that long term lack of sleep breaks down your body so that it affects the consumption of iron?

bharrod · Post by **bharrod** » Wed Jul 25, 2007 2:42 pm

Without seeing a doctor, what is a "Safe" amount of Iron to take daily. Because I believe that the federal requirements say that a person only needs 18mg to meet the 100% daily requirement. I am currently taking 27mg (150%) of the daily requirement for iron. I have not noticed a difference yet, but then again how would I, I am on that stupid drug requip. I hate that drug. But anyway, I think there is a link too between RLS and Iron. Also, is it best to take Iron during the daytime, morning, or at nighttime?
Thanks,
Mia

red56 · Post by **red56** » Wed Jul 25, 2007 3:17 pm

be sure to take the slow-acting iron, some generics are called Slow-FE or something like that. It cuts down on the stomach problems. I take one at breakfast and one at dinner.

Post by **ViewsAskew** » Wed Jul 25, 2007 5:21 pm

You really shouldn't take it without getting a ferritin test. While this doesn't happen often, you can have too much iron and still have RLS. This can actually be harmful to you and cause a condition called hemachromatosis...

KBear · Post by **KBear** » Wed Jul 25, 2007 6:27 pm

I agree with Ann however I would add that it is generally OK to take up to 18 mg of iron daily without first checking your iron levels. This is what I've been doing. My annual physical is in September so until then (when I can get my iron level checked) I am taking a multi vitamin plus iron which includes just 18 mgs of iron.

If my ferritin levels are low, and I suspect that they are, this low dose probably won't do much to fix it but it certainly can't hurt. (I hope)

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mirapex vs iron-my experience

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