Good luck for many years. Now in the pits.

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stjohnh
Posts: 317
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Good luck for many years. Now in the pits.

Postby stjohnh » Sat Sep 17, 2016 8:00 pm

shirleysguy wrote:Had iron checked. 60, but PA said other numbers indicated plenty of iron in the blood, so wasn't comfortable supplementing. ....


The normal range for ferritin used by doctors is that anything above about 20 is "normal." Problem is, that "normal" is for enough iron to make red blood cells (ie prevent anemia). The brain needs more iron to function properly and there isn't a good test for brain iron, so the ferritin is the best we currently have. It is possible to get too much iron, but ordinarily there aren't problems with too much unless the ferritin is over 500.

I don't think it is known why RLS patients have low brain iron. I think the main theory is that one of the genes coding for brain iron transport is abnormal.
Blessings,
Holland

Rlstader
Posts: 10
Joined: Fri May 27, 2016 3:18 am

Re: Good luck for many years. Now in the pits.

Postby Rlstader » Sun Sep 18, 2016 3:02 am

Oh good grief!! Sorry, that was 1 mg of Mirapex 3 times a day. That's what I get for writing in the middle of the night!! Sorry for the confusion!!

shirleysguy
Posts: 5
Joined: Sat Sep 10, 2016 2:45 pm

Re: Good luck for many years. Now in the pits.

Postby shirleysguy » Sat Oct 15, 2016 2:23 pm

Sorry not to update sooner -- been away with limited internet access. My doctor had encouraged me to increase Ropinerole up to 4mg and I pretty clearly augmented with terrible effect. With advice from here and the Medical Bulletin I titrated slowly down and got off the Ropinerole. I had been on Mirapex for many years and started to have symptoms. Didn't know that the Benadryl I had started a few months earlier could have been the reason for my symptoms. A reasonable hypothesis seemed to be that when I got off the Ropinerole I could go back to the Mirapex, so as I got to the end of the Ropinerole down titration I titrated up on the Mirapex and am now doing fine on .125 mg Mirapex twice a day. (Had been on .5 per day, but wanted to try just the ,25 per day as info here suggested .25 per day might be the max one should take.) Advice from here helped so much and I am so grateful.

Sure wish the information from the RLS foundation could find its way into the "evidence based " sites used by doctors.

Polar Bear
Moderator
Posts: 6810
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Good luck for many years. Now in the pits.

Postby Polar Bear » Sat Oct 15, 2016 5:23 pm

We are so glad this has worked for you.
I keep drumming the RLS Foundation each time I visit my GP (here in UK) and I know he has been on the site.
It would be wonderful if it was a regular port of call for any GP presented with what might be RLS.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Good luck for many years. Now in the pits.

Postby ViewsAskew » Mon Oct 17, 2016 1:15 am

YAY!

And, we surely agree with you about getting this information to the doctors - even the specialists are often ten years behind.
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.

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Good luck for many years. Now in the pits.

Postby badnights » Mon Oct 17, 2016 8:48 am

even the specialists are often ten years behind
Sometimes they're worse than the GPs.

Shirleysguy I'm so glad you found something that works and that you know enough to keep the dose as low as possible. If ever you seem to need a dose increase, you can instead try adding iron, adding a medication from the anti-convulsant class (like Horizant or pregabalin/Lyrica), adding an opioid, or even switching to extended-release pramipexole, all of which might keep the DA dose low enough to prevent augmentation.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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