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Re: Good luck for many years. Now in the pits.
Posted: Sat Sep 17, 2016 8:00 pm
by stjohnh
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.
Re: Good luck for many years. Now in the pits.
Posted: Sun Sep 18, 2016 3:02 am
by Rlstader
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!!
Re: Good luck for many years. Now in the pits.
Posted: Sat Oct 15, 2016 2:23 pm
by shirleysguy
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.
Re: Good luck for many years. Now in the pits.
Posted: Sat Oct 15, 2016 5:23 pm
by Polar Bear
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.
Re: Good luck for many years. Now in the pits.
Posted: Mon Oct 17, 2016 1:15 am
by ViewsAskew
YAY!
And, we surely agree with you about getting this information to the doctors - even the specialists are often ten years behind.
Re: Good luck for many years. Now in the pits.
Posted: Mon Oct 17, 2016 8:48 am
by badnights
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.