Re: Mirapex, Requip Compilation & Ferritin Info!

[Guest guest]

Danna and Gang,

Just go do a search on the Internet under " Mirapex. " Lots of helpful goodies

come up!

Below is a compilation of the posts I received on Mirapex on my Mom's behalf;

thanks so much each and everyone of you who responded. You guys are the

wonderful!

Only one person reported taking Requip and her legs went into a frenzy with

it; forget that. SUCCESS! Mom's neurologist this morning gave her a six week

kit with samples of Mirapex and a prescription. Pray that it helps her like it

has so many others. I ran off about two dozens posting from the Parkinson's

Forum at the Harvard/Massachusetts General Site, most of which were very

favorable. Very few side effects were reported as the RLS patients report per

below.

Several asked what the Ferritin Level is and at the end of this post is Dr.

Elaty, the Medical Advisor of the Central Florida RLS Support Group (meets

Orlando, FL 1-10-99; 2nd Sunday every month -- we have a terrific group of

which and Jude of this group are members), has to say about the

Ferritin Level of which 20% to 25% of RLS patients are low and when it comes

up to 50, they often dramatically improve.

My mother is one of those dramatic examples of going from RLS killing her for

lack of sleep to gently snozing right now when her masked iron deficiency was

uncovered vai the Ferritin test! Several other things helped also; B-12 shots

which two from our group report per below, helped them and ULTRAM. Latter

helps her back pain which is more noticeable trying to go to sleep also.

Barbara

HI BARABARA:

I HAVE BEEN TAKING MIRAPEX WITH GREAT SUCCESS FOR 6 MONTHS OF NUMEROUS OUTHER

MEDS I TAKE IT WITH KLONOPIN THE REQUIP WAS A DISASTER AND SENT MY LEGS IN TO

A FRENZY. HOPE THIS SMALL INFO HELPS YOUR MOM.

Hi, I did not find that permax did much for me either, sinimet worked but too

much and you have other problems. The doctor has me on 3 mirapex a day and I

feel better if I take less I felt like my arms and legs ached more, but each

person is so different and you just are desperate to try anything.that give

some relief. Good Luck and I have been there with my Mother, so understand

what you are going through.Blanche

Barbara,

I also had a significant improvement when I began taking B12 shots. However,

it didn't last, only for about 2 months. My dr. was also puzzled by this. I

am convinced there is some kind of connection since one known cause of rls is

anemia. But I am probably not qualified to make that assumption. I do know

it was not a placebo effect because I didn't start the B12 shots for rls. I

had other dificiency symptoms i.e.; frequent canker sores. I do not

understand why it had an effect

on the rls only when I was building up on the B12 stores. Hope this helps

someone out there. Thanks, Chris

I have been taking mirapex .125mg at about 8:00 at night for about 3 months.

It has been wonderful! I was on sinement but the augmentation was so bad that

I could hardly sit still during the day and sometimes woke up very early with

terrible RLS. Was nice to sleep at night but there are times one has to sit

still during the day!ie; meetings, riding in a car, etc. So I usually had to

take hydrocordone for those times. With the mirapex that is all I ever have to

take. It is so good it makes me nervous! Because other things have worked

for awhile and then guit. I too am B12 deficient and take shots monthly. My

dr. thought I might have to take a larger dose of mirapex-.25 but so far this

works fine. I have no side effects. Hope this helps! God bless. Chris

From: wildthang27@... (Debbie A Rupp)

Sorry to hear about your Mom. I hope this is not to late for you. My Mom is

82 and takes Mirapex. She has been taking it for several months now and has

severe RLS/PLMD. THe Mirapex has helped her tremendously, she still has

occasional nights where it doesn't seem to work, but for the most part she is

much more comfortable and able to deal with life better. Hope this helps.

Good luck to your Mom. Debbie

I am one of the group who has been taking Mirapex since June with very good

results. I do have insomnia from it, but I don't mind being awake too much

when I can at least relax and lie in bed with no RLS. I take Vicodin that

helps me sleep most nights. I generally feel better than I have for years. I

too have gone through Sinemet (rebound and augmentation) and Permax (nausea)

and am very happy with Mirapex.

Perhaps of more significance to your mother's case is a comment my GP made

during my last visit. He called Mirapex a " good drug " and said that his

Parkinson's patients are doing well with it also.

I have actually decreased my dosage from 0.5 mg to 0.375 mg per day. For my

RLS I take it in divided doses during the evening. I recently started

starting earlier to see if it helps the insomnia. It's too early to tell if

that helps.

Good luck with your Mum.

--, 52, Western NY state.

Barbara--I took Sinemet and almost immediately, like the next day, started

having rebound during the day in my arms even when I would just sit down in

the recliner. Took Mirapex for a week or so and got a urinary tract

infection. Stopped taking it for about two weeks and went back to the Sinemet

or Darvocet and Klonipin. Two weeks later I tried the mirapex again. Got

another uninary tract infection. After the Sinemet became so intolerable and

I wanted to quit taking the Darvocet, I began the Mirapex again, .125 to .25

at bedtime with two capsules of cranberry which I got at the health food

store. I went down to one capsule when I didn't have any symptoms for about a

week and now only take one capsule about two or three times a week. Still

take the Mirapex. Have been doing this for about a month now and no sign of

uniary tract infection.

Ferritin Levels? Hmmm. Have I missed something? Could this be a cause of

RLS? I'll ask my Neuro about it if it helped your mom. (See below on Ferritin

by Dr. Elaty, the Medical Advisor for the Central Florida RLS Support Group!)

I have a friend with Parkinsons. He takes Mirapex, too, and is doing much

better now since taking it now for about six months. I don't know what he was

taking before. We share stories about the Mirapex. I feel for him and feel

blessed to *only* have RLS and not Parkinsons. *My* mother used to tell me

when she was living, " Honey, be thankful for what we have because there is

always someone that is worse off than we are. "

I hope your mother does well and gets the medication that is right for her.

Take care of her.

Lindy B. (49) in Southeast Texas

I to am taking sinemet for restless leg, along with permax, 0.25mg at bedtime

with good success. I have not heard of the other drugs u have mentioned. I

have also found that when my potassiun gets high I'm ready to climb the walls

with my legs. Good luck with your mom.

Dear Barbara:

I've been on Mirapex for 10 months now, and my symptoms are 80% relieved. I

take one at about 6:00 PM, as it did cause insomnia when I take them later.

I am a recovering addict, so I cannot take sleeping pills, or any pain

medications at all. So for me, this had to work, or I was in big trouble!

Being the age that your Mother is, she should not be on any sedatives if she

can help it.

Mirapex did stop working for a few weeks. I had to up my dose to two a night,

one in the middle of the night. But it started working like a charm again,

and I am back down to one again. I've had no symptoms during the day, as I

did with Sinimet. For the first two weeks on Mirapex, I experienced frequent

urination, dry mouth, and increased appetite. I had aching behind my knees.

But then, they left me. And I have not felt better in 15 years... I take

0.125 mgs. The prescription is written as such, Take one tablet to start.

May increase to 1 tablet three times a day. I increased after several weeks

to two. Good Luck Barbara, God Bless your Mom.

Don't know if this will be of any help but I have been taking Mirapex since

May 1998 and hve found tremendous relief. I am taking 0.125mg 2 times a day.

One in the morning and one at night before bed. I still do not sleep through

the night but do not have to get up and wlk around to relieve discomfort. I

would also have a problem at work and that is gone. Would be glad to answer

any questions you may have that might help your mother.

Well I have had some stiffness in my legs at times in the past but not

recently. I have had sleep problems for a long time including sleep walking

which improved as my anemia did. Nothing else that I could attribute directly

to Mirapex.

Good Luck tomorrow. Sonya White NY

Dear Barbara,

i have been taking mirapex about a month now . I did have problems sleeping

the first tryed mirapex, I was taking all 3 pills at night . I now take then 1

pill three times a day and have less problems sleeping but do have some muscle

soreness I think is from the mirapex. I stopped taking it a while and had less

muscle aches, started back and the soreness returned . I hope this will help

your mother. 37 Arkansas

Hi, I have been taking Mirapex for 3 months and I feel for me it has been much

better then permax, I also take tylenol w/coedine#3 and a 1/2 tab of sinemet.

I have had the RLS most of my life, my Mom had it and mine is a case where

it's there every night. and becomes painful, I think you have to try it and

see how she does, let me know if you want more information. Good Luck Blanche

Fox

FERRITIN (THEY CALL ME THE FERRITIN LADY HERE AT THE GROUP; I became an ardent

fan when I saw how much bringing this up helped my Mother. RLS was killing

her; of all the things we tried, this helped the most!)

From Elaty, M. D. Treatise on RLS:

Low Ferritin: Binding protein for iron; it is one of the best gauges for how

much in iron your body has stored or in a " saving account " you might say with

or without anemia. It is estimated 20% to 25% with RLS patients have low

ferritin, i. e., it is usually advisable to be 50 to 100 for most RLS patients

according to current research.

What is acceptable for each individual is a matter of judgment and all the

facts; not what some lab says is " normal. " Do not accept that the results were

" normal " for you, ask for the level or copy of the lab results. For example, a

" normal " ferritin level according to one lab is " 12 to 150 " but a level of

under 50 might not be acceptable for an RLS patient. When it rises to 50 (the

level now recommended by the doctors at Hopkins), marked improvement

usually occurs and sometimes minor improvement between 50 to 100.

The use of a new medicine that improves access to iron in the body has been

showed to reduce RLS. This medication is called erythropotein.

If a condition such as arthritis, inflammation or any chronic illness (besides

RLS) exists, the value of a ferritin level might not be accurate. There are

other more sophisticated ways of measuring ferritin that reflect iron stores,

but they are usually not needed. And those iron supplements with Vitamin C

might be better absorbed. Caution: Too much iron can be very harmful: be

tested and check with your physician before taking any iron supplements

please!

Fran,

Insist that you have a copy of the lab work showing your Ferritin Level; my

mother's Internist office reported when she called hers was " normal. " Normal,

hell. It was 8. An RLS patients should be 50 to 100; iron helps the brain take

up dopamine which they suspect many RLS patients are deficient in.

The brands of Black Strap Molasses vary in RDA of iron so read them carefully

before buying one! And chicken livers, spinach, dark meat of chicken instead

of the white meat, etc. My Mom could not take iron supplements as they were

constipating and upset her stomach.

Let me know what your actual Ferritin Level is. Can't trust anyone but

ourselves.

Barbara