Dr. Meadows and update from RLS Librarian!

[Guest guest]

Hi gang,

Have had a medical problem to work on, they can run you ragged, and sorry

haven't got to posting my files at Jodi's site.

I have gotten a half dozen posts from Dr. Meadows; one today. I blocked all

future E-mail from him. I asked him on his last soliciting post to no longer

send me posts and he has paid absolutely no attention to it! I know his book

is available; I don't have to be told repeatedly -- I have the link to his

site saved. On AOL, go to Mail Center on tool bar and click on " Mail Control "

and go from there.

Also, below is part of one my files; Mirapex & Requip (will add ones Permax

to it also but enough to send out for example sake at moment). I wanted to

make sure, I have removed all identifying data to the best of my ability,

that putting posts from your guys is all right on Jodi's WebSite. Sure hope

so as the information is so valuable to others what your experience is with

different drugs, etc.

Many of these posts were trying to help my Mother who was going to see her

doctor and trying to decide on Mirapex or Requip. She decided on Mirapex and

has turned into a fireball. Doing marvelous! Appreciate and love all of you

who rallied to try to help her.

Please let me know! For example, could delete even first initial of person

sending post and just put X. Appreciate all suggestions and ideas so no one

will be mad or offended. This will help so many; especially newcomers.

Barbara

Hi, Tried Requip for only one week. Made my RLS very bad. I also have PLMD.

My entire body including my head started twitching uncontrollably on 1

Requip pill. Had to quit. Now I take Sinemet for the PLMD and 1mg Klonopin

for the RLS. P

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

OTHER 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 Gang,...I've been on Mirapex for a year and a half now. It works really

well for me. There have been times where it stops working for a few nights.

I have steadfastly refused to switch medications, as I have read from almost

everyone here, that we all have had periods of time that our meds don't seem

to be effective as they once had been.

I didn't realize how effective my meds were, until I went without them for

three consecutive nights. I thought I would lose my mind! So from that point

on, I decided that a couple of bad nights, or occasional flair ups for no

apparent reason, is still about 80% better than it was! Since Mirapex has had

few side effects for me, I have chosen to stay on it. It works quite well.

I do not take any sleep medication, other than an occasional Tylenol PM.

(Note: Tylenol PM might have benadryl in it which drives RLS nuts in

many!)...Sweet Sleep, E

Barbara, I hope I got your name right. I have been taking Requip since

probably last spring. I have had wonderful results with it. My RLS is severe

and I have tried many things. I had way too much rebound effect from Sinemet

and Permax made me sick. I also tried the Tasmar along with the Sinemet, but

it did not work. The only problem I have had with the Requip is that I get

real slepy right after I take the first dose of the day, which for me is

right after lunch. I understand that not many people experience this (so I'm

told - I'd like to hear from others).

Also, if I can manage to stay real busy right after that first dose,

sometimes (not always) I don't get so sleepy. the latter doses however do not

bother me. I take 3 x .5mg 3 x a day. Of course I did not start off that

high, but I've been at that dosage for quite some time now. I can't think of

anything else to tell you about it. I hope I have been of some help. Please

feel free to contact me as often as you wish if you have any questions at

all. I applaud what you are trying to do for your mother and I wish you the

best of luck. Good luck & God bless, N

Hi Barbara! I started taking Requip about a month ago and was doing fine

taking it 3 times a day with meals until 2 nights ago when my legs started to

jump again. I got up after an hour and took another pill (.25mg) and went

back to sleep. I'm seeing a new neurologist next Monday and I'm trying to

figure out what to do if the increased dosage doesn't work. I'll keep your

fingers crossed that it helps your mom. I did have some initial side

effects.... back ache, upset stomach, itching. Hope this helps!

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. B

Hi, I've replied individually to some of you regarding Requip (ropinirole)

....this is a relatiely new dopamine agonist, suggested by my neurologist,

used to treat Parkinsons Disease and effective for some RLS sufferers. I've

been on it for several months with more relief than the numerous other meds

tried, with fewer undesirable side effects.

My current dosage is two tabs of .25mgm an hour before bedtime along

with one tab of Tylenol and Codeine...and about 1:00 AM when symptoms

reappear, I take anothr one .25 mgm of the Requip plus another Tylenol and

Codeine. At the onset of treatment I was able to get by with a smaller dose

of Requip, but like some other drugs, I've had to increase the dose slightly

for relief, due to tolerance. I'm averaging 6-8 hrs of sleep a night in

comparison to 2 before! I've tried using it in the daytime, however,

especially when traveling, and haven't found a suitable dosage. It's either

too little or too much! Will let you know if I work this out. M

Those interested, I take Requip (J asked for suggestions other than Mirapex)

and have had excellent results. I'm certainly not suggesting that anyone

should take this, just relating my experience. Questions? I'll be happy to

answer what I can. N

Dear Group, After posting several of you to say what relief I've gotten from

Requip, of course, now TROUBLE in river city. I have taken it for about a

year and went from 1-2 hrs of sleep a night prior to the drug to 6-8 hrs of

good rest. Along about the 1st of March I had a bad bout of Irritable Bowel

Syndrome and it came and went several times. Lots of cramps and finally lower

abd painful ache, etc. But, the most profound realization was that my blood

sugars (I am a type 2 diabetic) were escalating at an alarming rate. I began

to eliminate my oral meds one at a time and when I stopped the Requip for one

night only, the next day.....no bowel pain. Of course I only slept a half hr

due to the extreme RLS. I went back on the Requip at a reduced dose and the

symptoms are back.

Am seeing my General practitioner tomorrow but my guess is, I am

discontinuing the Requip and will see what effect it has on my soaring blood

sugars and bowel symptoms. The package literature states these are infrequent

side effects, (at least the hyperglycemia) but I have been known to have the

more UNUSUAL med side effects. (Also have already had some bowel diagnostic

tests done and so far nothing remarkable to account for abd symptoms) So, as

I believe said, just when you think you're home free, guess

what.....back to square one. At this point, after all of the meds I tried

that made me ill or just didn't help, I feel pretty much in a pit...M

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, C

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. C

Hi, 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. D

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.--P

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 urinary 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.

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. L

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.