Parkinson's Disease Tulip


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Old 08-04-2009, 07:59 AM #1
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Default Girija;

interesting you are having withdrawal issues with Mirapex. I quit cold turkey after my DBS. (Max dose of 4.5 mgs daily) My question is; do you think your
"addiction" is physical or pyschological? I never had any yearnings to go back on it myself.

Charlie
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Old 08-04-2009, 09:37 AM #2
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Default Withdrawal well-documented

Quote:
Originally Posted by chasmo View Post
interesting you are having withdrawal issues with Mirapex. I quit cold turkey after my DBS. (Max dose of 4.5 mgs daily) My question is; do you think your
"addiction" is physical or pyschological? I never had any yearnings to go back on it myself.

Charlie
We all respond quite differently to agonists it would seem and I question why neurologists would even use it in differential diagnoses. The response to this drug class varies widely. For me, there is little benefit, if any at all with a low dose and I can't tolerate high doses due to side effects.

girija, I too have had withdrawal effect at a very low dose (.75 mg daily). The withdrawal feels physical, at least in my case. I think feeling like you belong in a methadone clinic and calling your doctor to beg for some sort of substitute to help you get through it, is indicative of a withdrawal phenomenon of some sort. If I even missed a dose of it, my body let me know in no uncertain terms who was boss. Google it and you'll find this is not uncommon.

Just my opinion, but wouldn't Sinemet be the standard to use in running an "ldopa challenge"? This does not mean that Sinemet has to be started at this point, but frankly, if my neurologist were testing me, it's the only drug I think that has been around long enough and works consistently enough to make a definitive diagnosis. Anyone else? My 2 cents.

Laura
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Old 08-04-2009, 03:35 PM #3
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Default Just the opposite

My experience with agonists is just the opposite of most of yours. I started nine years ago on Permax. I could have been the poster child for it. I was well until they took it off the market because it was killing people (and still I had to seriously question whether I could give it up.)

The start-up was difficult, it made me sick all the time for about six weeks then not a sign of a side-effect. When they took it off the market I was put of first Mirapex the Requip. I could not tollerate either of them. Sick as a dog. So began the Sinemet. Two years of that working fairly well, but I could not control the dystonia with Sinemet so I tried Neuropro(?) which worked fine but they took that off the market.

Hearing that agnosts worked better with dystonia I started back with Requip, very slowly. Now I take 15mg a day and it is working great. I have had no problems with it at all and it is quite effective on the dystonia with fewer side effects than Sinemet alone.

What can we say, it's a designer disease. I started taking meds as soon as I was diagnosed and I think it freed me. I was working and hiding and the effort pre-medication was exhausting. It all depends on your circumstances.

Good luck,
Pam
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Old 08-11-2009, 10:38 AM #4
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Default requip xl didn't work as well 4 me

i have been on requip for roughly 8 yrs. when we switched to XL it didn't really work and made me feel "speedy". back to plain requip - much better for me. 5mg 3x daily.
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Old 08-04-2009, 03:43 PM #5
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Default If I knew then what I know now....

I've been on meds for nine years now. Started with Requip and added Sinemet. Used selegeline for a while but it is heavy on the liver and poses a potential problem with some of the alternative stuff I try so I dropped it. I am at max dose of Requip of 24 mg but was up to 32 mg for awhile. I seem to tolerate it extremely well. Add 700 mg of Sinemet and you have my med history.

In retrospect, I wish that I had hit things like turmeric, etc earlier and harder, but hindsight is always better. For me, the bottom line is to resist adding or increasing a drug as long as possible.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 08-04-2009, 10:18 PM #6
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Default

Charlie,
I was taking 3mg per day and managed to cut down to 1mg in the morning and 0.5 in the evening. I have both physical and psychological symptoms. Muscles ache and the pain is hard to describe, deep inside the muscle and feel restless;
I have to try very hard not take my usual dose, some days I give up, thats the routine for the last 3 months, However, when i have other things on my mind and forget to take meds, none of these symptoms show up! thats why I call it addiction, clearly psychological need for Dopamine high and in its absence physical pain. Thats my analysis........Lucky for you, you didnt have to deal with that!
girija

Quote:
Originally Posted by chasmo View Post
interesting you are having withdrawal issues with Mirapex. I quit cold turkey after my DBS. (Max dose of 4.5 mgs daily) My question is; do you think your
"addiction" is physical or pyschological? I never had any yearnings to go back on it myself.

Charlie

Last edited by girija; 08-05-2009 at 06:27 AM.
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Old 08-05-2009, 05:13 AM #7
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Default My experience

I was diagnosed 3 years ago at the age of 63. Main symptom slight tremor and rigidity on the right side. From day 1 the neurologist wanted to put me on cinemet but I refused.
Helped by this forum and my own search I have been taking a load of supplements including mucuna , creatine and whey and a strict routine of exercise about 1 hour in the morning and 1 hour in the afternoon. Quality of life is good enough. To deal with tremor I started Kemadrin about 6 months ago which seemed to help. I visited same neurologist after 3 years and he said I should be on cinament but he said that he will not object if I am happy with my own "invented" regime !
I must add that I have the support of a wonderful wife and I do some work from home and I try zero stress ..and listen to music

Imad
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