Parkinson's Disease Tulip


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Old 11-15-2013, 01:10 PM #1
Mohammed Yousif Mohammed Yousif is offline
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Default sinemet withdrawal.

Hello.
My mother was diagnosed with Parkinson's since 2007. Since then due to many problems and issues (including immigration since we're from iraq) she has been very neglectful when it comes to her disease.
Upon initial diagnosis the doctor prescribed sinemet and she has been using this drug (and occasionally abuse it upto 6-8 pills "25/250 tabs" per day) since her initial diagnosis six or seven years ago.
recently her condition got much worse and we finally managed to convince her to see another neurologist. My mother is 50 years old now. The new diagnosis after full brain MRI was that her PD was actually a result from damage in the basal ganglia of the brain due to blood clots/hypoxia (ischemia) in that area of the brain.
He prescribed many other drugs to her should STOP sinemet abruptly. He prescribed sifrol (aka. Mirapexin or Pramipexole) three times/day instead.

since she stopped taking sinemet three days ago her condition got really bad, she can barely mover her body. although her hands aren't shaking as bad as they were but what good is that since she can't mover her body at all? she can't get up of a chair unassisted, she can't lift anything heavier than a small bottle. she's simply a wreck now comparing to what she was before stopping sinemet.My sister had to feed her during lunch today because she couldn't move her arms.
while she was taking it she was capable of moving, cooking and even working for 4 hours everyday (she's a pharmacist).


I called the doctor and he said sinemet is still forbidden for her, and if her condition gets so bad i can give her another drug instead called Requip (Ropinirole).
Is the doctor right? I'm so confused and just seeing her in this condition is painful. I can't imagine what she's going through.
I want to know is this temporary? is she going to get better? should she start taking sinemet again?
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Old 11-15-2013, 02:30 PM #2
soccertese soccertese is offline
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i'm not a doctor so can only comment on what i know about the drugs you mentioned and not your mother's specific condition.
each drug treats parkinson's, sinemet 50/200 is a controlled release that contains levodopa and carbidopa and is the best drug for treating symptoms. the mirapex mimics the affect of levodopa and is given in lieu of levodopa usually to younger patients. both are effective in treating symptoms and the trend is to give mirapex to younger patients and reserve the sinemet for later since it is thought that early treatment with sinemet can lead to involuntary movement possibly occurring years later. a lot of people take mirapex and requip, they aren't new drugs.

i'm not going to second guess your doctor but i do know it usually takes a few weeks to gradually work up to an effective dose of mirapex, starting immediately with an effective dose which i think is .5mg 3times a day would make you sick. what strength is she taking and how often?

i am taking sinemet 50/200 and if i stopped cold turkey and started mirapex i'd be just as miserable. there might be a reason though why he made her stop immediately.

i always suggest you get a used copy of TJE PARKINSON's DISEASE TREATMENT BOOK by AHLSKOG to better understand the disease, it covers changing drugs.

his suggested mirapex schedule is start with 1/2 of a .25mg tablet 3 times a day for 1 week, then .25mg 3times a day week 2, then .5mg tablet 3 times a day, this is the dose when a benefit is usually noticed and then increase dosage based on benefit vs. side affects.

to quote him "SUBSTITUTING A DOPA,MINE AGONIST DRUG FOR SINEMET CAN'T BE DONE OVERNIGHT". keep in mind this is a generalization.

best of luck.
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Old 11-15-2013, 04:31 PM #3
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Default This neuro is a horse's ***

IMHO of course He has no respect for his patient. As a trained pharmacist she should not have left that office with so many unanswered questions.



Quote:
Originally Posted by soccertese View Post
i'm not a doctor so can only comment on what i know about the drugs you mentioned and not your mother's specific condition.
each drug treats parkinson's, sinemet 50/200 is a controlled release that contains levodopa and carbidopa and is the best drug for treating symptoms. the mirapex mimics the affect of levodopa and is given in lieu of levodopa usually to younger patients. both are effective in treating symptoms and the trend is to give mirapex to younger patients and reserve the sinemet for later since it is thought that early treatment with sinemet can lead to involuntary movement possibly occurring years later. a lot of people take mirapex and requip, they aren't new drugs.

i'm not going to second guess your doctor but i do know it usually takes a few weeks to gradually work up to an effective dose of mirapex, starting immediately with an effective dose which i think is .5mg 3times a day would make you sick. what strength is she taking and how often?

i am taking sinemet 50/200 and if i stopped cold turkey and started mirapex i'd be just as miserable. there might be a reason though why he made her stop immediately.

i always suggest you get a used copy of TJE PARKINSON's DISEASE TREATMENT BOOK by AHLSKOG to better understand the disease, it covers changing drugs.

his suggested mirapex schedule is start with 1/2 of a .25mg tablet 3 times a day for 1 week, then .25mg 3times a day week 2, then .5mg tablet 3 times a day, this is the dose when a benefit is usually noticed and then increase dosage based on benefit vs. side affects.

to quote him "SUBSTITUTING A DOPA,MINE AGONIST DRUG FOR SINEMET CAN'T BE DONE OVERNIGHT". keep in mind this is a generalization.

best of luck.
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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 11-15-2013, 06:33 PM #4
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Default abrupt sinemet withdrawal dangerous

I, too, am surprised your mom just took this guy's advice, being a pharmacist herself. At a minimum, a very cursory glace through the readily-available literature out there shows that abrupt stopping of sinemet can cause death, this is why the "drug holidays" people used to do are no longer allowed, unless you can convince your doc to let you, and go to the hospital for monitoring.

I would be very careful taking Mirapex as well, you should know that it is next to impossible to get off of, and has some nasty side effects. I have never heard of anyone starting this drug at anything higher than .25mg at a time, so I would be very very careful and for sure, get a second opinion ASAP....I might even be tempted to go to the ER if it were my mom. Good luck.
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Old 11-16-2013, 03:25 AM #5
Mohammed Yousif Mohammed Yousif is offline
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Hello, thanks for replying.
Last night my dad, two sister and I (we are all doctors/pharmacists) convinced her that the doctor is actually wrong. she is so persistent that her body will respond to mirapexin and also start making dopamine in two weeks or so. I know for a fact that she stopped taking sinemet not in order to follow the doctor's orders but to punish herself for abusing sinemet.
Anyway, last night (16 hours ago) we finally managed to convince her to consult another doctor and to take a very small of sinemet since. She took half of her usual dose of sinemet and within two hours she was back to normal again. except for her gaining back the ability to move, go upstairs..etc. she was also in a very good mood and in a very good mental state.

However, she woke up this morning three hours ago, the effect of sinemet was gone and now she refuses to take it again and she refuses to see another neurologist. And of course, she cant move.
I will buy the prescribed "requip" today, I hope it makes a difference.

All I hope for is that this doctor knows what he's doing because all the sources disagree with him. Except for my mom
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Old 11-16-2013, 10:57 AM #6
Mohammed Yousif Mohammed Yousif is offline
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Requip didnt work.. The doctor won't pick up the phone, she cant lift her hand now and she wont take sinemet, she wont go to a hospital and i dont have a clue what to do.
I'll visit that doctor first thing tomorrow
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Old 11-16-2013, 09:08 PM #7
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Am wondering why she considers she has 'abused' sinemet. Is this because she has read it, because she has gone over the prescribed dose, or she has not been compliant in some way? If it is helping her condition and keeps her moving I wonder about such a resistance to taking it.

I would have thought a move sideways tapering one medication while increasing the other would be a more standard approach to meds.

I would want a second opinion, but that is me.

I have only your description to go by, and from what you say this is not a medication that is having no effect. In which case after 7 years most people would have problems of abrupt withdrawal of any medication, and it is hard to see how in this case there would be no problems associated with it.
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