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Facts on PD treatment


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#1 christie

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Posted 05 April 2013 - 06:28 AM

Facts on drug treatment for Parkinson's disease
(topic open for debate-discussion)

Fact number 1: Patients with young onset disease are prone to developing early and severe dyskinesias and motor fluctuations induced by chronic treatment with levodopa.
Fact number 2: Levodopa remains the most effective and better tolerated drug for Parkinson's treatment. It's the only drug with proved efficacy in prolonging our life expectancy and significantly improving our quality of life (QOL)
Fact number 3: Many neurologists are hesitant to prescribe levodopa-especially early in the disease and to patients with YOPD- or try keeping the dose of levodopa as low as possible for as long as possible in order to avoid the emergence of dyskinesias and motor fluctuations.
Fact number 4: Dopamine agonists represent the most effective alternative to levodopa, either as monotherapy in early disease, or as an adjunct to levodopa allowing for administration of lower overall doses of levodopa
Fact number 5: Monotherapy with dopamine agonists seems to be the preferred initial treatment for patients under 60 years of age. The main reason for this is "levodopa phobia".
Fact number 6: Dopamine agonists, especially when given at high doses, may cause severe side effects, including not only the temporary symptoms of nausea, vomiting and postural hypotension but, most importantly, behavioral disorders (impulse control disorders, hallucinations...)
Fact number 7: Patients started on dopamine agonists (instead of levodopa) have a significantly lower incidence of MILD TO MODERATE NON DISABLING motor complications (as compared to patients started on levodopa). However, the duration of this benefit is only temporary, and does not seem to exceed the first 5 years of treatment. There appears to be no significant long-term advantage to starting treatment with a dopamine agonist as regards the development of SEVERE AND DISABLING dyskinesias
Fact number 8: Parkinson's is a chronic degenerative incurable disease. The initial choice of treatment-levodopa or dopamine agonists-has little-if any-effect on long-term prognosis. As Weiner and Reich commented on this: "Agonist or levodopa for Parkinson's disease? Ultimately it doesn't matter, neither is good enough"
http://www.ncbi.nlm....pubmed/18695156


Patients with PD should be active partners in disease management. Fully informed in order to make informed decisions and critical choices, depending on their particular needs.There's no "one-size-fits-all" treatment.

Let's keep updating this topic with evidence-based data on PD treatment, to help us all make the right decisions on our treatment.

Edited by christie, 05 April 2013 - 06:29 AM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#2 Luthersfaith

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Posted 05 April 2013 - 08:32 AM

Dopamine agonists, due to side effects, (in my opinion) suck. Helpful... yes, but they still suck.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#3 joyfulnoise

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Posted 05 April 2013 - 10:48 AM

Thanks for this info! Especially for YOPD take an active part in your treatment and find a Dr that will allow you to do this. It has great consequences on the type of treatment sometimes. With my husband I wish the trial and time on agonists would have been shorter, I have been trying to get him off of them for about a year. Even after mentioning compulsive behavoir to two neurologists and one movement disorder specialist, they all wanted to increase the agonist, we both said no way. The side effects kept getting worse, compulsive behavior, leg swelling.

When he finally decreased the agonist right away he said, "I feel less foggy", I felt like my funny loving husband was back! We really noticed the difference he was not so lethargic.

We are finally seeing the freezing decrease, but it was after we pushed to try sinemet, we had started stalevo last October. Insted of improving his motor symptoms kept getting worse. The last appointment the neurologist said we will see if this improves things by increasing the stalevo, but it maybe the best we get. It actually made the freezing worse. We had even called the movement order specialist in Chicago, they said exercise more.

i can honestly say if it were not for the words from Dr Okun I think we would of not kept pushing on to have my husband try sinemet. Finally after taking it every 4 hours 1.5 tabs he is walking a lot better, freezing as decreased and I saw him swing his arms for the first time in a long time.

Medications are great but always remember everyone reacts differently and have someone that lives with you watch and take note, and be sure to keep talking to the Ddr and try to adjust the meds because it can make a big difference!

#4 Sean

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Posted 05 April 2013 - 01:45 PM

Facts on drug treatment for Parkinson's disease
(topic open for debate-discussion)

Fact number 1: Patients with young onset disease are prone to developing early and severe dyskinesias and motor fluctuations induced by chronic treatment with levodopa.
Fact number 2: Levodopa remains the most effective and better tolerated drug for Parkinson's treatment. It's the only drug with proved efficacy in prolonging our life expectancy and significantly improving our quality of life (QOL)
Fact number 3: Many neurologists are hesitant to prescribe levodopa-especially early in the disease and to patients with YOPD- or try keeping the dose of levodopa as low as possible for as long as possible in order to avoid the emergence of dyskinesias and motor fluctuations.
Fact number 4: Dopamine agonists represent the most effective alternative to levodopa, either as monotherapy in early disease, or as an adjunct to levodopa allowing for administration of lower overall doses of levodopa
Fact number 5: Monotherapy with dopamine agonists seems to be the preferred initial treatment for patients under 60 years of age. The main reason for this is "levodopa phobia".
Fact number 6: Dopamine agonists, especially when given at high doses, may cause severe side effects, including not only the temporary symptoms of nausea, vomiting and postural hypotension but, most importantly, behavioral disorders (impulse control disorders, hallucinations...)
Fact number 7: Patients started on dopamine agonists (instead of levodopa) have a significantly lower incidence of MILD TO MODERATE NON DISABLING motor complications (as compared to patients started on levodopa). However, the duration of this benefit is only temporary, and does not seem to exceed the first 5 years of treatment. There appears to be no significant long-term advantage to starting treatment with a dopamine agonist as regards the development of SEVERE AND DISABLING dyskinesias
Fact number 8: Parkinson's is a chronic degenerative incurable disease. The initial choice of treatment-levodopa or dopamine agonists-has little-if any-effect on long-term prognosis. As Weiner and Reich commented on this: "Agonist or levodopa for Parkinson's disease? Ultimately it doesn't matter, neither is good enough"
http://www.ncbi.nlm....pubmed/18695156


Patients with PD should be active partners in disease management. Fully informed in order to make informed decisions and critical choices, depending on their particular needs.There's no "one-size-fits-all" treatment.

Let's keep updating this topic with evidence-based data on PD treatment, to help us all make the right decisions on our treatment.


Christie,
First of all, thank you for this important information. My first PD med was Mirapex and I experience very strong and negative side effects. Next I tried Stalevo with the same results. Both of these agonists made me extremely drowsy, nauseous, and incoherent, but also would cause me to perspire heavily...especially on my head! After seeing this, my MDS prescribed Sinemet, Comtan, Amantadine, and Azilect. I can't begin to tell you how much better I began to feel with this "cocktail" of meds. I've had zero side effects with any of these drugs and this combo really keeps my symptoms to a tolerable level so that I can live my life as close to "normal" as possible.
I know that the agonists work for many but not for me. Your advice to keep talking with your physician about pharma choices and availability of same that will work for you is so important.
Don't allow anyone to keep you from feeling your best!
Take care,
Sean

#5 AlanDAronson

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Posted 14 April 2013 - 12:44 PM

The best combination of medicine for PD is rest, exercise, and avoidance of stress. In term of exercise, you should spend some time with a physical therapist who has experience with movement disorders. Learn how to stretch every muscle in your body and do it several times a day. Proper posture is essential. If a family member sees you walking or sitting hunched-over, ask them to tell you. Walk as much as you can. Explain to your spouse that it is not necessary to park outside the front door of every business - it is better to walk a ways if you can.

My experience with dopamine agonists is that they are poison. The side effects.are not worth it. I developed a gambling compulsion and eventually suffered hallucinations. If you take mirapex, warn your family members to watch for unusual behaviors. If you develop these problems, tell someone right away as it will get worse. Carbidopa/levodopa is the safest and best therapy. Doctors don't like to give it too soon for fear that they will burn through the effective therapies too soon, but if I could repeat the past ten years I would not touch a single dopamine agonist.

#6 KimAgain

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Posted 14 April 2013 - 01:51 PM

Snowflakes all, I suppose! No two patients exactly alike, no two patients respond to treatment/meds exactly the same way. Find what works best for you, I say, and go with it!

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.


#7 CynthiaM

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Posted 15 April 2013 - 04:32 AM

Withdrawals from dopamine agonists are sheer torture.
Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.




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