[Jalto2]

I am 62 years old. I was diagnosed with Parkinson's Disease in February 2013. The only symptoms I have currently are tremors of my left hand and some left arm stiffness. Thankfully, I am right hand dominant. I started Sinemet to confirm the diagnosis, but it did not stop or decrease the symptoms. I had a daTscan in October 2013 that confirmed that I do have Parkinson's Disease. My MDS prescribed Mirapex 0.25mg 1/2 tablet 4 times per day to start and continue the Sinemet 25/100mg 1 tablet 4 times per day. After a week of the Mirapex I could tell a little bit of difference in the tremor. However, the side effects are intolerable and include severe headache, racing thoughts, emotionally labile, crying, nausea. I work full time, and of course cannot have these issues. I am currently not taking any Mirapex and feel much better. Here is my question:
If I stop taking all medications, including the Sinemet, and just live with my PD symptoms until they really interfere with my daily function, will my PD progress more rapidly?
In other words, does taking PD drugs slow the progression of PD?
Thanks.

[soccertese]

there is no prescription drug that the FDA recognizes as slowing down disease progression. there is one clinical trial that concluded AZILECT might slow down progression slightly. but the FDA has not approved AZILECT for that purpose.

excercise might slow progression, there is some research but nothing proven yet in humans. that might influence whether you take meds sooner than later if they help you exercise.

i find it odd you didn't respond to sinemet at all yet are confirmed as having PD

[johnt]

The question is a good one.

Soccertese is correct that the FDA doesn't recognize any drug as slowing the progression of PD, but it is worth making the point that that is different from saying that no drugs or other types of therapy actually do slow progression in some people.

For FDA recognition to be awarded stringent statistical claims need to be justified by the data. Trials to collect this data cost a lot, and have a good chance of ending in commercial failure, in the sense of not winning FDA approval. This could happen even though the data is slightly positive across the cohort on average or strongly positive for some people. (There are probably many types of PD.)

An observation that I make is that some people progress more slowly than others. This could be because of the nature of their specific form of the disease or what they do to try to slow its progression or both.

So, my attitude is that it is worth each one of us looking for what works for us individually.

John

[Tupelo3]

I have to agree with soccertese on his advice. You're basically at the same point as I was a year ago. I am almost two year since dx and still have the same basic symptoms of left hand tremor and left arm stiffness. I elected to start Azilect immediately and still take 1mg/day. I doubt I am getting much symptom relief, although as I said, symptoms are relatively mild anyway. However, as I have had no side effects from the Azilect, I take it on the hope that it has some progression slowing impact. Besides the study soccertese mentioned, there are several others now ongoing. Also, there is some anecdotal evidence of progression modification with the drug. You'll probably find many on this board who disagree with my opinion regarding this, but that's going to be true with almost anything you will be trying over the years with PD. It's a very individually specific disease, as johnt stated. I think its worth a conversation with your doctor.

One thing you will not find much disagreement with on this board, or anywhere else, is what soccertese said about exercise. You should try to get a good routine going with different exercises at least 3 times a week, if not more. Bike, dance, Tai Chi, walking, running, stretching, etc. Whether or not it slows progression is still to be determined. However, it will definitely help you deal with the symptoms, IMHO.

Finally, you may not have seen any response to Sinemet if your main symptom is just tremor and mild arm stiffness. Sinemet doesn't always work well for tremor control.

[Canna]

Considering your relatively mild symptoms and young age, I am surprised your MDS would put you on Sinemet and Mirapex so quickly. Seems like bringing out the big guns at a very early stage. While I was having very mild symptoms as you are, I was only on Azilect. When symptoms started to interfere more with doing household tasks and motivation to exercise, I started taking Amantadine. (I could be on Neupro, Mirapex, etc. but I am already a bit compulsive about my computer use. From the literature and also reports from my support group, I know that these drugs can exacerbate compulsive tendencies.) I think the idea is to reserve starting on Sinemet later in order to postpone the eventual side effects.

[Jalto2]

Thanks for your replies. I have left a message for the MDS asking how to wean the Sinemet. He also pushed exercise as a very important part of fighting PD progression. I forgot to mention that my father also had PD. However, he wasn't diagnosed until his early 80s. The MDS says that increases my chance of having PD by over 50%. Frankly, I was suprised the Sinemet did't help either.

[Nan Cyclist]

I don't know of any drugs that actually slow the progression of Parkinson's disease. My own experience is that cycling at high cadence, 80-90 RPM, for an hour three times a week has certainly changed the course of my disease. You can see the thread on Pedaling for Parkinson's for more information.

[Aunt Bean]

You might do some research on fermented papaya...if you do not have a latex allergy, it can help PD symptoms without adding l-dopa to your system. Also, if it is inherited PD, you may respond to fava beans . Have a G6pd blood test done to make sure you don't have favism first (your doctor can order it) Favas can help so much and they are not drugs that your body doesn't know what to do with...just nourishing food that God has blessed us with.