hitting a wall with meds

Hi,

 I joined the forum today, My name is Rick, 50 yr. old, diagnosed 5 years ago. 
My first neurologist overmedicated me, started me on high doses of sinemet, then stalevo (the highest dose with pills the size of a marble). I changed docs, found a good one at Cleveland Clinic Florida. She put me on a low dose, 25/100 5 times daily. It worked well for 2 years, less side effects, but I hit a wall a few weeks back and am seeing her tomorrow to tweak or increase meds. I am often sore and stiff doing simple things. My walking is terrible unless I am 'on'. My right side is affected, but now my left arm & hand is losing mobility and dexterity. It is scary because I depend on it so much for everyday tasks.
I have tried Azilect, Comptan with Sinemet, Requip, Stalevo and nothing except the Sinemet (Carbidopa Levo) has any positive effect for me. I may have to go to the blue pills or take more of the yellow pills (25/100) I am on.

 I used to be able to predict it. Usually the pill took 40-50 minutes to kick in. The first left me effective for 90 minutes, the next couple 60 minutes and the last couple worked for 50-60 min. The off time was uncomfortable but tolerable.  Now, the first dose usually is okay, but the second/third/fourth/fifth dose sometimes takes 90 to 100 minutes to  trigger, and sometimes dont work at all. The off time is spent being very sore and rigid, torso in particular. 2-3 hours of 'on' time is excruciating. Is it just time to up the med dosage?

 Any advise, short of DBS, which is not out of the question? Thanks.

First of al Welcome to HW and the Parkinson's Forum, I had a similar experience, but my outcome was rare.  I was diagnosis withh early PD when I was about 48.  I had the classic tremor in my right hand, rigidity, loss of right arm swing, not able to walk a straight path for any length of time (I veered to the right), nystangmus, etc.  I was able to use sinemet and the the combination of sinemet and comptan for about 2 years.  During that time I started needing more and more sinemet and it took longer to kick in, as well as not lasting as long.  about 30 months into the disease the sinemet just stopped working for me.  After two second opinions at major teaching hospitals, I was finally diagnosed first with atypical parkinson's and then with MSA (multiple system atrophy). In no way am I saying this might be the path you are on.  There are many reasons that your PD meds may no be working.  I have 2 friends who maxed out on their sinemet by taking over 24 tablets a day.  Both choose to have DBS.  One was extremely successful the other had mixed success. Good luck and keep us posted.

I am new and just joined. I am interested in the best direction for therapy. My husband is a Vietnam vet and is just now getting his care at the VA, Have you had any experience with the care there??

RN

RN,

Welcome to HealingWell.Although I have no experience with the VA.I do have many years worth of experience with pd.Everyone experiences different rates of progression,different results with meds so the short of it is that there is no one way to treat this disease.Experiment with the coaching of your neurologist.If one med doesn,t work after a fair trial try another.Attitude,and knowledge are your two biggest weapons against this disease.Stay in touch with us,and I wish you,and your husband the best.Ed

it seems to me that you should w/mds advise up your sinemet to 150 or 200 I did that and it works well not perfect but much better