Coming off my PD drugs
 

Hi everyone, I have just joined this forum, I live in New Zealand and have some questions I hope you can help me with. I have been diagnosed now for 10 years and back then, the neurologist told me I would be disabled in 10 years, well I am not, and I lead a normal life. I am on drugs of course, ropinerole 4mg x 3 times a day, sinemet 100mg/25 x 3 times a day and entacapone 200mg x 3 times a day, reasonably low doses. Have been on sinemet for 6 years. I am thinking now I could be misdiagnosed? or have a mild case of PD? At my last visit to my neurologist, I asked him about coming off my drugs and he thought I could try if I wanted to. But, I need more information and support to do this!!

So, I would like to know if there is anyone out there who has come off all their PD drugs and how they did it. Has anyone else got a mild case of PD? or does anyone think they have been misdiagnosed??

It is actually quite scary, the thought of coming of drugs I seem to have been relying on for years. But, do I come off them or stay on them???

Any help or suggestions on this would be great, thank you.

Janette

i find it strange your neuro didn't give you a plan, sounds like your're a little desperate? of course would be great if you didn't have pd.

anyway, i'm not an expert but the general advice is go very slow when you titrate down, especially with agonists. the drugs likely change the sensitivity and number of dopamine receptors on your neurons and i imagine your neurons don't adjust quickly to lower drug levels.

here's a start
http://forum.parkinson.org/index.php...met#entry64970

so you aren't progressing? how long have you been on each drug? no ON/OFF? how are you in the morning when most of the l-dopa is out of your blood? if you really aren't progressing you have enough healthy neurons to store and protect the extra l-dopa(dopamine) you are taking so you might not feel too bad in the morning. i found my symptoms reduced for a short time upon waking until maybe the 7th year, i assume a dopamine build up from my own neurons.

That Dr should NOT have stated any set time line, that is ridiculous..
I would not go off all rx without a plan and maybe only 1 at a time.
BUT-
I think I would find a new DR that is more up to date in PD care & also get a reassessment.

Hi Janette

I agree entirely with the slowest possible/one at a time regime. I would also add be aware it takes months to settle and you could have a rough time. The dilemma, as with all adjustments, is how long to stick at it before deciding yes/no.
Would you,if you don't mind, explain the circumstances that lead to your diagnosis ? E.g. in my case it was years of chronic stress..
I do wish you well and understand both your reasons and concerns.


Nigel

Issi 8,
What were your main, or most concerning symptoms at time of dx?
Do you feel the Dr did a complete work up?

Hi Janette,
Yes after I had DBS I stopped Sinemet completely for the first yr or so by titrating it down slowly when previously my daily dosage was 1,200 mg/ day.
I did stop the agonist abruptly (new neuro recommended cessation plus I was hospitalised at that time) and I don't recall any problem associated with the cessation of it.
I'd say asking your neuro and if he thinks going down maybe from 3 to 2 per day is worth a try for a week then 2 to 1 then 1 to none?
There isn't a clear way of getting a diagnosis of PD yet.
The closest to it is a Sinemet challenge test where if you respond positively to a small dose of it then most likely you do have PD.
I'd be interested to know your outcome.
I know a lady who lives near me and was supposedly young onset and diagnosed wrongly with PD and took Sinemet for approx. 10 yrs before stopping it.
The fact that you feel there's been little if any progression is good either way!
Best wishes.

Hi Made it up,

Do you know what explanation was given for the misdiagnosed lady's symptoms ? I'v come across complete misdiagnosis (ie not Parkinson's plus syndromes) before. Given the complex nature of PD and lack of definitive objective test its quite understandable but Im always intrigued as to what else can present parkinsonian symptoms sufficent to cause such a mistake.
I should explain that my current interest is stress/serotonin induced dopamine delivery issues ie there's enough dopamine but it does'nt get to where it is needed in sufficient quantity. Cases like the one you describe may add a piece to the puzzle.

Nigel

My neurologist did give me a basic plan, which was to stop my evening dose of sinemet to start and see how I go. I am doing my homework on this and have talked to the PD nurse, a pharmacist who specialises in PD drugs. I am not desperate by any means, but I have questions like "Why am I not progressing"? So, wouldn't you start to question diagnoses???

Hi Nigel, Thank you for your reply. I am learning that it will be a slow process, coming off my drugs, if and when I decide to do it. Yes, there will be the question of deciding to stick to coming off or going back on if I have problems.

Circumstances that lead to my diagnosis were years of a very high level of stress with my ex husband, who was narcissistic and bipolar. I was diagnosed with early onset PD at the age of 47, 3 months after I kicked my ex husband out! My symptoms at that time were a tremor in my legs, no upper body tremor. As there is no blood test or other test to confirm a diagnosis, the neuro asked me to walk down the hall way and said I have a PD gate. That was my diagnosis! So, now 10 years on, my PD has not progressed in the way others have. So that's where my question of "Do I come off my drugs"? I will have to do a great deal more research on this, I can see. Thank you for your support. Janette

Hi again Nigel, my neurologist is testing my blood for Dopa Responsive dystonia or Segawa syndrome, although I don't believe I have that and there is not a great deal of info on the net on DRD. Will keep you posted on the test results which maybe 2 months away as my blood had to be sent overseas for diagnoses.