Starting Med From Diagnosis


#1

Hi, I'm waiting for a DAT scan but the diagnosis is a formality, based on presentation and history.

My doctors said they wouldn't start treating me yet as I'm still relatively well. I've read about people starting certain meds other than Levodopa and possibly benefitting long term from it. 

Does anyone have strong feelings or knowledge about this?

Thanks, from the bottom of my uncoordinated feet. 

P. 


#2

In hindsight, which is of course a great thing, we would not have started medication straight away, especially NOT a dopamine agonist!! as symptoms were not causing problems in day to day life.Now, getting  rid of the dopamine agonist after 18 years is a B****R!!! Only you can decide, with the input and advice of all the professional help that you can draw upon, and who MAY provide the pros and cons.


#3

Thanks for your response. Why is getting rid of the agonist a bugger?


#4

Hi Hughes,

Only start on drugs if it is necessary, i.e. the symptoms are affecting your quality of life and when you start start on the lowest dose that gives you relief. After all there is no benefit otherwise, no proof of delaying or slowing down progression ( which is unpredictable and very individual) .  A lot of people have  tolerated Dopamine agonists well , but if there are problems,especially the OCD/ICD, then these can be very destructive and serious and patients have to be slowly weaned off them, as their  initial introduction to the drug was also a slow titration upwards. until effective dose was reached.. Best wishes, Kate


#5

Hi,

I was diagnosed in November and initially the consultant said the same ie no treatment as my symptoms are relatively mild but when i went back after the DAT scan, he put me on 10mg selegiline (he preferred something else i've forgotten the name of but can't get it on our local NHS). There may be some long term protective elements to it - it's not been confirmed but he said it wouldn't be worth waiting 10 yrs to find out whether i should have taken it 10 yrs ago (if you see what i mean)

Now I'm used to it, no obvious side effects and hand and arm are a bit less stiff but doesn't seem to mix well with alcohol which is a bit of a disaster

take care

j


#6

Hey Dufflecoat, was the other drug Rasagiline/Azilect? 

I've read mixed reviews of Selegiline alright. 

I'd love if there was something I could take now that might prolong the pre-levodopa period.