I was diagnosed with Parkinson’s in June 2022, and prescribed with madopar tablets three times a day.
I don’t think that I have ever felt better after taking them, and have recently had the dose increased.
However, the symptoms have got worse not better, albeit that I have only taken the increased for a week.
Should my symptoms be getting better, as I am sure that I am worse than before I was diagnosed?
I guess that depends on your symptoms. The increase might make side effects worse but shouldn’t make the slowness and stiffness worse. Probably the best advice, as always, is to talk to your Neurologist or PD nurse.
Definitely speak to your PD nurse. They are on the ball and very proactive about getting things sorted. N
Good morning Spurs61. I’m guessing you are 61/62 years old & that you aren’t a fan of the gunners. I think we would like more information please.
What are your symptoms?
Why did they think you have Parkinson’s?
Have they said which of the many Parkinson’s you have?
I assume you saw a Neurologist for this diagnosis?
Is the Neurologist an expert in Parkinson’s?
Did you choose your Neurologist? NHS? UK based?
Have you had your diagnosis confirmed by a DATscan?
Have you had an MRI brain scan?
Do you have any other significant health issues?
You also don’t say whether you were gradually put on 3 tablets a day or whether it was from day 1.
Your worsening symptoms may be down to your other medications not getting on with the Madopar. Needs checking.
No doubt your Neurologist will slowly stop your Madopar [2 pills for a week. then
1 pill for a further week] & then try you on another drug.
I am 69 … I had a positive DATscan & a negative MRI brain scan.
I first saw my NHS Neurologist [NHS] about 6 months ago. He did the usual tests & said I had signs of Parkinson’s, which he said in a letter to me & my GP were Atypical Parkinson’s & then in brackets [PSP]. He said that he was arranging 2 brain scans to confirm this. So I had these scans 6 weeks later & went back to see him.
He confirmed that I had Atypical Parkinson’s [PSP] & said he would like to see me in
3 months time. He said that Atypical Parkinson’s did not usually respond to Parkinson’s medication but he would prescribe Madopar if I wanted to see if it helped. He also said Parkinson’s was a progressive disease & my symptoms were mild & I should come back when my symptoms were worse. Then he would me more clear on which Parkinson’s I had.
So I left with no prescription & very confused. I got other opinions which suggested
I should be taking medication so I wrote to him & started taking Madopar. I took
this pill for only 7 days & got a negative reaction to it so I was told to stop. I was then put on Ropinirole for 10 days which did nothing much good or bad & I was told to stop the Ropinirole. So I am now on no medication for my Parkinson’s.
These past 10 days my symptoms have been getting considerably worse & I ended up in hospital for a couple of days last week & can now hardly walk. This may
help my Neurologist with his diagnosis & I have written to him.
Treating Parkinson’s is a lot of guesswork & trial & error. They treat the symptoms rather than cure the disease.
Hope the above helps.
Best wishes
Steve2
As others will say, everybody’s Parkinson’s is different,
I was diagnosed about 6 weeks ago and immediately put on Madopar (12.5/50mg 3x daily, to increase to 25/100mg 3x daily after 4 weeks). After about ten days I started to notice slight benefits: it’s now about ten days since my dose was increased and I can see real benefits.
I’ve had a DaT scan, but don’t see my specialist and get the results for another three weeks.
But as I say, everyone is different and I’m just grateful that my first medication seems to work so well. I hope you find something that works for you.