Hello everyone, 1st a quick introduction, I am 41 and was diagnosed back in May.
I was put on 12.5/50mg 3 times a day for the 1st 6 weeks with no side effects and some modest improvement. I have been on 25/100mg 3 times a day for 5 weeks now and am getting side effects that are most prominent after my 3rd dose, but sometimes after my 2nd dose but not as severe.
The side effects are head ache, fatigue, mild dizzyness and heat intolerance that last an hour and peak about an hour after dose, this is much worse when being a passenger in a car.
I’ve found the new dose to loosen my legs a bit, but my Dystonia returns with minutes of walking. So to get these side effects without resolving my walking issues is frustrating.
I have my 1st appointment with the PD nurse on Friday, so wanted your personal opinions on whether I should power through, or look to alternative therapies like maybe the Rotigotine patch etc.
Hi Dilly .. I was on Co-careldopa .. I am 72 & diagnosed about 3 years ago. If the lower dose benefits you & has no downside why not go back to that dose. This is a trial & error game, no one size fits all. Suggest this to your Parkinson nurse & see what he or she says. We all react differently to our medication. Best of luck.
As well as Co-careldopa I was on Rasagiline daily. You need to talk to the nurse & tell her what you have told me. I would suggest you make daily notes on how you feel etc.
You can also take your medication at different times. Your nurse may suggest an alternative medication, as I said it is trial & error.
I was diagnosed when I was 41. That was 25 years ago and I am still taking Sinemet along with Pramipexole although the dosages have been changed several times. My main problem is dystonia in my foot and ankle on the left side only. My toes curl painfully and my ankle twists inwards and is completely stiff.
One of the many problems with PD is that it can be so unpredictable. Some days I am able to get on with my life and on others I simply cant function. Add to this the effect that any form of stress has on my symptoms and life can be challenging.
Some days my meds work well and on others they just dont . There are, however, a few things that dont change. Sinemet helps with the general stiffness and cramping but it causes dyskinesia.. To avoid this I take a smaller dose in the late afternoon but this means I am in the “off” state from about 7pm owards. I therefore have to decide on a daily basis whether to risk taking my last dose or put up with the consequences of missing it.
The point I am trying to make is that everybody is different and the only person who knows how you really feel is you. PD follows no set rules. You may find that a particular drug helps but has intolerable side effects, like Dyskinesia and constipation which can have a dramatic effect. You will need to experiment with different drug combinations to see what suits you. This takes time and patience but is well worthwhile if you get it right.
Hope you had a good appoitnment with your PD nurse.