I was diagnosed with Parkinson’s early 2018. I started off with the neupro patch which did not seem to work. I was then prescribed Sinemet. Again, this does not seem to be working effectively. I have tremor in my hands and when I take Sinemet the tremor is amplified / multiplied and gets worse. My anxiety levels go through the roof. My dosage is one tablet three times a day. I have raised my issue many times with the specialist, and he says the dosage I am on is too low. He also wants to give me additional medication to compliment the Sinemet I am already taking. In 2014 I had a left nephrectomy, and my left side has been weak ever since. My case is not a straightforward run of the mill Parkinson’s case. I have other issues also. My worry is if the medication I’m taking is making me feel bad and also making my symptoms worse, increasing the dosage is not the way to go to me. I’ve written countless emails to the senior nurse and specialist, but they just don’t seem to listen. Any advice would be greatly appreciated
Tony.
Hi Tony2, i’m replying with my own personal experience, I started Sinemet 3 times a day and when reviewed with my consultant he wanted to add in another med as I really struggle of an afternoon. I decided against it, I had only been on the one med for 8 months (diagnosis Aug 20), what I did not actually understand until about three months into the meds is how this is absorbed. The time I take it and when to eat either before or after, drinking LOTS of water and this has made a difference. I keep a diary, nothing too in depth but notes - sleep pattern, mood, anxiety or stress and the triggers - I’m more aware of them now, diet, bowel habits this I found really useful so when I last met to discuss my meds I had reference to say well look this is how I’ve been over the last five months. Being able to share this at the appointment rather than relying on recall (not always the best and can never seem to get my point across, like you say they just don’t listen) gives them the prompt to ask me questions around any particular few days where symptoms may be worse than others, I felt it gave a clearer picture. I’ve now added my BP readings morning and evening as have had periods of dizziness, particularly standing from sitting, I will give them the readings and linked with my diary entries they have a good idea and a pattern. As with any medication for me it is weighing up the risk and the benefits and again it is having a clear understanding of how the meds work, for me it made a difference. Good luck! Take care
Hello. I was diagnosed in October 2020 although my only symptom appears to be a tremor in my right hand, which has become progressively more evident in the meantime.
The complication I have is that I have stage 2 Prostate cancer, which has spread to my bones and I am undergoing chemotherapy treatment at the moment.
At my last visit to my Parkinson’s nurse, we agreed to start on sinemet treatment but I wasn’t advised on the possible or likely side effects. Having read the possibilities, some of which I’ve already experienced through the chemotherapy, I am reluctant to start n the medication. So I’m looking for some idea of the most common side effects and how to manage the regime of taking the medication in association with eating, drinking and the other medications I’m already on alongside my chemo sessions.
Very interested to note that when to take Sinemet in relation to eating and drinking has made a difference. Any other feedback would be greatly welcomed.
Thanks for reading this far.
Hi AllanBC,
We just wanted to say hello and welcome to our forum community. Please have a look around and chime in on some of the other threads and get to know the lovely and supportive people here. We’d also like to point you to our website, where you can find a wealth of helpful information. We think this section on side effects would be a good place to start. Added to this, we have a free and confidential helpline staffed with advisers who are able to provide answers to a variety of questions and can point you toward resources in your area, among other things. The number is 0808 800 0303.
We hope this information can be of some assistance, and again, welcome.
Jason
Moderation Team