Hi, I’m new to the forum, i was diagnosed with Parkinson’s at the end of 2018, however it was very mild, I was 56 at the time. I had continued until 3 weeks ago without any treatment, but I found my tremor on my right hand was getting worse under certain circumstances, such as cold weather or stressful situations. I am taking 2 Sinemet 3 times a day for the last week, but have not yet seen a significant difference is this normal. How long and what dose would normally work.
Hi JPen,
First of all, welcome to the forum! You’ll find our community of PWP, family, and carers to be a fount of useful knowledge and shared experience. We also would like you to be aware of the resources available on the website, as well as our free and confidential helpline at 0808 800 0303. As far as medications, we urge you to consult with your GP and Parkinson’s Nurse before making any changes, but we hope other members can help put your mind more at ease.
Best wishes,
Jason
Moderation Team
Thank you for the welcome and the advice
Hi, when I took my first dose of sinemet, it made a difference after only half an hour. It didn’t stop my left leg from shaking completely but it gave me hope. It can be frustrating to hear this, but we are all different, and what seems like a solution for one person doesn’t help someone else. It took me a few months to work out the best drugs, quantities and timings to find the best solution for me. Don’t be despondent, persevere with your Parkinsons nurse and you may get a better outcome. Good luck.
Thanks, I haven’t got a Parkinson nurse, I have just been seeing the hospital neurologist. How do I get one?
Hi still a newbie myself but some really helpful advice on this forum with practical ideas that you could try. It worked for me, i too am on sinemet slow release, what I didn’t know when I started the meds is how it works, how it is absorbed, i looked at my diet, I have since started meds kept a diary nothing major, as my meds increased a note of any side effects, new symptoms whether PD related or not, it’s easy to think that something new is ooh that must be PD but in fact it may not, like so many ladies out there of my age we have other blips to deal with when we get to a certain age! Sorry if over sharing, I make a conscious effort to drink a lot of water and have a desk job so set an alarm alongside my meds alarm to move, you could try this, it is also really helpful when you next see your consultant, I took mine with me, there was no way I was going to recall the last 6 months since I had seen him and he could pick up my my notes and ask me questions about what I had recorded, a really useful tip I found, good luck and hope you see some results, or at least an improvement in some of your symptoms, take care
Hi @jpen. Were you advised to take the sinemet at least an hour before or after any meal containing protein? I find this makes a massive difference to its effectiveness. Protein apparently affects the absorbing of the levodopa.
When I started on Sinemet I’d read people on the forum say that it had an immediate effect and was hoping for immediate miracles but that’s not how it was for me. It took a few weeks to notice any changes and the improvement continued for several months. I did also have several sessions with the parkinson’s nurse to adjust the dose and timing of the sinemet which also helped a lot.
I think finding a Parkinson’s nurse depends where you live. Here in West Essex we can self refer after a firm diagnosis which is what I did. My neurologist had said she would refer me but never got round to it!
Hope this helps
Clare
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Thank you
Hi, when I was put on sinemet, it took a couple of weeks before I noticed a real difference. Some important info about sinemet it is absorbed through the gut so if possible try and not get constipated. Also take on a empty tummy and don’t eat a heavy protein meal the same time, leave an hour after eating food or take half hour before food. Stress doesn’t help either.
It’s trial error but you should go 4 hours between doses, your GP should do s referral to your local community parkinsons nurse.
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Thank you for the info