Hi. I take Madopar 100/25mg 3 times a day.
I have been on this medication for 6 months and it has not helped with slow moving stiffness and my tremors are getting worse.
I’m waiting for an NHS referral which can’t come soon enough.
Does anyone take any drugs that help with the tremors as this is the main thing that is affecting me.
I want to get off madapor if possible because it is also restricting me from working as I have a safety critical job. Any help would be appreciated. Chris. strong text
Morning Chris … I was diagnosed in June 2023. I was first put on Madopar which
did not work for me. I was then put on another drug which did not help. When this
Neurologist left I was put on Co-careldopa, also known as Sinemet, this did work
for me & I am still on it after a year.
Some drugs suit some people but not others we are all different.
Best of luck.
Steve2
1 Like
Thanks Steve.
I’m struggling to get an NHS appointment.
I was diagnosed privately then told I’d be seen on the NHS.
Do you have tremors? And has the medication helped them.
1 Like
Hello Chris … My symptoms are complicated. I have seen 3 neurologists privately in the past 3-6 months. I was having fairly severe sleep issues. RLS, nightmares & insomnia and resulting daily exhaustion. In hindsight this was probably a side effect of the Co-careldopa. On top of this I have gait freezing and problems with my balance. I have fallen over maybe 8 times in the past 6 months.
I do have an internal tremor & I shake violently when carrying a tray or cup of coffee in a Cafe.
My most recent private neurologist had stopped ALL my PARKINSON’s MEDICATION for two months & then examined me and said …
“On examination, he had normal facial expression, normal voice and normal in enunciation of speech. He took quite a long time to get out of the chair and was initially oddly bent at they hips bilaterally but gradually straightened up and as he walked. He appeared to have some old hesitancy of initiating gate
when starting to walk but it was not typically parkinsonian in appearance. He had an intermittent postural tremor of the right hand which looked organic and there was also an intention tremor mild intention tremor in the left hand particularly on approaching the nose. There was no cogwheeling or rigidity and no
bradykinesia or hypokinesia of fine finger movements. Waving was well performed as were other rapid alternating movements of the hands. Foot tapping was also normal. He appeared slightly unsteady on his feet, he had very good arm swing bilaterally, but his gait appeared oddly robotic”.
When I went back on the Parkinson’s drugs my condition improved.
Best wishes
Steve2
1 Like
Hello again Chris … It took me 3 years to get to see my first NHS neurologist. He was from Armenia and his speciality was Neuropathy not Parkinson’s. His English was not good. His advice and opinion was not good. However he did get me a prompt
Mri Brain scan, Mri Spine scan & datscan within a month or two.
My Parkinson’s Nurse however is experienced & excellent & prescribed the Co-careldopa.
Clearly if the Madopar gives you no improvement you should stop taking it after talking to your medical team.
I halved my Co-careldopa intake for a week & then stopped completely.
What about talking to the Neurologist you saw privately & saying you want to come off Madopar as it hasn’t worked. Maybe email his secretary.
Best wishes
Steve2
Thank you for explaining your situation, Chris. It sounds really frustrating to be dealing with worsening tremors, stiffness, and slow movements—especially when Madopar hasn’t helped after six months. Unfortunately, it sometimes takes trying different options to find what works best, as response to Parkinson’s medications can vary from person to person.
Madopar (levodopa/benserazide) is often the first choice for treating movement symptoms and tremors, but not everyone gets good relief. It’s also understandable to want an option that doesn’t get in the way of your work, especially if safety is a concern.
Other medication options for tremor and motor symptoms include:
- Dopamine agonists (like pramipexole or ropinirole): These act on dopamine receptors and can help with tremors and stiffness, sometimes used alone or with levodopa.
- MAO-B inhibitors (such as selegiline or rasagiline): These help boost and prolong your body’s dopamine, and can be added to levodopa or used alone in milder cases.
- Amantadine: This can help with tremors, slowness, and stiffness in some people.
- Anticholinergic medications: These can help with tremors, but are less commonly used due to possible side effects like confusion or memory problems, especially in older adults.
- Deep Brain Stimulation (DBS): If medications aren’t effective in controlling tremors, DBS surgery can be considered for certain cases.
Because some medications can have side effects or may not be suitable depending on your job, age, and general health, it’s important to review all options with a Parkinson’s specialist. They can help develop a plan tailored to your specific needs.
If you feel your symptoms are making work unsafe, it’s also a good idea to discuss this directly with your specialist as soon as possible, in case a quicker review or medication adjustment is needed. In the meantime, keeping a daily symptom diary could help your healthcare team find patterns or triggers that might influence your treatment.
You’re definitely not alone in facing these challenges. Reach out to your Parkinson’s nurse or specialist with your concerns—they’re there to help you find a more effective and manageable treatment plan as soon as possible
1 Like
Hi chris i take 80mg propranolol to reduce my tremor
Hi. Thanks for your reply.
I’m still waiting to see an nhs specialist and as a result I have not got a Parkinson’s nurse yet.
My gp suggested I was diagnosed privately to get some medication, so that’s what I did seven months ago.
An email from the neurology department sent to my gp suggested taking more madapor and if there was no change try taking sinemet. But what is a usual dose. Plus I have read I can take this with or without food. Chris.
Hi. Thanks for the reply my gp prescribed it 9 months ago and it had no effect. Cheers Chris
Chris the usual dose for Sinemet is 1 tablet a day for a week, then 1 tablet twice a day for a week, then 1 tablet three times a day for a week, then 2 tablets 3 times a day.
I took my tablets at 7am, 1 o clock & 7 o clock.
As I may have said I tried Madopar & it did not work at all for me. For me if a tablet is going to work I know early on.
If you have been on Madopar for 7 months & it has not worked then it is not going to work.
Best wishes
Steve2
1 Like
Hi Chris have you thought of trying the beach band ?
Cardio exercises may help by reducing the adrenaline.
Stress reduction like meditation may also calm the system down.
Is there a possibility of being referred to another area that is not overloaded.
Have a look at complementary therapies like photobimodulation,
Nicotine patch, and diet or intermittent fasting for brain health.
I have heard reports of ivermectin helping neurological conditions.
I find that YouTube and X are useful for research.
Hi Steve. What dose of sinemet are you on. I’m going to do a medication check with work to see if I’m able to carry out my job taking sinemet.
I’m not able to work taking madapor. Regards Chris.
Hello Chris … I currently take 2 Sinemet pills at 7am & 2 Sinemet pills at 1pm.
I do not take 2 pills at 7pm as it causes insomnia & other sleep issues.
This works really well for me. I also take 1 Rasagiline pill at 7am.
My first dose of Sinemet can vary depending on when I wake up.
Steve2
Hi Steve. What is your milligrams per tablet for sinemet ? Thanks
Sinemet 12.5mg / 50mg
Steve2