Hi fellow Parkies
I have an appointment with my consultant in 3 weeks time, and will obviously take his advise, but in the meantime would appreciate any thoughts or comments based on experience.
I was diagnosed with PD in November and put on Seminet 25/100mg 3 time daily. Before diagnosis my tremors were so bad I was struggling to do anything - wash, dress, eat etc - and also finding it hard to walk any distance or write… not in a good place. Seminet has effectively given me my life back - it totally controls my symptoms for about 4 hours. As I only take it 3 times a day (roughly 7am, midday and 5 pm) I currently have about an hour before the midday and 5pm doses where I feel ‘off’. My tremor is not so bad that I can’t do things - but it doesn’t feel good. I manage to live my life pretty normally by either doing things (like shopping or dog walking) in the good periods and schedule in rest time (reading, watching TV etc) for the ‘off’ times - or adjusting my tablet timings slightly if I have things I can’t change the time of. ( I recently went on holiday and arranged it so I took my tablets about half an hour before getting to the airport ). The point I’m trying to get to is that although I manage o.k on 3 tablets a day I feel that if I took 4 a day (7am, 11am, 3pm and 7pm) I would pretty much be able to do what I wanted to at any time.
I know, however, that long term Sinemet use causes it’s own problems - so not sure if I am better off staying on as low a dose as possible for as long as possible - or if in the scheme of things it doesn’t make much difference in that respect if it is 3 or 4 a day.
As I said, any thoughts or comments appreciated.
A valid question Shir and not an easy one to answer because like many things about Parkinson’s it comes down to what feels right for you, Many Parkinson’s drugs potentially come with complications from long term use which is why research into better medication treatments is so important. However at the moment we have to work with what we’ve got. For me - and I strongly stress it is only my opinion - the key thing is whilst I of course want to take the least amount of medication possible if affects my quality of life now then the increase is worth it because this time won’t come again. Maybe I will have problems further down the line but equally I may not. I am facing an unknown future so I could hedge my bets but why? I have Parkinson’s but to borrow the classic saying I could be run over by a bus tomorrow so why deny myself a good quality of life now. Anyway there could be a breakthrough in medication treatment and long term use becomes less of an issue in the future. For me my unknown future will be what it will be and I will deal with that if and when it happens. That is what suits me, You have to trust your judgement and do what’s right for you.
I wish you well.
Tot
Hi,
we were having the same question with my dad. He was taking 2 sinimets 4 times a day. It used to last him 4 hours till his next dose. Now he started experiencing OFFs that lasted around an hour. He is a busy working man 76 years old and didnt enjoy resting every few hours. We had an appointment with his neurologist who said we should increase 8 sinimets to 10. basicallly every 3 hours to take 2. Thats the first time my dad said NO. He said he is not letting the medication take over his life. At first he said he will just live with these OFFs rather than taking medicaiton, but it was really having an affect on his moods.
Until 2 weeks ago my dads friend newly diagnosed with parkinson, mentioned that he couldtn tolerate the sinimet so he is taking now mucuna (natural l dopa). He said he is back to himself and forgets he has parkinsons sometimes. Ok he is still in the honey moon phase so that makes sense. Anyway, he told my dad to take one instead of one of the sinimet dose.
Boy did we get a surprise. One mucuna lasted him 4 hours and no OFFS. he was full of energy. Over the last 2 weeks he has exchanged one sinimet to one mucuna by each dose. Its a total gamechanger. We are still struggling with dosages but id love to spread the word to whoever I can help. we bought it by british supplements.
Hi Gila,
Thanks for sharing your dad’s experience with using BS Mucuna.
Are you able to explain how your dad incorporate the Mucuna with his Sinemet? I bought the British Supplement 2 a day Mucuna to try use with his Madopar for my husband He is currently on 50/25mg 4 times.
I just wanted to chime in here as I’ve noticed that you want to increase your dosage of Sinemet. Please ensure you speak to your GP about this before you make any attempts to increase your medication as this could be more harmful to your health.
If you have any questions or need further support, please give our helpline team a call on 0808 800 0303.
Don’t worry - would never just increase dose - was just trying to get my head around how i felt about it before talking to my consultant in a couple of weeks time - will go by his advise.
