Hello fellow travellers on the PD Express ! I’d appreciate your views on my nightly experiences,…plus my diversion into more general thoughts…l was wondering if I am alone in my symptoms. I am in the current pattern of being in an Off state at time of hitting the pillow . My last Sinemet plus tablets having been taken some 3 hours or so before I fall asleep. I put on a 4mg patch of Rotigatine/ Neupro at that time.Sleep comes to me within seconds, but I awaken after 3 hrs. When I wake up, I am clear headed, but totally switched off still. Dystonia is evident, and it’s not uncommon for me to make twisting movements in bed…I see no evidence of benefitting from the patch that I’ve put on, and my movements are very lugubrious. I may take up to two dissolved Madopar, and read for an hour, and find myself wondering just how good should I be feeling, if the Neupro patch was working…Should I feel as fresh and good as if I was perfectly dosed up with Sinemet. ?.. Additionally, can any one tell me why clinicians do not prescribe just Sinemet plus for both day and night(Sinemet CR)…it seems to me to be the one thing that truely works. According to the Author, Dr Ahlskog, people do not become tolerant of Levadopa, reducing its effectiveness… He says that Ones limited volume of Levidopa ( in a pill) just has a bigger job to do, as disease spreads within us…so why are we not advised to swallow more and more Sinemet tablets , both in frequency and concentration ?..perhaps, e.g. as frequently as every 2 hours, ensuring thus that we always remain switched on ? Instead, MAOB inhibitors are thrown into the mix…and I find the efficacy of Rasagaline to be absolutely negligible…All replies and conspiracy theories welcome. Yes, I know there are many professional papers and nurses keen to discuss, but I thought I would put this out to the general public, too
Good question, I also take Sinemet Plus to get to sleep.
I only take sinemet 62.5 mg 7 x daily and a sinemet CR at night. Have been doing this for many years and works pretty well. At doctor’s requests I have dabbled with the other drugs you mentioned, but felt they weren’t beneficial enough to keep taking/using. So my original regime is what I still stick to nearly 30 years on.
I believe I have discovered why ever increasing volumes of Levodopa consumption is frowned on. Despite what Dr J.Eric Ahlskog supports in his book, a multitude of other publications point to the link that many have made between development of Dyskinesias and extended treatment through prescribed Levodopa .It slightly surprises me, since , whilst everyone is put on Levodopa, and NOT everyone gets Dyskinesias, why is the link communicated between the two…? .after all, Parkinson’s patients also can develop Dystonias and Dementia, but I don’t hear anyone flag the excess absorption of Levodopa as being a causal driver in the development of them ?
Thus the reason we all get prescribed agonists, COMT inhibitors, Etc is to try not to exceed ~800mg/ day of Levodopa consumption.
I’ve not seen any smoking gun that convinces me that there is anything other than coincidence that correlates dyskinesias and Levodopa…? Any one have any thoughts, since there has to be some irrefutable science somewhere?
Hi William, never really had any thoughts about this, I have just taken my meds like a good little girl since being DX 10/11 years ago. My regime is Mornings - 18mg Ropinirole XL slow release & 25/100 Sinimet Plus, Lunchtime 25/100 Sinimet Plus, Tea-time 25/100 Sinimet Plus, Evening Rasagiline 1mg & Half Sinimet CR 25/100…
As I say I just take them regardless and don’t think any more about them, all I know is I have to take them for Parkinsons - sheffy (Sheila)
Thanks Sheffy. You have done well, or simply been fortunate…seeing how you are not taking as many pills as I seem to need, and were diagnosed 4 yrs before me…
Can’t believe that you are on more parky meds than me, besides my parky meds I also takes blood pressure tabs, water tabs,and Clopidogrel to thin blood, and Codiene/Paracetamol… Be interested in what medication you are taking??
Yes , Sheffy… it’s not hugely different from yours I also have a dopamine agonist namely rotigotine but as a (24hr)patch. In the day I take Rasagiline. I need the same Sinamet concentration as you but I need it every 3 hrs of a 16hr day. And in emergency ( when I’ve experienced any stress) I take a madopar:smirk: