I was diagnosed with Parkinson’s in 2016 after developing a significant tremor in my Right hand and forearm accompanied by awful cramping. Eight years later my symptoms remain the same except the pain and cramping pretty much stopped after I started a regimen of Sinemet which increased gradually and I, like many others am now taking a cocktail of tablets everyday when my predominant symptom remains tremoring in my right hand and arm only which escalates quite vigorously when I am stressed.
I find lately that I have been forgetting to take my meds and to be honest have not felt any different. I do try to keep to the correct schedule but I am now taking four Sinemet Plus tablets a day along with Rasagiline, and Pramipexole; and I can’t help thinking that if I am not noticing any change in my wellbeing when I have missed doses then I am perhaps taking too much.
I plan to talk to my lovely Parkinson’s Nurse about this when I see her next and am prepared for a stern talking to about taking my meds as prescribed.
Has anyone else experienced this?
Might be worth mentioning I also take Atorvastatin, Thyroxine and Amytriptilene.
I look forward to hearing back from you
Kate
I’m new to taking medication was diagnosed with PD in November am currently taking sinimet.
Can I ask if your symptoms have remained the same why have the doctors increased your medication + meds you are on?
As would think it’s in everyone’s interest to keep meds to a minimum.
I’ve spoken with a few people who have had PD for many years, who suggested trying to keep medication to a minimum to exercise and eat well. as the effectiveness of the meds lessons over time.
Good afternoon Kate. I am on 2 Sinemet pills 3 times a day. I do vary the times I take my morning & evening pills due to getting up late or forgetting. My midday Sinemet
I sometimes forget or take it later. I suppose we build up a reserve of dopamine in our brains. I’m sure we’d notice if we stopped altogether. I also take Amitriptyline for neuropathy which also helps my arthritic pain, their may be crossover Parkinson’s benefits as well.
Best wishes
Steve2
I think benefits
Afternoon JD2024 … I have just had Rasagiline added to my Parkinson’s medication.
I do not know why this was added or if I have benefitted from it. I think we have to trust the experts. It may be that our symptoms would get worse if the medication was not increased.
Best wishes
Steve2
Thanks Steve2, I probably ask too many questions as I do want to understand what to expect from meds they are giving me (good and bad) and the reasons why they are putting me on them.
Since being started on Sinimet they told me to take 1 X tablet 3 time a day building up to 2 X tablets 3 times a day but only if the meds were not working.
Have found taking 2 tablets in the morning and then 1 before lunch and 1 before dinner seems to work.
I’m meeting the neurologist next week to see how I’m getting on will see what he says then.
The bit that must be very difficult to assess is how the neurologist and pd nurse can assess how you are vs say a year before in 20 mins + they won’t see the output from the change in meds for a long time (ie next appointment) which could be 6 months to a year) Must be very difficult
Thanks
Afternoon JD … You raise a very good point. What I would suggest you do is to keep a health daily diary. This way you can monitor how the drugs are helping / hindering. Also note which meds you are on & what dose.
A few days ago I read a letter from a consultant in which he notes that I was walking 10 miles a day 2 years ago when not playing golf. NOW I doubt I could walk 100 yards & I’ve had to give up golf.
Best wishes
Steve2
Hi Steve2
Thanks for response, I saw on one of your other posts about marking how you feel each day, thought that was a good idea so have been doing that for the last few weeks to try and keep track on how I’m doing / feeling. Also tracking what meds I’ve taken each day + what exercise I did.
Sorry to hear how you’ve been impacted in the last few years, hope things stabilize / improve if possible.
Hello JD … Glad you think health record keeping is a good idea. It is surprising how much we forget about how long we have been taking medication & how we are feeling.
It is dangerous for us to under or over exaggerate our symptoms & get over or under medicated.
I am surprised that I have a good couple of weeks & then a bad couple of weeks.
I am amazed how much Clonazepam has helped me sleep [started it a couple of weeks ago]. Sinemet is known to cause quite severe sleep issues with some people.
Today has been a good day as I slept well last night.
Best wishes
Steve2
Hi J NEW-- Parkinson’s UK do a booklet about all meds we take. When you see your PD nurse she puts your personal drugs together for you. As one drug say 1A works with 1B but will not work with !C just example, I have found there booklet very helpful.