Hi, I was diagnosed with early onset in initially 2021 then confirmed! Via dat scan in 2022. I’ve been taking dopa levodopa, with rasagaline in the morning first dose and prolonged dopa levodopa at night to ease cramping. since 2022 it’s mostly worked well, giving me initially around five or more hours on time. Most recently I’ve noticed some wearing off. down to 4 hours and now im only getting around 3 hours on before I start to feel stiff and slow in my movement and a bit foggy in my head. What’s your experience and how did you change meds to help?.
Hello Neilrich65,
Thanks for reaching out and we’re sorry to hear this. Our friendly forum may be able to offer you some direct advice on this, but in the meantime we do have a piece on our website about this. You can find this here: Coping with 'on/off' changes | Parkinson's UK.
We would also recommend speaking to your GP/health specialist regarding this as they will be able to give you the best treatment plan for you.
All the best,
Parkinson’s UK Moderation Team
Hi NeilRich
I suspect that this is a common occurrence.
Any patterns eg related to time of day or proctor eating? What level of meds are you on? Any changes so far?
Hi Annie 2
I’m on 25/100 carbidopa levodopa 4 times daily at approx 4 hourly intervals , usually 6.30 am ISH , 11am, 3pm and 7pm ,and I take 1mg rasagaline in the morning with my first dose and prolonged release carbidopa levodopa 25/100 at 11pm. Generally I try to leave it an hour after or before I eat. I usually only take porridge with milk in the morning or bran flakes at 7.45 am , usually crackers with hummus and some salad at lunch at 12.30pm and a variety of veg or salad with meat or fish at tea time 5.30pm. I’m aware protein can be an issue , so I’m careful when I take high protein such as meat , fish. I’ve been reading that dairy can be an issue , but didn’t think semi skimmed milk was a problem in cereals or drinks such as coffee, which I do drink at least 4 times or more daily and I eat yoghurt often as a tea time dessert but not protein rich one, I’m wondering now if maybe it is that, despite leaving the hour before or after meals.
Thanks NeilRich - that’s v similar to myself - diagnosed at a similar time. I’ve played around timing of meds and think I was possibly not leaving enough time after food before taking the sinemet - usually an hour-ish . I do have tea with milk soon after but don’t feel that curbs the meds.
The other factor I think may be significant is vigorous exercise which sometimes seems to ‘drain’ the meds and other times to make them last longer.
So many factors and lack of objective measurement to gauge impact. I’ve tried with limited success to use a side by side keyboard tapping exercise to assess when the meds were kicking in.
Good luck and I look forward to hearing that you’ve cracked it!
Yes that’s my experience too with exercise and activity, gardening DIY etc, Sometimes totally drains me other times invigorates me. No rhyme or reason to it at all. I’ve been reading about dairy, effect of pesticides etc, scary stuff. So I’m going to try other non dairy milks and cut back on dairy products, who knows it might help. Last thing I want to do is increase meds , maybe only choice though, what I’m on now is regime from diagnosis 3 yrs ago, maybe it’s time , unsure how long other people have gone for , on initial dose, it’s so individual omg the possible side effects,
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Hi to all who are viewing this , can you please inform me how long was it after initial diagnosis and medication prescription that you needed to increase your dosage due to wearing off ? .
Will be interested to hear how you get on with non dairy milks. I dabbled in various ones but not keen on the flavour. Generally cut back slightly overall on dairy products. I think / hope that if you vary diet no one thing will have a huge impact.
Not everyone has side effects but I agree- scary stuff. It worries me too - specially as I’m light build and female. When I try to find more info it’s just - well everyone is different!
Something else I’ve read in various forums is that some people experiencing wearing off benefit from changing to prolonged effect dopa levodopa rather than normal ones I am prescribed one prolonged tab overnight and does seem to help over longer period, but haven’t tried these during day. I plan to phone Parkinson’s nurse and gain her opinion.
I’m 2 and a half years post diagnosis; started meds after 6 months. Prescription 50/100 sinemet one tablet 3 x a day- same from start. Had a difficult last mt with my neurologist who wanted to increase dose. I refused as it really didn’t seem necessary. He couldn’t give me a clear rationale for increasing dose.
Are you not prescribed something to boost effect like rasagaline ?. But you are on different dose to me, maybe makes a difference re prescription of add ons.
No nothing else
Sorry error- my sinemet is 25/100 three times a day. Good idea to ring the PD nurse
I’ve read (fairly sure it was somewhere on the forum) that there is a ‘honeymoon’ period with PD after which medication needs tweeking (which usually means increasing!)
In my case I was on 100mg Madopar three times a day and when ‘wearing off’ started to happen to me after about 4 years my Parkinson’s nurse increased it to 150mg 4 times a day. A year later on, I’m noticing ‘wearing off’ again so I may be due another increase.
I believe this is due to PD worsening rather that the body getting used to the dosage and needing more…
Hi Steptoe , thanks for that, did you try altering diet or times you take meds before you increased, or did nurse, doctor feel it was just time to increase and those changes wouldn’t help.
Hi neilrich 65, my hwp definately gets more on time if he watches diet, pill time’s and obviously avoids constipation. He saves most protien consumption till later as well. It works for him, he too koced to alternative milks. We are from the try anything camp