So my husband finally got his medication, started two days ago. Felt ‘not with it’ after first two tablets (lunch and dinner - hour before eating), woke the following morning and his walking was sooo much better, he felt ‘normal ’ an hour after morning tablet…. For about 3 hours:(
Subsequent doses have made not difference (he’s had 3 since then) and he’s shuffling and lurching forward as he has been the last few weeks.
He’s only in a low dose (62.5) and upping after two weeks, but I just wondered if anyone could tell us how long it takes to work? Strange how it helped after one dose but not since. I fully realise it’s very early days and we are being impatient, I know this is a long term thing, it just seems to be all we talk about at the moment, it’s so all-consuming
Hello again Becks … I have tried two different Parkinson’s drugs. Madopar & Ropinirole. The Madopar I took for 6 days [6 x 62.5] & got a poor reaction so I was told to stop. The Ropinirole I took 3 pills a day for 7 days. Then I took 6 pills a day for 3 days. I had no side effects at all but was told to stop by my Neurologist who said if it was going to work I would know.
So I stopped & strangely having stopped I had a brilliant night’s sleep & a feeling of Euphoria the following day. So clearly my brain was reacting to the drug & probably didn’t like it.
So if your husband had a positive reaction to the first tablet it might be that a bigger dose will help him. So a very good sign I think. It is just about getting the dose right.
As you know they slowly increase the dose as his body gets used to it.
With me the proposed dose was 3 pills for 7 days. Then 6 pills for the next 7 days & then 9 pills a day for 7 days. Then depending on my tolerance for the pill it might go to even higher doses.
Why not keep a daily diary on how he is doing with the drug? Good days, Bad days etc.
When taking these tablets they have a four window in which we call ON & Off so you take tablets or tablet they say it takes half an hour to come On an starts working for 3hrs then last half hour to come Off so saying you take 8am you should be then taking another at 12pm so you are never Off you can feel yourself when good and bad should make a diary of what times on & off then your pd nurse will advise you when to take and how much try to get this as good as theÿ can its hard to get right so be patient. There are alot more drugs these are add ons like slow release to help you can discuss this with your pd nurse. Hope this helps
So he’s 8 days in and our gp agreed he can double his dose a week early, as they’ve had barely any effect in the last 7 days.
Yesterday he started taking 25/100, 3 times a day. Still no difference.
I keep hearing that people notice an immediate improvement (his issue is walking/shuffling, freezing), and as you say, can take half an hour or so to kick in… is this after you’ve been taking them for a couple of weeks, or should be be feeling the effects by now (3 x 12.5/50 for 7 days, and double dose last 24 hours)?
We have the first appt with the consultant since diagnosis a few weeks back, mid October, I’m so hoping there’s an improvement soon.
Does your husband do any exercise at all ,exercise is really important i go to my local leisure centre every day swimming exercise in pool, sauna and steam room exercise in water is great really helps
Yes, he’s been exercising every day for the last few weeks, Peloton every other day and weight/core training in between.
Read so much about the importance of this and eating well, has to be done!
