I am on day 5 of starting Madopar 12.5/50 and only taking one a day for the first week, 2 per day week 2, 3 per day week 3 and onwards. I am not feeling any improvement yet but maybe its too early and am actually feeling worse right now. Just one per day feels like I am starting and stopping all the time and wondering if this could be why I feel so rough today. I took one at 8am and its now 3pm so surely my body is wanting another tablet, which must cause side effects if not given, or am I over thinking and just tired. Its all very overwhelming just starting. Thanks.
Hello again Rob … If you are not getting on with Madopar do tell your medical team. My first Parkinson’s drug was indeed Madopar, I had a poor reaction to it & stopped it after 7 days. I am now on Sinemet which works for me,
Best of luck.
Steve2
Thanks Steve. See how it goes for a bit then speak to my Parkinson’s nurse. Like I said I am only 5 days in on 1 tablet a day. Best wait till I’m taking my full dose and give it time. Think I have trust issues after so many doctors told me I didn’t have Parkinson’s. Guess I’ve got to get over this and trust the professionals.
Hi Rob28 I stared meds with
Hi Rob 28 sorry about the break laptop decided to play up. Back to answer
I started on Repinorole then when I visited my nurse she would review my meds, if you have a nurse do get in touch with her/him as they are there for you. Please don’t try to medicate your self i have had PD since 2010. at the moment I take Repinorole 16mgs a day Madopar 8 a day and at night slow release Madopar, but i have had PD a ;long time and not every one is on the same meds. I think that pd has so many arms and no arm is the same. I have tried other medication but had a reaction so my nurse took me off them. As well as your nurse don’t forget that PD UK has a helpline. I have used it quite a lot, ps!! if you have not yet been given a nurse you can speak to one on the help line.
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Hi Rob,
you just need to build up the dose. You’re right at 3pm your morning dose will be doing nothing, how you’re feeling at that point is not a side effect of the madopar, it’s just how you are without it. You may well find you need more than 1 tablet 3 times a day but you need to see how you feel on them and then talk to your PD team. I think you’ll find everythin working a lot better once you’re taking them more reguarly. Try not to worry. As others have said the ParkinonsUK has a helpline you can phone for advice and PD nurses are usually very responsive and get back to patients quickly.
Parkinons is hard to diagnose accurately early on, once you’re diagnosed trust your team they have lots of experience in treating it.
hope you feel better soon,
Podd
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Thanks everyone. Podd You have answered something I was wondering in that each tablet only lasts for a set period of time and once that time is up it has worn off completely, so my single tablet a day at 8am lasts to early afternoon and doesnt build up dopamine or anything like that. I mustvadmit I feel more positive early morning and right now almost 6 hours latr negativity has set in again. I just wish this awful fatigue would go as I have zero motivation right now to do anything. Anyway will see how it goes. 2 tablets a day from Saturday for a week then onto the full 3. I really hope for an improvement in symptoms within a month or I will be very worried.
Hi Rob,
yes the madopar tablets work for 4 or so hours. It varies from person to person and tends to be longer earlier in disease but you wouldn’t expect much of an effect from a 8am dose in mid afternoon. Fatigue can be variable, mine improved a lot with tablets and I think a large part of it was it was such an effort to do anything it just wore me out. However I can’t say it went completely. Hopefully as your dose builds up it will get easier,
all the best
Podd
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Thanks again Podd. Please forgive all the questions as you have brought up something else I was wondering here. I thought one tablet did its bit for around 5 hours then that was it. Tablet dead and effects finished but then I hear that going on medication overall improves things, such as the tiredness you have mentioned. How does this happen if the tablet effects are dead each time we take one and its effects die after a set time. Does Dopamine build up a bit somehow?? Thank you.
Hi Robb. This condition is so variable, and different drs seem to treat it equally differently. My husband was started on madopar x3 daily, and then they rapidly increased the dose. In fact they increased it too much and we had a short sharp introduction to side effects. Your journey will be ‘yours’. Overtime you will learn how the drugs help, they all wear off eventually but the good news is they will definately help you once they work out whats best for you and your symptoms. Then there are other things that can help symptom s, such as exercise, diet, keeping bowels moving to aid absorption of medication. Its not easy, but there are many ways to help your body cope. We access the forum, Parkinsons uk site and helpline, we also are motivated by listening to podcasts that are available. They often have the most knowledgeable guest speakers who can give you tips and information to raise your motivation. Dont get me wrong, we all have days when its harder to cope, today we are feeling more upbeat so just wanted to share the positives!
Hi Jandc Thanks for your reply. Its very reassuring at a time when I am feeling a bit hopeless as though I am never going to feel any better. I have listened to a couple of Podcasts and my partner went to the annual ParkCon event as it was in our home town, which was an amazing coincidence. I also have bowel problems and have now realised it’s a daily battle so I need to jeep on top of it. I just want to see a tiny bit of light at the end of the tunnel. Last week I was also diagnosed with severe arthritis in my hip which isnt helping. Thanks again for your advice and reassuring words.
Hi Rob, fatigue is less of a dopamine thing I think, no one really understands it, but I think it just takes less effort on madopar to do stuff so I get less worn out and less fatigue. Your body will still be making some dopamine but the reason why tablets stop working is the dopamine is used up from them and you don’t really store it. (you can’t really bank it for the future). As Jandc says we’re all a little different. Exercise lots if you can that helps slow Parkinsons and makes you feel better. Carry on doing things you enjoy and go out and see your friends.
Podd
Thanks Podd. Sadly I’ve just been diagnosed with severe arthritis in my left hip too so no excercise for now. Been referred for physio. Wish I felt like seeing friends but am so tired from not sleeping. From yesterday am on my full dose of 3 x 50/12.5 Madopar per day so hopefully things will improve soon. Parkinsons nurse has told me to allow minimum 6 weeks for any improvement. I’m worried I have a more serious Parkinsonism and thats my health anxiety kicking in.
I wouldn’t give it a thought. Your l-dopa dose is tiny the dose just needs to be built up a bit.
Anxiety is sadly another Parkinson’s symptom that just people have to one degree or another. Cut yourself some slack and give yourself a bit of time. How you feel better soon.
Podd.
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