Hello, hope you are all well 
I’m here for some advice!
My mother in law has been diagnosed in January. She is currently on Madopar 2x 50mg 3x a day (I think, not 100%) and since she’s been taking this she has rapidly declined. In the last month she has got so bad. Hallucinations - mixed some are not so bad but some are awful like in the middle of the night often thinking people are downstairs. Her face swelled up, she was falling asleep unexpectedly mid sentence and hallucinating whilst asleep. She has extreme diarrhea as well. Before being on this medication although the tremors were bad she did not have any of these side effects.
My father in law is main carer for her and has been amazing however he decided yesterday to stop her Madopar completely as things were just getting worse by the day. I don’t think he’s spoken to the doctor about it. He will contact GP on Monday. But I am worried about something happening this weekend.
Weirdly, she has got a lot better. Her face is less swollen, her speech has improved, her hallucinations and falling asleep has stopped. She said she felt shaky but in general she seems so much brighter which is obviously great but everything you read says do not stop this medication without speaking to doctor.
When you google stopping Madopar the results are quite scary and sounds dangerous.
My questions to you all are:
- Has this happened to anyone before - better off the medication rather than on?
- When coming off Madopar if bad things are going to happen is it instant or can you have a few good days and suddenly crash?
- Is it normal to see symptoms get worse 2 months into Madopar - does it get better if you continue with it? Or is the dosage wrong?
Many thank!
Hi, @Islaeng26. Firstly, welcome to the forum - we’re really glad you found your way here, although I’m sorry it’s under such worrying circumstances.
It sounds like it’s been a very stressful time for your family. Some of the things you’ve described can sometimes be side effects of Parkinson’s medication, but it is indeed really important that any changes to medication are discussed with a GP, Parkinson’s nurse or neurologist.
Stopping medicines like Madopar suddenly can sometimes cause problems, so it’s good that your father-in-law is planning to contact the GP. If you’re worried over the weekend, you could also consider contacting NHS 111 for advice.
You’re also very welcome to contact our free and confidential helpline when it reopens tomorrow: 0808 800 0303 (9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays). Our trained advisers and Parkinson’s nurses can talk things through and help you think about the next steps.
Everyone responds differently to Parkinson’s medication, and sometimes the dose, timing or type of medication needs adjusting to find what works best. Hopefully the doctor will be able to review things and guide the next steps.
You’re very welcome here, and hopefully other members will share their experiences too.
Take care 
Parkinson’s UK Moderation Team
@Islaeng26 I started taking Madopar 62.5mg In January, stepping up to 125mg there has been some little things here and there and when I went from 2 x 62.5mg 4 times a day to 1 x 125mg 4 times a day I had a few bad days but things have settled now.
Its been said on here a number of times and by my consultant that not every pill or dosage works for everyone and sometimes changes may need to happen to get the right treatment.
If it was me I would ask the father in law to get in touch with NHS 111 today and not wait until Monday.
Johan