Hi I am new to this forum. My dear dad was diagnosed roughly 4 to 5 years ago with Parkinsons disease. It took a while to get a diagnosis which was eventually achieved through a Dat scan as my dad has never had the tremor that can be typically associated with Parkinsons disease. My dad was 70 years old this year and he has aged at least 20 years in the last 4 as a result of this awful disease. The reason for me posting on this forum is to try and better understand whether anyone has had any side effects from taking Madopar, in particular, diarrhoea. My dad was on Ropinerole for maybe the last coupe of years however this year his neurologist has decided that my dads speech and mobility had worsened and that he would get greater benefit from going on to one of the Levodopa drugs. He started on Stelevo and was fine for about 6 weeks in fact the Stelevo did improve his Parkinsons symptoms it has to be said. I should add that alongside the slow speech, shuffling gait and stiff limbs my dad also suffers with debilitating lower to middle back pain, which we have mostly attributed to the stoop that he has developed. He had a steroid injection last year and this did nothing for his pain. 6 weeks in to the Stelevo, my dad started getting diarrhoea. At first he and my mum put it down to a stomach bug but 10 days later it was still present and thinking it was the Stelevo he stopped taking it. He ended up admitted to A&E in agony with his back pain that none of his pain medication would touch. a week later he was discharged home and this time he was given Madopar (at the same time he was still taking Ropinerole alongside). Within 10 days my dad was back in hospital. As soon as he had increased his dose from 2x62.5mg to 3x62.5mg the diarrhoea started again and within 2 days the excruciating pain and inability to get comfortable was back, this time combined with an inability to swallow and a terrible cough. This time he has now been in hospital nearly 4 weeks... in the beginning he had a chest infection which they said was likely due to him having aspirated some food, so again he was nil by mouth. this caused alot of problems with his meds in the early days in hospital and he suffered very badly with confusion and paranoid delusions which he has never had. After 4 days he had a naso gastric tube put in so he was able to be fed but was also able to re-start his slow release ropinerole. However his neurologist has really wanted to get his drugs stable and scale back the number of opioids he has been on for pain. In the last 2 to 3 weeks, he has been back on Madopar, given through his NG tube, however the diarrhoea has remained a consistent feature. It is absolutely awful seeing him suffer like this, he is red raw from the diarrhoea, his mobility and speech we believe has improved at times and very likely due to the madopar but then he will have these bouts of diarrhoea, that subsequently impact his mobility and his speech and his nutrition! he is painfully thin and utterly depressed. The neurologist wont take him off the madopar as he doesn't think it is the madopar that is causing it. In my frustration I have looked to the internet and decided that what better place to ask questions than on a forum where there are many people who may also have experienced similar rather than just accepting what the neurologist has to say.
Thank you in advance to any readers and apologies for the long story I am not very good at keeping things short sorry!