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!
I've been on madopar for some considerable time now and havent had the side effects or any to be honest, but i have also entacapone, and was told 1 in 10 don't tolerate it for the reasons you have given, stalevo or how ever its spelt contains entacapone.
I think a common side effect of Entacapone is diarrhoea six weeks after starting it. As Sea Angler says, stavelo has same medication in it, so presumably can have same side effect.
I have had no probs with Madopar, nor diarrhoea with Entacapone, just indigestion !
Hope you can find solution.
You could phone the P UK helpline for advice, they are very good . Click on 'Support' then 'Helpline'.
Thank you for your responses. The neurologist has now conceded that there may be a link between his diarrhoea and the madopar. his doses were halved yesterday and already the diarrhoea has eased. In place of this they have put a ritigotine patch on him. I do feel that my dads neurologist knows what he is talking about and is trying to do the right thing. He doesn't feel that diarrhoea is a common side effect with madopar so although his dosage has now been reduced he has also got a referral to see a gastroenterologist to have further investigation in to his bowel to rule out any other potential issues.
Glad to hear something is helping your dad. Having had a lot of diarrhoea he may need something to put the put the lining back into his intestines. Bio-active yoghurts usually do the trick!
As well as PD I have a chronic spinal disease that has left me with chronic pain every day for the last 20 plus years. I am on a shedload of daily Opioids (Oxycodone, Morphine) to help deal with this.
After the PD diagnosis, I have been put on Sinemet, but now it has been decided I should move onto Stalevo. Given the Opioids I am on leave me massively constipated, I would rather welcome a bit of a bowel loosener! I'll post any results back up here.
Hope you find a way forward for your Dad. Your post chimed with me in so many ways. I am 64 this year, and have suddenly started losing loads of weight, due perhaps to my total loss of appetite (I have swallowing problems, and get queezy very easily). I had started to age and deteriorate until I went onto the Levodopa drugs. I am told I "Look" a lot better? Can't say as that I feel it, though!
Hi mb420
I to suffer with pain two crumbling discs and early signs arthritis degenerating spine and lower back pain also nerve ending damage so yes i am also on a lot ,but recently I've started gopo also goes by the name litozin have a look it's meant to drop your pain meds and it does not interfere with your meds rosewater capsules
Gus ~ sorry for the delayed response, and thanks for your input. I have looked into Gopo, but am unsure if I should try it as I am having stomach/bowel/bladder problems right not. I had hoped the switch to Stalevo would loosen things up, but not at all! Not only constipated, I am also getting awful nausea every morning, get bad heartburn and have lost most of my appetite. Not surprisingly I have lost a lot of weight! So I'm just not sure I want to add anything into my diet that has even the slightest possible effect "down there".
Ha! I used to drink coffee (proper organic beans, ground on the day by myself), but that started to upset my insides, so I went to Cocoa, which was fine for 2 weeks then that began to upset things. At the moment about the only drinks I can cope with are Organic Non-Homogenised Whole Cream Milk, and Ribena. Barley water used to be okay, but that makes me nauseous now too!
Well DizyDory ,Gus Sea Angler Supa every thing I have read so far, has been me, so I wont go over it all again your poor Dad has suffered as did my Father but throw in that deadly miners disease pneumopconiosis, known as the black lung disease and he died horribly and yes watching a loved one slowly closing down is not nice, but you can fight back I have suffered all the heinous horrible symptoms your father has some worked some did not but eventually it became evident that Madopar was my way back to semi normality if you can describe me as normal, and things really panned out when I had the Duodopa system installed and I mean installed as if fitting a new fuel pump to a 747, however once the unpleasant bits were behind me, I could walk talk write, all within reason of course no marathons or heavy work in the garden , the system consists of a small but weighty pump which delivers a precice amount of Levadopa Carbidopa to my small intestine where it is immediately absorbed by passing the stomach and having a immediate effect on parky, its been installed for 4yrs, and though its been tweaked a couple of times to arrest some slight shuttng down, its more or slightly less working as spec but theres always a but isnt there, upping the dose to keep me on song if you like is causing very annoying diarrhea but if I reduce the dose to stop the runs well I freeze, but as in the past my body will addapt and things willl equalise, I hope so then the back pain I had the same OP for the same result, so we run the same race my friends a race we cannot afford to lose
Hello there. This is my first attempt at writing in. I took Madopar for a whole year with no problems. Then I took Acarbose for my diabetes and within four weeks was suffering from diarrhoea. I have stoped the Acarbose but 40 days later I am still suffering. It starts at about 5am and continues for about 4 hours daily. I am at my wits end. They say you can’t stop taking Parkinson’s medication but I can’t see myself putting up with this for ever. I have lost weight, my appetite and feel awful. Is this common among diabetics with Parkinson’s ?
Sorry that you’ve been having these symptoms, it’s understandable that you are worried about this. We’re sure other members will get back to you with their experiences, but meanwhile
you can always give our Helpline a call on 0808 800 0303 if you have any medical queries. They are open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm, or you can email [email protected]. They will be happy to talk through your concerns and offer advice.