Stalevo and incontinence.

[Grey_Area]

OK no one likes talking about this stuff so I'm gonna be brief. I've been on Sinemet for 9 years.

Entacapone introduced in February.

Transferred to Stalevo over a period of four weeks, been on "all Stalevo" for about 5 days.

Which, coincidentally (or perhaps not) is the same length of time I've been getting a tingling sensation confined to the tip of my penis (sorry ladies). It's not a pain or a burning sensation. It just feels like I may have leaked a little pee (though on checking, I haven't). Gents who have had the "post-pee dribble", either due to health problems or rushing a job that shouldn't be rushed, would I feel recognise the sensation.

It's not painful enough to be a UTI, but the only medication that HAS given me a UTI in the past was Opicapone (just one amongst a suite of problems that it caused), so I'm kind of eyeing the Stalevo and it's Entacapone content with suspicion as they are both COMT inhibitors.

The ultimate question is, as always...anyone else?

[Smokeypurple]

I can't help you directly - not having the body part for a start - but I hope there are some responses as this is just the kind of stuff that needs to be discussed. I wonder if you have considered trying something like d-mannose how to help guard against urinary tract infection? I know a few people who use it of all ages. It is supposed to discourage the bacteria from sticking to the side of the urinary tract. It's on my list just in case - although these people don't have Parkinson's as far as I know.

[Grumpy77]

So why do you suspect that COMT inhibitors might be the culprits?

[Grey_Area in reply to Grumpy77]

1. I've only had one UTI in my life and that was whilst on Opicapone.

2. This "tingle" started the very moment when I switched to "all Stalevo".

3. I'm currently in the process of "coming off" the Stalevo by replacing my 6pm and midnight doses with just 2xHalf Sinemet (simply because assessing how I feel now, and despite some possibly placebo-effect type improvements on the first day, I feel worse than when I first took Entacapone back in February). I've only done that for two days...but the tingle has gone.

I have to say it was a pleasant surprise this morning to have my pee look "normal" rather than the strong golden yellow or has been since taking Entacapone/Stalevo. That doesn't factor into my health assessment at all...it's just...normal...and anything normal is good these days!

[Grumpy77 in reply to Grey_Area]

Hmm, I should be very worried now bcos my pee deviated from normal colour to strong golden yellow ages ago. Together with urinary incontinence, frequency/urgency, lower back pain, dribbling... i was sure my prostate tests would come positive. But thankfully prostate blood test, a while ago and direct test, more recently were negative. Though I'm still worried bcos chances are that with all these red flag symptoms, I've got something. And something else with these PD symptoms already wearing me down... is going to devastating for me 😞

[jeffreyn in reply to Grumpy77]

"i was sure my prostate tests would come positive"

Come back positive for what? Enlarged prostate? Prostate cancer? These are 2 different things.

[Grumpy77 in reply to jeffreyn]

Actually the first test I had was a blood test, which measures the level of prostate specific antigens in the blood to detect prostate cancer levels. The other test, were the Doctor sticks their finger up your backside, could detect both enlargement and cancer

[Grey_Area in reply to Grumpy77]

Man, I hear that... Parkinson's gives me enough to deal with. Anything on top, even a cold is like the last straw on the camel.

[Hidden in reply to Grumpy77]

Did they test you for a UTI? This happened to my PWP when he was on Entacapone and Sifrol - also have they checked if you have an enlarged prostrate? Have your prostrate checked as this can cause big problems and you will find you can't pee and your bladder can rupture because you can't pee - this happened to my PWP and they had to insert a Foley to drain his bladder for 2 weeks to open the canal enough.

[Grumpy77 in reply to Hidden]

"Did they test you for a UTI?"

Not yet. That's what I've got to get tested for next.

" Have your prostrate checked as this can cause big problems and you will find you can't pee and your bladder can rupture because you can't pee"

Yeah, I had tested for that. The doctor's finger up the backside I mentioned above, checks for both prostate enlargement and cancer.. as I understand it,.. doesn't it?

"they had to insert a Foley to drain his bladder for 2 weeks to open the canal enough"

Was your PWP fix to a normal peeing state eventually? How's he doing now?

[Hidden in reply to Grumpy77]

Anyone can get a UTI although males are not as prone as females - a course of antibiotics will get rid of it and that feeling of leaking should settle. They did an ultrasound on PWP to check his prostrate and found it was causing the problems. He has had problems with over active bladder - he had many accidents and has issues with needing to go urgently and leaks a lot - after getting the prostrate under control with drugs he has been working on it with trying to re-educate his bladder. The urologist said he is on the right track with what he is doing - he tries not to go when the urge hits ( only at home lol) for as long as he can - he has been doing this for about 6 months now and he is getting somewhere - I suppose it depends on how much you want to have control again - it is about 6.5 months since we got him off Entacapone and Sirol - entcapone you can just stop but sifrol it took almost 4 months to get off that and he was a different man - his PD in all aspects changed and he went back to how he was when he was first put on Madopar and it was great to see the improvements in his life. He has got normal flow now with the odd small accident - mind you we are in our winter and it may improve more in summer - he will be on the drug for prostrate for the rest of his life - mind you some of his problem could be caused by a massive hernia in his groin - he is having surgery for that in 2 weeks time and fingers crossed it all goes well and he can get back to normal quickly and can get back to doing all his jobs and interests again.

I hope you get the answers you need and can resolve your issues - it is harder for a male than it is for females ( you could try wearing a kilt) just joshing - I have problems caused by nerve damage in the lumbar region - so I understand how frustrating it is to not have full control.

All the best and try not to stress.

[Gymsack]

I am "allurgic" to COMT inhibitors . They take time to show the reactions and the same amount of time after you stop taking them to wear off. Muscle pain like never experienced before and started seeing things that where not there and a strange tingling all over and my wife says a change in personality. Through a failure to communicate on my part my Neuroligist prescribed Entacapone to lengthen the effects of CD/LD. I did not realize it was a COMT inhibitor . I would not even have recognized the symptoms you describe because i was pretty sure that I was toast. The world is divided into two types of people , those that can take comt inhibitors and those that can not .

On the topic of the male urinary system . I have had two operations to relieve the prostrate pressure on the urine discharge tube (Turps) because the catheters I wore for a couple years kept plugging and I almost exploded . My advise to anyone in that situation considering the operation DONT .

[Grumpy77 in reply to Gymsack]

"On the topic of the male urinary system . I have had two operations to relieve the prostrate pressure on the urine discharge tube (Turps) because the catheters I wore for a couple years kept plugging and I almost exploded . My advise to anyone in that situation considering the operation DONT"

Since you've advised against the operation.. what do think someone who has the same issue as you, do?