Over the past year I find I often can't make it to the loo to pee in time, maybe on average once per day. It's not that I just trickle but the whole lot descends in a rush........almost as if my muscles have just given up! There is no hanging on til I get there. I'm trying to do the usual cautions, not too much coffee, very little alcohol, pelvic floor exercise, trying to be pre-emptive and reminding myself to go to frequently. No night time incontinence, in fact I rarely need to go in the night at all.
Could this be related to the general loss of muscle I have experienced with PMR and Pred (for over two years now) or is this just what can happen with old age? (I'm 76 and apart from the PMR been generally healthy and active). I don't know the best way to manage this either. Although I use a Teena type pad, there is no way that this can absorb a full flow pee. Not sure what could!
Have any of my PMR friends had similar experience? I would so welcome your thoughts. I feel it's only a matter of time before I am mortified in a public place by a large puddle around my feet!
Thank you to everyone on this forum for all the support you give so generously.
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Ryeland
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Do seek medical advice as there are different types of incontinence and the cause will dictate the treatment. You need a proper assessment. Don’t feel this is something you have to put up with just yet.
Hi Ryeland, there was a recent discussion on here about this very issue. I'll see if I can find it but you are not alone. The person in question had similar symptoms and numerous tests (which are worth having I suggest) but all was fine. A number of others replied also having peeing difficulties including myself. I was on a high dose of pred (60mgs), thought I had a UTI brewing and self treated, urgency and frequency and more 'leaking' than usual. As I have tapered down all symptoms have almost disappeared (now on 25mgs) so I put this down to pred for me. How much are you on?
Thank you for your reply. I’m on 6 mg at the moment,having got to 5 last month but increased recently to manage a bit of a blip due to Covid and some family stress. But I’m very aware that my muscle strength has been hugely affected by Pred
(Can I just ask why ‘fatsia japonica’ ? Such a distinctive plant to have for your online name)
It's my favourite plant in my garden and one of the first I planted, it's huge now! Also couldn't think of anything else. Perhaps it was the increase in pred which did it? I thought the same, thought that was it, muscles totally useless and heading for incontinence. It is strange that it should have happened to you so suddenly, like me it was almost at the same time as the increase in pred, usually the deterioration is gradual.
I looked for the discussion I mentioned but unable to find it now, I'll keep looking and let you know if it turns up.
Have you thought about talking to the GP just in case it is an infection? We are more likely to catch things if on steroids. Sending best wishes and hope it gets resolved soon as this is very limiting and worrying for you. x
Not necessarily - I have been on pred for over 15 years and have absolutely no pelvic floor muscle problems and any other muscle problems are equally likely to be age-related now ...
As Snazzy says - do speak to your GP or the practice nurse who will be able to guide you in the right direction. It isn't an inevitable and unavoidable part of aging or PMR.
I NEVER thought I would be jawing so much about peeing~!!! I'm in the same boat as you are except I wear Depends. Incontinence was a porblem for me long before GCA and pred. But, I hear you, I don't just go, I do make it to the toilet but it is like waterfall as you say!!! I wear Depends Night Time Defense!! Sounds pretty tough but they will hold a great deal of liquid with no leakage on clothing. Even Depends regular don't do the job.
Sometimes when you have to go...getting up from the chair just tops things off. I am almost 84, but have dealt with this since I was 47. I'm attributing mine increase to an increase in Prednisone and also 'pred sugar spike' and I'm drinking more. But I go more in the am after taking the prednisone, 60mg then the afternoon is moderate. 😉💞
I saw a pelvic physiotherapist. very intimate but most helpful. then i bought a "pelvic wand"
Since starting pred I have developed frequency, too. The actual volume of pee when I go isn't really that much, but I find I leak unless I obey the urge. I wear period pants which I usually have to change at some point in the day. Problem's worse when I get a UTI (3 since last April) but apparently I'm clear atm. Hasn't solved the leaks, though! No downstairs loo, so stairs keep me fit.
Hello random901. I just read your comment about repeated UTIs - I experienced this too and have been put on vaginal oestrogen (pessaries 2x weekly). Have only had one UTI since (now 18 months) and the wee 'dribble' on the way to the loo has improved enormously too. Might be worth talking to your GP? Also have a read of the NICE document at nice.org.uk/guidance/ng112/...
Had a chest infection 5 weeks ago. Still getting the odd coughing fit. Have stress incontinence each time I cough or sneeze . Also noticed a bit of urge incontinence too. Prior to the infection I hadn't had any leaks for a year! Since my back surgery in fact. So I think all the coughing has affected my pelvic floor muscles. Hope you get checked out. I am doing my pelvic floor exercises and hoping the weeing will stop when this cough finally goes. Luckily I didn't throw out the Tena Lady pads!
Hi Ryeland, I'm surprised no-one else has mentioned incontinence in any of the posts I have read so far. I had low level leaks before, on Thyroxine, particularly if I overdid the walking. But it became much worse on Pred. I consider that it is routine with Pred and put it down to the medication causing water retention and reduced muscle tone. As you observe there is no way you can hold it in! After some dodgy walks home with soaked pad and pants I now have a policy of visiting the toilet frequently, especially before walking anywhere. Felt very sorry for my incontinent self on 15 to 8mg. It has eased a bit now I am on 5mg, but is still very much an issue. I am expecting it to go back to my earlier low level leaks once I am off Pred. I hope so, for myself and for you.
It has been discussed before, many times, though rarely as severe as described here. The Related Posts don't appear to be working though. Incontinence can be due to PMR itself or to pred and both appear to trigger irritable bladder. If PMR is affecting muscles badly then that can be a factor - the bladder is a muscle after all.
Thanks PMRpro. I suppose what I am wanting to do is relate my own incontinence firmly to PMR and Pred in the hope that both will be temporary. I would be reluctant to look for treatment for incontinence in itself. This thread has opened up the unwelcome possibility that one day I might have to. Others are braver than me at confronting the issue.
Not sure what you are thinking about when you say "treatment for incontinence in itself.". Sometimes it is just a tablet to calm the bladder lining down, for me it was a urethral stretch, but I'd had 1 long before PMR - the PMR just made that cause worse. Or special physio exercises to strengthen the pelvic floor muscles to improve matters. Or vaginal oestrogen pessaries because that can make a difference.
Whatever, you have the option to say no but it is important to make sure what the actual cause is for YOU. It may well be PMR or pred but it could be something else and this is coincidence. But if it IS something else - you need to know and get it sorted if that is needed.
Yo, if you are having the sort of urine gush you describe the sooner you get down yr dr the better. Very very unlikely to have anything at all to do with PMR or Pred. It could take a while to sort out so the sooner you get it assessed the quicker it will be resolved.
I am currently seeing a urology physical therapist and she is teaching me all kinds of exercises that are helping. It’s a new field but so far very helpful.
I have the same issue. Last August I started to get frequent UTIs. After courses of antibiotics for the UTIs, I found I needed to use the loo every hour or two, as long as I did I managed. When the UTIs started I was down to about 6mg of pred, I got to 2.5mg but recently had to go back to 4mg due to a PMR flare. I should also say in march I was diagnosed with adrenal insufficiency after testing at 3mg of pred. At the same time as the PMR flare my stomach started to hurt and I was diagnosed with acute diverticulitis. I ended up in A&E where I caught Covid. So, PMR flare, diverticulitis and Covid all together. After all the antibiotics and laxatives prescribed for the diverticulitis my bladder and bowel have not returned to anything that is manageable. I left it a couple of weeks after the end of the treatment to give my body time to reset, but it didn't. I agree you should go to the Dr. I have had a variety of urine and blood tests for the bladder issue, which like yours is a full bladder and needing to get to the loo urgently and not always being able to do so. The GP thinks there is a possibility my bladder is irritated. I am currently taking antibiotics to see if this helps. While I haven't found the solution yet, it is best to try to do so. I am waiting on a surgical team to look into the bowel issue too.
"The GP thinks there is a possibility my bladder is irritated."
There is a condition called irritable or overactive bladder - and there is specific medication for it. Has he not tried that rather than antibiotics - it may not be a bacterial infection so they would be useless.
It's interesting you say this because the last telephone call I had with the urologist I am under said to put me on Vesicare for an overactive bladder. My GP wants to try antibiotics before trying this. I am into day 4 of a 7 day course and at the moment no change. I think I will be trying Vesicare next!
Your GP is crackers - has he done a urine culture to identify if it is a bacterial infection and if so,, which antibiotic is best? They have been told over and over not to overuse abx but they persist with it.
In PMR there are several potential causes of the symptoms of cystitis - including the calcium supplements they put us on. I had to stop calcium for a time and now I use a different one, calcium citrate, which is better soluble but I have to pay and it isn't cheap. I also have a mechanical problem which leads to an increased risk of infections but constant abx wasn't the answer, it was actually correcting the problem!
Several people had problems with grit forming in the urine and causing mechanical irritation. I stopped the version of AdCal I was using and took 4000 IU vit D plus a really good calcium intake in diet, Since I had a bisphosphonate infusion I have needed calcium again - but pay to get citrate in the hope one dose a day will avoid the grit problem!
It worked occasionally for me when I had a confirmed UTI that recurred every 4-6 weeks - but amoxicillin did finally give me months of no recurrent infection. Which I suspect says something about their passion for nitro!!!
One of the many things I react (presumed mast cell isues) to is calcium carbonate, which is partly why I stopped taking it. I have only recently learned that Adcal is also responsible for constipation.
Hello Ryeland, Yes I relate totally! I have lots of pairs of cotton trousers (and knickers) and have to wash them most days. I am not sure if this is due to ageing (I am 74) or the general weakening of our muscles including our bladder. Like you I take all the precautions...it is what it is and it could be a lot worse.....
Before I was put on a prophylactic antibiotic cycle (3 months of nitrofurantoin, 3 months of trimethoprim and 3 months of another one), I had to know where the nearest loo was. Now I can last for 6 hours. Changed my life. No recurrent UTIs. I will have a urology appointment a month after the end of the 9 months.
Hi, I find tea is a huge trigger for my overactive bladder. You mentioned coffee and alcohol, but not tea. After years of trying different things and seeing the continence team, I have been having Botox injections into my bladder for about 5 years. Although it doesn’t stop me having to get up in the night occasionally, it has helped stop the gushing, and given me more confidence when I go out.
I had 3 pelvic floor surgeries due to prolapse and have had incontinence issues for years. I was going to physio specialist and finally my gynecologist diagnosed me with an overactive bladder. My muscle strength was fine. The problem was with my bladder. I use Depends and have not had an overflow issue with them although I did with even the most absorbent pads. Incontinence is not always what it seems. Well wishes sleuthing out the issue.
The medics assume it i all to do with ageing and pelvic floor, but in my case my bladder problems were due to Painful Bladder Syndrome aka Interstital Cystitis and in my case Cimetidine eventually sorted it out. The charity Bladder health UK was crucial to me getting a diagnosis having been fobbed off by doctors for many years. When I eventually got an appointment with a uro-gynae consultant she said they see this a lot with 'algias' eg polymyalgia. As others have said there are many different causes so push for answers. Interestngly, my problems got worse as I reduced the steroids and improved when for other reasons I had to increase the dose, which to me points to an inflammation issue, which it turned out to be. The steroids were dampening down the inflammation.
Also see if you can spot a pattern, keep a food and symptoms diary. Tea and coffee are the worse cu;[rits for me and I can only drink them once I've taken the histamine blocker Cimetidine in the morning before eating or drinking anything else. Even then I can't drink wine fruit juices or fizzy drinks ever or anything citric or acidic
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