Apologies if this is a tired subject for the experienced on this forum, but I should really like to collate as much anecdotal evidence/ experience as possible to present to my rheumatologist. I’m posting this today while my level of this afternoon’s upset is still fresh in my mind.
Basically, about a month after I began on 60mg pred ( massively higher than that during my week in hospital, in August) I began to notice a problem with leaking. Gradually the hitherto long term use of mere pantyliners was clearly insufficient. As it went on, a few weeks ago I asked my rheumatologist about the (to me, obvious) connection between this onset, and pred, and she informed me she’d never heard of any such connection, nor had patients mentioned it before. Indeed, there’s no research I can find that suggests a link ( except one paper on Pred, incontinence and dogs. Draw your own conclusions).
When I wrote about this a couple of weeks ago ( during my first week on the site) over 20 people responded that indeed they had experienced similar things. Although, someone very experienced mentioned that Amlodipene could be the culprit, and indeed that particular blood pressure drug, along with two others, has indeed been found to cause incontinence.
But I now need to be specific to see if anyone has parallels - I had twins 36 years ago, have always done my pelvic floor exercises ( not necessarily ardently, but always been aware to do them) ... but this experience is just extraordinary. Thanks to lower dose of pred, presumably, (17.5 to date ) my sleep isn’t so disturbed as it was - so I can sleep several hours ( well, up,to four, lucky me ) without waking up, or having any kind of accident at night. Thank God. However ... I can go to the loo half a dozen times before leaving the house, but the minute I start to walk, the leaking starts. And I mean, the flooding. I’m sorry to be graphic, and promise I shan’t revisit this again, but I just want to know how “ normal” it is to have soaked through a sturdy Tena pad and two pairs of leggings within half an hour of leaving the house. It’s really quite distressing because it’s absolutely impossible to prevent. It’s as if a different chamber is opening, and it’s nothing to do with me.
So, my question is - can I ask my rheumatologist next week whether I should try changing the Amlodipene, just in case? Except that this problem started before I was put on the blood pressure meds, but still... or, could I argue that this is directly caused by the pred, and the condition is worsening even as the dose is reducing, and see what she says. Really, I’d like to know if anyone’s experience tells me that this, too, is normal, and I should just get over myself... or whether they think it might not be the steroids. The alarm is coming not from the fact, but the uncontrollable Noah’s Ark nature of the problem.
Apologies for being so long-winded, and I shan’t write about this again!
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Frewen1
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Sorry to hear of your problems with leaking.Since being on steroids I have had 3 episodes of sudden incontinence - no warning- once I had cycle shorts on so that was ok, once I was at home, once I had just sat down in car . Since reducing my steroids am on 3.5mg now haven’t had anything for weeks- hopefully as you reduce it will improve- steroids cause muscle weakness so bladder is a muscle
Yes, I definitely have to “go” much more frequently and can’t hold it for very long at all. Defo Pred I think , cos I had a Caesarean with my son , so no stretching at all and never ever had problems before!
I too have frequent urination from about 4:30am-9:30am, definitely caused from taking pred. No “leaking” per se, however it was worse on higher doses and while I was taking medication for high bp, that contained a diuretic. The combo of both medications meant interrupted sleep for sure (I split my pred dose btw, taking 2/3 at 11pm in enteric capsules so it’s on board around 2-3am).
It maybe a combination of your two medications, combined with pelvic floor issues from formerly having twins. I am aware of the wonderful results a pelvic floor physiotherapist can provide as I’ve experienced the benefits first hand after a partial hysterectomy surgery (not incontinence related mind you).
You could request a different bp med, and/or see a pelvic floor physiotherapist, especially if you note continued leaking at lower pred doses.
Wishing you all the best moving forward and hoping you find some relief!
I am also taking Amlodipine and 15 mg Prednisolone and having bladder problems although not to the extent as you Frewen, sorry that you are suffering like that but good advice above.
Don’t know if it helps as my experience is so short - prescribed 60 mg Pred 8 weeks ago, for GCA, reduced now to 30, and 4 weeks ago my bladder more or less lost its ‘valve’ and became a ‘slow overflow’ - I’m coping by fluid fasting, and frequent emptying. I’m Only other drug I’m taking is Omeprazole, prescribed alongside the Pred, but seems there’s support on the forum for replacing this with plain yogurt, which may provide enough gut protection , perhaps without this unfortunate side effect - I’m definitely going to try it!
Please don't "fluid fast". I think that tends to lead to other problems.... That being said, I now try not to drink too much water too close to bedtime, but I do drink a lot of fluids (water and tea) when I get up.
Agreed, it doesn’t feel healthy to cut down on fluids! But it does help me to not drink anything for a couple of hours before I have to go out, - say - shopping once or twice a week.. but easy for me as no longer working outside home.. my thinking was that muscles - like my arms if I do too much- and bladder ‘valve’, are perhaps not receiving enough oxygen to function properly? Or maybe the ‘warning to pee’ feeling has gone the same way as some of my other pre-Pred feelings, like being permanently cold all the time, or knowing when I’ve eaten enough🤭? Newbie theory, probably waaaay off! 🤔😂
Oh how stressful for you. I experience nothing like you describe *but*
While I’ve always had a weak bladder it is definitely worse now. A little leakage but generally as long as I go as soon as I get the urge then I’m ok.
You mentioned a link between pred, incontinence and dogs. It made me laugh as walking my two today I experienced such an urge I had to drop my knickers right beside the path. The benefit of being on Dartmoor of course is that most paths can be quite isolated and my dogs tend to stand on guard for me.
Please don’t worry about raising any issue here you are amongst friends and people who will empathise with you. Having said this, the problem seems extreme and unusual. If it happened to me I would want to see an expert in is it Urinary or Genito- urinary medicine, as a matter of urgency. Pred could have triggered a problem that was waiting to happen and so could other meds. It’s the extent of it that is unusual. I know Pred can cause muscle weakness. You need an expert though. I am a mother of three with one quite traumatic birth experience and that’s what I would put it down to.
Frewen1 l agree with SheffieldJane you should see your GP as a matter of Urgency, take a Urine Sample for Testing & you need an Expedited/Urgent Referral to Urology/Gynaecologist for assessment.
The Meds may be coincidental or could have had an impact on a pre existing condition.
Thanks to everyone so far - my confusion is because there are two situations here at once ... no sleeping incontinence, and when indoors, usual urge to pee followed by a bathroom trip. BUT, once walking (ie outside) never an urge, no sensation except that there is constant leaking while I’m walking about. Never had a problem before. Was tested recently, no infection, but from what you are all saying, shall ask for referral. x
There is obviously as issue with the mechanics of walking & the bladder and possibly the cold. There are Specialist Urology/Gynaecologists & it really does need investigating.....
It probably comes under stress incontinence - and it needs to be investigated as it is obviously due to some form of pressure on the bladder. It may just be gravity and less effective muscles due to PMR - but it may not and THAT must be ruled outl
Yes I know the link ( my father had PMR many years ago ) but as far as I know it’s just left temporal, and aorta. (Just!) I have no joint pain, just normal osteoarthritis I’ve had all my adult life
I had waterworks issues like you when I was on Amlodipene, and higher doses of Pred above 10mg, had to change B/P meds several times to get if right. I wasnt able to hold when I had the urge I had to go there and then made leaving the house fraught with anxiety despite the use of our friend Tena! ( I had x3 C sections so not usual stretch prblems of norma births) Once I got the BP meds right and lower doses of Pred much more manageable. Had a bad flare recently had to go back up to 15mg pred and guess what, back came my incontinent issues! Life wasnt meant to be easy!
I’m a man, 68, and I find when I have to pee it is now. I’ve even pulled up in a screaming hurry on side of freeway jumped out and peed next to car.Every night I am up at least once sometimes more. I can’t reduce my fluid intake as I become dehydrated and constipated
We have all seen a rheumatologist but these guys don’t keep a database on common symptoms nor are they researching. Mine said can’t really help you just come down as quickly as you can handle it, no need to come back
Is there anyone really researching PMR for better cures.
My old GP whom I left, I am sure he thinks it’s in our minds, he showed no interest so I sacked him after 30 years.
My new GP is very sympathetic and has a number of patients with PMR
I think this is extreme enough for you to ask for an urgent referral to Urology. As a man you have to bear in mind Prostate Cancer that is prevalent, as you know, amongst mature men.
Hi Frewen1. My message was aimed at Triumph650 (above), and had entered it directly under his message. I also looked at all the user info, checking those whose sex was not obvious. Anyway, hopefully no harm done.
I was addressing Triumph 605 who is a man, experiencing problems that could point to prostate issues. Sorry for the mix up, the nesting of posts doesn’t help.
Great to see another male in this thread, because I'm the same - when I feel the need, I need to go NOW, as you say. 😀I have hardly been out since the start of this epidemic - 'shielding' Walks are 'safer' since public toilets are being kept open this time round. Men are lucky since it's easier to 'go', behind a tree, etc, but i now keep a spare bottle in the car!!! Lets hope that it gets back to normal when I finally reduce Pred to zero.
So sorry to disappoint everyone ... maybe I’d better put my picture up, as I’m female! Not quite sure where the misunderstanding originated (especially as I mentioned I’d had twins)... but wishing you all best anyway... I’m sure there’s still lots of stuff to share...
If you look at the reply you will see it was made to Triumph650 - on a computer it always says so in these sub-threads, not sure about on other devices. But don't worry - people aren't assuming you are male, they are replying to someone who said he was male. Unfortunately replies don't necessarily appear immediately next to the comment they are in response to - but they DO usually say who they are for.
Hi Frewen1. So sorry to hear of your incontinence issues. Lots of things been mentioned and all very relevant considerations. Although I don't have the scale of problem you're having to manage, I have definitely noticed a significant increase in the need to wee, both during the day as well as the night. I've also found I'm unable to 'hold off' from going for a wee for as long as I could pre-pred and if I wait too long, I either..... almost....or indeed would ......leak. Seem to be several factors possibly contributing to your situation .....childbirth, bringing about weakening of pelvic floor muscles, steroids, again weakening those muscles and causing loss of muscle tone, and possibly another underlying health issue....which may or may not be related. Either way, your incontinence problem does seem quite excessive and although it may be aggravated by your meds, the cause may be independent of that. Like others....I would suggest you speak to your GP and maybe request a genito-urinary referral. Always best to get these things checked out. I wish you luck and hope you get sorted soon.
I have also had a problem with bladder control since I started taking prednisolone last February. In the mornings I need to pee about once an hour. This became a real problem during the first lockdown when the public toilets were closed. After a couple of "wild wees" in inappropriate places, I have been using Tena pull on pants and I find these are very effective. They are also comfortable to wear. I wear long tops so they are not obvious.
When I was on higher doses of prednisolone I eventually lost bladder control if a toilet or a suitable place was not available. It is not so much of a problem now since the public toilets have re-opened and I have been able to reduce my dose of prednisolone. I am taking 3.5mg daily at the moment.
Nowhere near as bad as you, but although I only started on 15mg of Pred it definitely affected my bladder. I had numerous urine infections which didn’t seem to respond to the usual antibiotics. I had to get up 4 or 5 times a night and find a rock or a bush to hide behind when out walking our dog. It has improved gradually and I finished Pred about one year ago and now only have to get up once a night which probably is just an age thing! Although when out walking I still have to “dive for cover”. Good luck
Hi Frewen. Poor you! I have similar symptoms only not so bad. The Good news is that it has definitely improved since pred lowered to 5mg a day.FastTrack
My weak bladder problem started before I was diagnosed with pmr so it wasn't pred that caused it. The doctor and rhuemy were not interested when I mentioned it. Like others have had to pee in some very peculiar places! After 2.5 years and down to 5 pred I suddenly find I have more control of my bladder, still getting up 4 times a night but no serious accidents for a month. I found the waterworks problem as stressful as the pain. Your problem sounds extreme though be firmer with your doctor.
Sorry to hear about your bladder issues, Frewen1. Just for your record, I have been taking Amlodapine 10g along with Bendroflumethiazide (diuretic) 2.5mg for many years, then Prednisolone (15mg start in March 2020 - now at 7mg). I've had no leaks whatsoever in these years and no difference since the Pred, just a bit cross-legged sometimes if I get involved in something and wait too long ! I hope you get this resolved soon.
Thanks for that ... it’s so interesting how people react so differently to the drugs - ie little or lesser adverse side effects. I was quite miffed when rheumatologist told me not all her patients got moonface. Huh! x
It is absolutely NOT even remotely "normal" and your GP should be referring you to an incontinence clinic as well as doing some basic investigations.
I had leakage with PMR (no pred, no other meds) but it was just a small amount, more sort of permanent dampness and it didn't sink in that it was urine for a long time. It improved after going on to pred so I assume that was jsut muscle weakness from PMR. I've had a few instances of urgency but they are rare - and I do wonder if they were associated with UTIs because I have none of the usual signs and symptoms but can still have positive dipstix or cultures.
I can say i have had to run to the loo and have not made it !! While on a higher dose of pred , in my case 40mgs. I was so low wondering what the hell was going wrong with my body. Just another thing to add to a long list of things ! i couldnt face seeing my DR again, but have to say as i started to taper ,i started to get my normal functions back ! I have taken Lorsarten for years for my BP with no side affects . So in my case i know its the Pred that was doing it. Im now on 4mgs of Pred and can even hang on a while if i need to go !! Hope you get it sorted its a horrible side affect. Best wishes Viv x
I’m not at all sorry you’ve posted this again as I too have been suffering with leakage. It seems to have come completely out of the blue and never suffered with it before. I’m on 3.5mgs Pred and vitamin D. Had no problems when on high doses.
But I have put it down to weakened muscles because of PMR. My legs are also feeling weakened and don’t always support me when I stand. Not sure whether to mention it to GP as I’m sure the pmr connection will be dismissed. Hope yours listens carefully to you as it does sound more extreme than most.
Oh, sorry fir you too... I have GCA in fact, not PMR, but certainly get the weak legs. Interested that you didn’t have this on higher doses, because, strangely, my W/works definitely getting worse, but my dose is a third of two months ago... have GP and hospital appts next week, so shall attempt to be firm !
I have had problems with frequency and stress incontinence and leaked a bit when I was on 30mg prednisolone. I did discuss it with my GP who thought it was PMR/Pred related and called it interstitial cystitis. Thankfully it has got much better now that I am down to 5mg. However more recently I have noticed that when walking I do feel like I want to go even if I have already been. Mentioned this to my Rheumatologist who suggested it may be linked to my degenerative disc disease and to keep an eye on it. I have been investigated for Cauda Equina impingement but this turned up kidney stones! I would suggest talking to your GP as they can refer you for investigation.
I'm having all sorts of bladder problems - including like you leaks when walking, and overactive bladder at night I've now been referred to a bladder specialist, but so far only over the phone consultations and no tests yet. Being on a higher dose seems to be helping me atm but I suspect that it is causing water retention by day which is indirectly solving the problem!
I'm wondering if PMR causes some kind of mast cell activation in the bladder - interstitial cystitis? My GP has told me before that Pred makes your muscles including the bladder weak - but why then is the problem partly solved by increasing steroids (for me anyway - I know others say thngs imprved on reduced steroids)? As I have mentioned before I have histamine intolerance, which I think is linked to inflammation levels, which can manifest in different parts of the body including causing an overactive bladder if I eat things like food additives, pickled or fermented things. The pattern certainly matches with things you are told to avoid if you have interstitial cystitis. And IC is common in people with autoimmune illnesses. I wish there was a doctor who could piece all these things together but that's not how the medical system works, each specialist just looks at their bit of the body in isolation. i see a rheumatologist, immunologist and uro-gynaecologist - I can see patterns in what is going on in my body but they aren't interested in my theories only what they can prescribe for what they think is the problem. Dr Mackie's slide of the blindfolded doctors all examining an elephant and each concluding it is different animal according to what bit they touch comes to mind
Brilliant analysis, that’s just what I am discovering... also concur with the mystery of lower doses causing worse leakage. Love the elephant analogy !
I can relate to your problem. I have to urinate at least twice a night and often have urge during the day. When out I go to every bathroom available, just in case and still have to rush to bathroom when I arrive home. I take amplodipine as well as hydrachlorazide, a diuretic, for b.p. issues. Do not want to change these as I am intolerant to statins, and want to take as little medicine as possible. I have been on same b.p. meds for years but did not have the day problem until I added prednisone. I am down to 2.5mg prednisone and very, very gradually tapering. Perhaps, the amount of water I drink during the day also contributes to the discomfit. Oh, so many things to ponder.
For me, since reaching perimenopause, I experienced unbelievable bladder urgency but managed to not actually have an accident. Really don't know how.
I requested an appointment with a pelvic physio and also use localised oestrogen and systemic HRT. It was well worth seeing the physio and I would recommend that you either go down this route or gynae although I would say that gynae would be more likely to recommend a surgical or medicinal approach rather than the physio who is about strengthening or relaxing tight muscles. I do believe the turning point was the oestrogen though!
The message is that it not normal but common and there's lots you can do even if it drug related. Don't live with it.
I’ve done the exercises for a long time, and that’s the unnerving thing ... they work when feeling the urge to go for a pee, but not, when outside, walking, and this flooding starts... as if it’s someone else’s body...thanks for advice
Since commencing treatment for GCA that includes a reducing dosage of Prednisolone from 60 mg I have experienced extreme urgency to urinate. It is a noticeably different development and a considerable nuisance and if I don't get to a toilet sharpish then I will be incontinent. I now am even more attentive to personal hygiene as it is a constant issue as I am not allway's quite quick enough. As the dosage reduces (that's with the God's) I will try to remember to contact you if there is an improvement.
Just as an aside on the issue of dog incontinence with pred..... the problem there is that the dog will drink copious amts of water (most canine issues are treated with short term high dose pred) and many owners do not realize they will need to go out more often to relieve themselves. Poor little guys will usually do their best, but owners that work or leave for long periods of time will find that at some point a normally "trained" dog will pee indoors.
I find that in the last week I have needed to go behind trees on walks. Also always have to rush to the loo on arrival back home - which I attribute to temperature change as I come into the house. This latter has been part of the picture since pre pred. I have been on 19mg for a month 9 months in to PMR and don't feel I am ready to taper down yet. Could it be linked partially to temperature?? I know I respond rather quickly to cold food! Meanwhile will take up Kegel exercises again. Thanks for the tip.
No UTI that I am aware of thank you PMRpro - it would have been going on and off for a while! I do feel the cold and more so since my skin has thinned on the pred perhaps.
I also have issues with bladder leaking. I think it could be PMR and Pred related . I also think certain foods make it worse. S ome days are worse than others. Im watching diet carefully but a few days ago had chocolate and carbonated water another time I had pumpkin pie which has lots of spice. needless to say there was no holding it in after that.
I JUST WANT TO THANK YOU FOR YOUR COURAGE IN BRINGING THIS CONDITION TO THE FORE AND SHARING IT WITH US. PLEASE NEVER APOLOGISE FOR TRYING TO HELP OTHERS AS WELL AS YOURSELF. I PRAY A SOLUTION WILL BE FOUND FOR YOU, FINGERS AND LEGS CROSSED. YOU ARE SO BRAVE, THANKYOU, KIND REGARDS , A FELLOW PMR SUFFERER.
What a lovely thing to write, thanks - I'm just cross and stubborn, and, only being diagnosed three months ago (GCA, actually, not PMR although I know they're linked, but I don't have pain just inflammation in left temporal region and aorta) I'm still finding my way around... and really want to get involved somehow in some research on this subject. Thjere just doesn't seem to be any...
There is a LOT of research across the world - much is underway but research in things like this takes a long time starting with getting finance. And THAT is the crux. No-one is going to make a fortune out of a set of illnesses that predominantly affect relatively small numbers of mainly women over 50 who are less likely to be big players in the economic situation.
How very true. I meant research into this particular problem, pace the fact my rheumatologist was completely unaware of any connection until I mentioned it ..says none of her other patients have said anything . and besides, overflow incontinence isn’t exactly a sexy subject
No, she is in Leeds, UK. I live in northern Italy and my guy is also a world name in the field - writes guidelines with Dasgupta and co - but like Sarah Mackie is the next generation, young enough to be our children! I've been a patient research partner with Sarah for several years now.
You are an astonishingly learned correspondent - I just fought my way through the Oxford piece, although one of my lives covers teaching, am not a medical academic in any way, want to become as knowledgeable as possible a patient Luddite, however...
I started doing science at 11, got to medical school and decided I didn't want to starve for 7 years! But stayed in medical science in various iterations - including translating medical reports in clinical trials and academic things from German to English. There's something to broaden one's medical knowledge
I’ll say. Humble thespian, myself, plus teaching, mediation and Funeral Celebrancy. Ironically, just out of hospital two months ago, was asked to conduct a funeral for someone whose brother has GCA.... weeks before, I’d never heard of the condition. Strangely diminishing world... how lucky to be in Italy and not in the fiasco of this country. But politics off limits here, I’m sure! x
It is certainly very pleasant living here which has always has a certain reputation for lunacy in politics and realise we look very very sane at present, what with the B-word and everything else. And yes - really not encouraged
I've been an RN for 40+ years. I had never heard of incontinence from Prednisone. Until it happened to me. Very similar to what you describe. I can be standing right next to the loo doing makeup or whatever, the urge comes, and I can't get my pants down fast enough to stay dry . When outside, I don't have urges or leaking until I'm nearly home, then every step is accompanied my leaking. I have also had bowl incontinence earlier on, eek! My GP had never heard of this as a side effect either. However, I managed to get off Prednisone for 2 months, and all incontinence went away. I had a flare of another AI condition, back on Prednisone, and thinking I should buy shares in Tena. Definitely no more zippered pants for me... Pullups all the way 😁
Thanks so much for that. I can just tell that the medical professionals, (certainly those I’ve met ), while not dismissing conversations on the topic, are sceptical, to say the least. It’s definitely ripe for investigation, but heaven knows how or when, and with what funding...
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