Sorry about this and if too personal I will remove immediately requested. It's just that I would like to know if anyone else has had a similar experience. We seem somehow able to discuss things on here we simply don't anywhere else, or I do at least. About three years prior to diagnosis and with piles( very minor ones I might add) I experienced an annoying itchiness which obviously led to wanting to relieve it. Occasionally one would slightly rupture when at the toilet, maybe a couple of times a year. About 2 weeks prior to final diagnosis everything was at its worst possible level re. pain, immobility with nothing working properly. This included restricted bowel movement and passing urine. I was getting ruptured piles bleeding most other days due to excessive need to strain. However, once on Prednisolone the itching stopped and within days the bowels were working better and I was able to pee properly. Within two weeks everything was normal and regular for my usual pattern of behavior save that I now was peeing for Britain every 30-60 minutes 2 hours after taking the pred.. This excessive urination lasted about half a day before it resumed a more normal pattern. Everything is now ticketyboo so no problems. Anyone else had anything similar. By the way, no itching and no piles now. Bliss. Now all of you know far more about me than any of you probably want. Sorry.
Haemorrhoids itching and Bowels.: Sorry about this... - PMRGCAuk
Haemorrhoids itching and Bowels.
Something in my drugs certainly suddenly made me want to wee much more. It hasn't completely gone off. Before you all send me to Urology I have been already. I have had a cystoscopy and the consultant could see nothing wrong.
Well, as I sit here with my morning tea contemplating your internal plumbing, it occurs to me I was the opposite. The Pred and calcium caused cystitis, sorted that with high fluid intake and reduced calcium dose. Then the blood vessel thinning caused haemorrhoids that mostly resolved as the dose dropped, though they’ll never be the same. Early high doses meant diarrhoea every morning so it wasn’t until the dose lowered that the real problems started. The weakening effects of the Pred on the pelvic floor and abdominal wall wreaked havoc on the bladder and bowels which then aggravated the piles. Cue some specific exercises and that helped the pelvic floor with a knock-on effect on function. Thinking about the excessive urination 2 hours post Pred, could it have been a glucose spike when it was at its peak blood level? High blood sugar can make one pee bucket and we all know what Pred does to blood sugar.
Sorry to upset your tea break Snazzy. I have blueberries with my greek yoghurt and sunflower seeds each morning. Great start. Bowel still not quite normal but what with tapering and all the other ones like apixaban, lanzaprole, calcium, D, folate, I'm not surprised it hasn't settled. Would be so happy to be off the lot.
I had very similar to you, Snazzy. Wish it was the opposite way round. Pelvic floor and bowel muscles were fine pre Pred - now they sag beyond taming, and despite daily sucking in exercises they remain stubborn. Maybe to do with general muscle wastage caused by Pred? Destruction of collagen, etc. And this after only 11 months !
I went to a physio who specialises in pelvic health. She made me work particularly on my lower abdominal muscles because they were so slack that my pelvic floor was having to do all the work. Another aspect to the issue was that unbeknown to me, I had forgotten to engage these muscles, not just the pelvic floor but the abdominals and the hips. Previously I was very fit so I was appalled once I was recalibrated to knowing again what normal was. I was way out. So as well as the sucking up muscles and those ones needed not to pass wind in a library I was given exercises for the rest too. This made a huge difference but I if slack off for a week or two, I really notice it.
we are back to doing exercises aren't we. Just like I'm trying to do do from the feet up we need to move onto hips and lowertorso and then upper torso. Any ideas to help would be appreciated and I'll incorporate them in my recovery program .cheers
That's interesting to know. Never thought about my lower abdominals at all. I'll have to look into that. Thanks Snazzy.
This is a link to one of the YouTube videos my physio does. It happens to be about the pelvic floor but will provide an in to all the other videos for the abdominal exercises. youtu.be/oeInGYVLf8I
thanks snazzy. Plumbing and arrangements may be different for me but I always noticed that bowel movements were much improved after a decent cycle ride. There is a lot of core strength needed in cycling and it must elp to keep that area functioning well. Given that I've no been on a bike for 10 months that will go some way to explain why things are not working as well. I'll incorporate this into next session.
I hope your cycling shorts are well padded! I sympathise, pain relief for RA causes constipation with causes bleeding and small piles which hurt and itch. Constipation always leads to interstitial cystitis and a flare or lichen sclerosis so the whole bladder and bowl feels really inflamed and sore. A good portion of blue berries a day helps the constipation, steroid cream for the LS but I’ve found nothing for IC …. It’s a constant cycle (no pun intended) and the anal pain and blood quite scary. I hate talking about it too 😩
yes they are not cycling yet but hoping soon. results will be shocking though.
I should add the blueberries should be eaten not applied 😜
🤣 yes I use blueberries too with breakfast. Can't say I've noticed any difference with the plumbing but haemorrhoids have got worse since having pmr. They're a flaming nuisance, so uncomfortable.
😂😂😂😂😂
Good that you're back to normal now. Hope it stays that way for you.
The pred has possibly reduced the inflammation in the haemorrhoids - making them smaller and less likely to bleed. Topical steroid creams are part of management of the problem and sometimes rectally applied versions which are only available on prescription.
It has been noted that pred can result in a rapid, striking and persistent diuretic effect in patients whith congestive heart failure where diuretics are no longer effective. Pred tends to make you retain fluid over the day, so it is logical that you might see a rapid diuretic effect when it is at its peak in the blood.
Don’t be sorry. You are right this is a safe space where we can share the weirdness of this disease and it’s treatment- in particular Pred. Your doctors just treat everything as if it is isolated and yet we know everything is joined up and the body is still doing it’s level best to put things right.I had chronic psoriasis, in my ears, for years, no ear wax. This has quietly, completely healed up and rectified itself. Who says that steroids don’t cure anything?
that's brilliant for you. I'm finding that some things which I knew were not working well or properly are going back to how they should behave and did maybe 40 years earlier. That's actually quite exciting as it implies we get a shot at putting things right and hopefully with our new and increased awareness we can help to keep these things going in the right direction. It really is a journey, and not all of it is bad. Thank you SJ.
That’s the entire point of the forum, and medical knowledge and practice.
We all appreciate this.
We all learn from one another’s questions- and it Amat answer another tangential question at the same time.
Our daughter has been recently diagnosed with lupus and diabetes insipidus ( can’t even spell it correctly yet according to Siri) so it made me wonder about this, although she is not on pred…
I'm a late person so I take my pred just before bed between 11.30 and 1.30 depending on day. If I take at 11.30 I usually wake at 3.30 for a pee. After 1am I can sleep through till 5am or even 6am. However, that varies, so I've just got used to a period of 3-5hrs good rest and then napping for what I need later. My body automatically wants to shut down for a nap early afternoon and sometimes late afternoon. Usually about 30 minutes. I have my second dose around 1-2pm so a nap is great and allows the pred to begin soon after.
Power napping it is called...............😉😉 If you say cat nap people associate that with age - a 'power nap' - leave that association to your imagination. 😈🍷
"Sleep for twenty minutes. This is what most people refer to when they refer to a "power nap", and is ideal for most people. In addition to the benefits of shorter naps, a power nap can help the brain rid itself of unnecessary information stored in short-term memory, and can also improve muscle memory. A power-nap captures the benefits of the first two of the five stages in the sleep cycle ..."
Extract from Wiki.
Cheers jinasc...so I'm alert. The world needs LERTS
I agree with PMRPro, prednisone with its anti inflammatory effect is likely to have reduced the size of the piles. Also, it can reduce inflammation in the kidneys and bowels. By reducing inflammation in the microvascular structures in the kidneys, its likely to have helped with your urination issues. And reducing small amount of inflammation in the gut lining (like in micro -colitis etc), it’s likely to have improved your blood getting to that area hence improving your bowels. A little bit of steroid goes a long way in some of us with ongoing inflammation. I glad things have improved for you.
thank you Sangu1. Apart from when it doesn't behave well it is quite interesting to discover how our body reacts and adapts to these stimuli.
I think they often forget how wide-ranging the effect of pred can be. My husband was recently started on low dose dexamethasone - and the problems it has solved need to have been experienced to believe it! I'd suspected there was an element of low grade inflammation involved in them all but the gut function and coughing is SOOOO much better. I've been asking for this for nearly 2 years ...
That must be such a relief for both of you. 🌻
It certainly is - and the local hospital had had him in for 11 days and done zilch. Just assumed this was a chronic deterioration so left him. Didn't even get him out of bed/order physio so he got even worse in some respects. Took a trip for 10 days to the palliative care unit in the regional capital to get a pint of blood and dexamethasone - and he is better now than for the last 20 months or more and he got the physio he needed so is now more mobile. We are so grateful to the palliative care nurse here who managed to arrange it. Covid has to have some of the blame for that but the right medical management was needed too.
The only downside is he is now eating 3 meals a day including a 3 course lunch!
I can relate. One of my first ever posts was entitled "weeing for Essex"! Mainly occurred when I was on doses of 15mg and over. I have IBS and over the years have had the occasional burst pile. I find that loo roll pays a big part in whether I get sore or itchy. Found the best loo roll to be Nicky from Home Bargains. Quilted and lotion enriched. The worst are supermarket own brands. It's like the difference between wiping with a Brillo pad or cotton puff! I also find that using a spray bottle helps reduce the soreness or itch as it lessens the amount of wiping
I find by far the best approach is to have thin or small fabric cloths and a bucket to put them in if you don't want to wash them individually - Napisan and a mini nappy bucket Never disintegrate and far more effective without wiping too hard.
That’s worth knowing 😀
I really sympathise with you. I've had different problems but the same area of the body...crazy noone can talk about it. One thing about pred is it eases certain symptoms but causes others. For me it totally eased me arthritis pains in knees and shoulders but as I came off the pred these recurred unfortunately and I've needed several joint replacements. I've been in tears on the loo trying to deal with the bowels and trying to evacuate. Not sure if pred was the cause...but eventually managing it all with combination of laxatives. I really hope your problems don't come back.... But if they do. ... Please share and ask here!!!! Good luck!
thanks roshough. It's strange what gets us talking isn't it. These things should be shared because sometimes we think it's just us and actually lots of others have this and find ways around. Sorry for your pain. The pred. took the inflammatory effects to my organs and enabled my gut to regularise. It may be that you still have some especially you are now off pred. and that is why you are having issues. Others might know. I certainly had weeks of difficulty and pain before medication.
Thanks cycli.... Since my joint surgery, thank the Lord...my pain is minimal, I can walk distances in the mountains again (I'm 71 btw) but the bowels still need "managing"...which at present I'm doing OK. I think as we age, especially if on pred long-term...things don't go back to the old normal. I've got 2 people I know well who've had rectal surgery and have not been satisfied.... Made things worse.....so I'm determined not to go down that route!!!
totally agree. Surgeons are so keen to cut and I have always been convinced that is LAST resort not FIRST which is always their default. Once it's gone it won't grow back. Trying hard to explore every option to help the body recover by assisting what our own immune and defense/repair systems offer is always my first line of action. That's why PMR/GCA are so destructive, because they turn these systems against themselves and make our normal approach to dealing with this so difficult. If your joints are beyond repair there's no option other than replacement, same with tumors or chronically diseased portions of the body. What we need is trust that the advice being given is patient centric rather than the specialists preference. From what I've read and experienced the specialists need scrutinising closely because far too many of them have egos and pet procedures which they pursue ahead of the patients interest.
Wow. An excellent post and introduced me to more things that I did not know about PMR and Pred. Yes, the bowel "thing" is a result of one of those; had surmised that it might be Pred but didn't realize that PMR affects ALL those muscles too. Have experienced the straining/constipation which occasionally reverts to a quick case of diarrhoea etc. That's why this Forum is so important where these things can be exposed and discussed. All along I had been blaming the Pred not realizing that the loss of muscular control was a result of PMR. Thank you for shedding some light.