A delicate question

I have not seen this mentioned anywhere but is anyone having bladder trouble? Since the onset of this deasease in December one of the first things to happen was incontinence, I took it that weak hands,arms and legs this was all part of it. Ok during the day but can't make it to the bedroom door before gravity takes over with my many night time forages to the bathroom. Since having the children pelvic floor excercises have been part of a daily routine. Mentioned it to my GP and the Dr. Rheumy both said hmmmm interesting! xxx

[jinasc]

PMR impairs the oxygen supply to ALL muscles.

So yes this can and does happen. Tena Lady must make a small fortune out of female sufferers.

You can help at night time by making your last drink about 2 hours before retiring and then make sure you sit with your feet up for those last two hours.

[Hidden in reply to jinasc]

My last drink is 7pm. I don't go much during the day my body is saving it up for me! xxx

[Hidden]

I think it has been mentioned a few times. I believe pred and calcium might irritate the bladder etc. As someone who already had diabetes the pred pushed up my blood sugar and I was up 5 or 6 times a night. I am down to 8mg pred and it has improved. I was in the shower in the night and bought new bedding. Nightmare. Join the tena ladies....my neices name for me!!

[SnazzyD]

Hello, I thought I’d lost my pelvic floor for ever after starting Pred, but as the dose has come down the tone has improved along with tone of my other muscles. I have also learned that high dose calcium irritates the bladder in me as does the Pred. Halving the calcium but having it more often has helped and the lower the Pred has got the better the less irritation. Might be worth checking for infection just in case as Pred can predispose you to infections.

[Telian in reply to SnazzyD]

I'm interested in the high dose calcium irritating the bladder - I've had loads of investigations with Urology, Gynaecology, Dermatology and Vulvodynia clinic and none have come up with a solution, Rheumy say it isn't them, Urology have advised no caffeine, fizzy drinks or citrus fruits. When I don't have an infection I still have the irritation. It's never been mentioned about calcium but I'm going to try halving and spreading the dose as you have, I hope it works I'm at my wits end..thank you in anticipation!

[HeronNS in reply to Telian]

If you are taking calcium supplements it should never be taken in doses larger than about 400 mg. You can take a couple of those a day, although of course not with pred. Adding Vitamin K2 (not K1) helps, along with D3 and magnesium, to absorb the calcium properly. A function of K2 is to direct calcium into the bones, something D can't do. This helps avoid problems with calcium settling in places where it's not wanted. Some forms of calcium are more easily absorbed than others. Many people find calcium carbonate hard to digest but it's cheap hence the most available. Calcium citrate is considered more easy to absorb and less likely to cause digestive upset. I have been taking calcium hydroxyapatite because I read it was better absorbed by people on pred, but I do from time to time ease the pressure on my pocket book and revert to calcium citrate. I take a Vitamin K2 supplement.

I should add that many are of the mind that we get quite a lot of calcium in the diet so not to overdo the calcium supplementation. Rather, make sure you are getting enough of those other micronutrients which enable the body to actually use the calcium.

[Telian in reply to HeronNS]

I'm taking a combined calcium of 600mg with 400iu vit d, should I be changing that for separate calcium (citrate I would choose) of a lower dose ie 400mg twice a day morning and evening? or can it be taken throughout the day as I take pred in the morning? and then a supplement of vit d, and K2 separately. Think docs thought it was easier to take just one tablet for all but that's okay if it doesn't cause problems. I am confused but getting there - I'll need to speak to pharmacy in the first instance - as long as I'm taking the correct supplements...and I get some relief.

Thank you HeronNS

[HeronNS in reply to Telian]

I have been of the understanding that no more than 500 mg should be taken at one time, and this article seems to support that, so a 400 mg supplement would work. I've just checked what I take, twice a day, and it's only 250 or 300 per dose, depending which one I'm taking, but they also include a load of other bone friendly nutrients.

ods.od.nih.gov/Factsheets/C...

Even with pred interfering somewhat with our metabolism of calcium I think it's unlikely with a good diet and a reasonable supplement you would ever have a deficiency. The daily recommended intake does include food sources. I went to an osteoporosis workshop at my local hospital a couple of years ago and there we were told to make sure we had good Vitamin D supplementation, they weren't concerned about calcium (but also weren't mentioning pred) and didn't know about K2. If you've been supplementing with calcium and not also getting extra magnesium that balance could have been upset so a little extra magnesium, even in the form of Epsom salts bath or footbath soak, will not go amiss. Best not to take magnesium supplement (capsules or pills) at same time as calcium (or pred) as calcium takes precedence over magnesium and will interfere with its absorption. If, on the other hand, your current calcium supplement has included magnesium that should have maintained the correct balance.

[Telian in reply to HeronNS]

Wow, what good information, I need to get more fluent with it in my mind then I'm all set, sounds like a little tweaking's needed with my current meds but thank you so much, can't wait to make the amendments. Am giving my 600mg calcium a miss tonight as uncomfortable and going out for dinner with friends - can't tell you how much this means to me and grateful to SnazzyD for setting me on this road in the first instance, I would never have got this anywhere else - great information all round.

[HeronNS in reply to Telian]

Oh, regarding taking vitamins with calcium, I haven't heard there's any problem with that. Calcium will fight with other minerals, people taking strontium, for example, have to take it at a separate time from calcium, ditto iron and magnesium. But if anyone hears of contraindication with any of the vitamins I'd like to know.

[SnazzyD in reply to Telian]

When I say high doses, I mean just tablets rather than food source. I have to halve the tablets and have one of them a day. For me half a tablet twice a day is still too much. It also takes a day or more to wear off fully. I’ve never had problems with any of the foods mentioned.

[Telian in reply to SnazzyD]

It is the tablets I'm talking about, I'm taking Accrete D3, it contains 600mg Calcium + 400iu Colicalciferol, vit D. Don't know about doses and if there's a lower one. I've only ever taken this dose - used to take Ad-cal chewable, which began to affect my gums so was changed to sugar free which was only in effervescent form and initially was okay but then started to make me sick - so this is the equivalent and my Oncologist says it has the same content as Ad-cal so happy for me to take it and is easier to take.

I've been struggling with the urinary problems for nearly two years, so need to check if it coincides with the change, willing to try anything. Can't believe high dose calcium hasn't been mentioned as a possible cause - it might not be the answer but worth a try. You still take the full dose in two lots, but if it takes a day to wear off then you must never be discomfort free as the next day it's due again. Wonder if alternate days is acceptable!

I'm going to discuss it with my Oncologist as only saw him last Friday about this - can't tell you how grateful/hopeful I am...fingers crossed.

[SnazzyD in reply to Telian]

I have to halve a 400mg and I take it once a day or the symptoms come back. I am also concerned about kidney stones and too much calcium floating about that might be an issue with the heart or blood vessels. So I take the supplement and calcium rich diet and Vit D & K. I’ll put money on the oncologist not knowing about it. Unless 100’s of people present with a problem for which they have found the direct cause, it never gets on the list. For it to make it onto the official side effects list means it either has to be seen widely in trials or docs have to report it and that is rare in itself. I mentioned it to one Rheumatologist and they immediately said it couldn’t be without hesitation; didn’t even stop to think. In my view is because it didn’t fit in with their medical world order and I, just another silly patient looking for problems. Jaded, me?

I also found Pred an irritant until I got under 20mg (I think). Keeping my wee dilute helps and of course a strengthening pelvic floor with lower doses of Pred.

[Telian in reply to SnazzyD]

Thank you so much for this, again rheumy don't think it's them either! - so frustrating - I'm on 5mg pred. On Friday I saw the Oncologist, he called the clinic the 'trouble clinic', patients having trouble taking their treatment. He says 15% of his patients have some sort of problem with their cancer treatments - but none as bad as you and laughed - don't think it's a ha ha funny..he is so lovely though - is trying to help all he can! I WILL speak to him re the calcium though.

I agree with everything you say except the silly patient bit, that you're not!

[SnazzyD in reply to Telian]

They said to me about my cancer treatments but over the years talking to others, it turned out not to be the case; I was not unusual.

[Telian in reply to SnazzyD]

Thank you SnazzyD for alerting me to all of this, I am really grateful.

[SnazzyD]

Another thing, the more salt I have consumed during the day, the more i pee at night, and if it’s hot weather during the day it’s a double whammy.

[Telian in reply to SnazzyD]

I don't have added salt, they gave me Betmiga 50mg (mirabegron) for urgency, it worked for that - I've got the chronic discomfort like cystitis even without infection.......

[SnazzyD in reply to Telian]

I meant even non added salt eg. Stock cubes and salt added during manufacture. It made for a very gastronomically boring 8 months. It’s not so bad on lower doses but I still have to be careful.

[PMRpro Ambassador]

I mentioned it to Sarah Mackie in Leeds because it had been discussed a lot on the forums at the time - and she then asked patients at her clinics. Yes, loads of them had similar problems. We used to joke we should have taken out shares in Tena or asked them to sponsor the charity!!!

Both PMR and pred seem to encourage irritable bladder and calcium can cause grit (rather than stones). And the weak muscles seem to sometimes result in the bladder not emptying properly - and that can lead to increased UTIs which may or may not register on the rather pathetic dip sticks so many GPs rely on! (They have been shown to be unreliable).

I've actually only once had a real near miss at night - mostly it is stress incontinence (coughing or sneezing especially). But it started long before PMR was diagnosed - so it is a PMR thing as much as anything else. I used Tena for a long time - and slowly it improved to the stage where I have them in the drawer but don't use them 99% of the time.

Pred increases nocturia in some people but I've been luckier than most with that. It is definitely worse if I develop fluid retention during the day - and reducing carbs and salt in the diet does seem to help that.

When you google it there are suggestions that some foods make it worse. There is also medication for irritable bladder which may help. Requesting a referral to the incontinence nurse may also provide some help if it is really a big problem.

[Hindags]

One thing I noticed is that drinking any form of citrus tea caused bladder irritation and urgent urination when I was taking higher doses of Pred. When I switched to camomile it was much better.

[Hidden in reply to Hindags]

I had to stop dandelion tea years ago which is known as a diuretic.

[Hidden in reply to Hindags]

Oh goodness Hindags isn't this torture enough!

[Mike1964 in reply to Hidden]

Lol

[PMRpro Ambassador in reply to Hidden]

After I had Daughter No 2 by c-section in Germany, on day 3 they took out the drips and I was told (as if this was a great event) that I could now have something to drink. "Tea" I said, "black with milk..." Oh no - I couldn't have that, which did I want, camomile or peppermint?" "Pass - water's fine!"

Apparently drinking a cup of proper tea after having a baby would make me sick.

One is left to wonder how the British survive.

[Hidden in reply to PMRpro]

Having babies in 1976 and 1978 it was the tradition in the maternity hospital to have proper tea in a teapot served on a tray with china cups when all was finished and baby was taken off to the nursery to give mum a well earned rest. I wonder if they still do it?

[PMRpro Ambassador in reply to Hidden]

They probably get a cup of tea (if they drink it that is) but I bet it isnlt out of a teapot or in china! Neither of my daughters ever use a teapot. Until I arrive that is...

[HeronNS in reply to PMRpro]

I've given up the teapot myself - too hard to get the strength just right. Use a tea strainer in a mug. ☕

[PMRpro Ambassador in reply to HeronNS]

No - leave a Tetleys t-bag in our pot for 10 mins and it's about right...

[Mike1964 in reply to Hidden]

Almost, they now send mum and new born home with a takeaway coffee in a polystyrene cup, apparently if you can do it within the first 10 minutes it helps with bonding (Or at the very least it helps with the NHS targets!)

[HeronNS in reply to Mike1964]

What helps with the bonding, awful coffee in styrofoam, or going home immediately after giving birth... ? Why not a home delivery, then?

[PMRpro Ambassador in reply to HeronNS]

Maybe using Deliveroo would save the NHS money too?

[Hidden in reply to PMRpro]

And it would prevent a weak bladder 😁

[HeronNS in reply to PMRpro]

Whats Deliveroo?

[PMRpro Ambassador in reply to HeronNS]

An online food ordering company - en.wikipedia.org/wiki/Deliv...

[HeronNS in reply to PMRpro]

Ah. Like Skip the Dishes!

[HeronNS in reply to HeronNS]

Actually Deliveroo made me think of kangaroos, not food....

[PMRpro Ambassador in reply to HeronNS]

It did me after I'd put it - it was deliver that brought it to mind originally though

[HeronNS in reply to PMRpro]

I pictured a travelling baby delivery van. Whether it was actually delivering babies, or delivering midwives to assist with home births I leave you to imagine.

[PMRpro Ambassador in reply to HeronNS]

Makes a change from under the gooseberry bush...

[HeronNS in reply to PMRpro]

Oh, here it's the cabbage patch. Although the usual method is a sling carried in the beak of a stork. I don't think we have storks....

[PMRpro Ambassador in reply to HeronNS]

Storks here - and to announce the new arrival they have a cardboard stork on the balcony with appropriately coloured balloons.

[SnazzyD in reply to Hidden]

And you could stand a spoon in it!

[SnazzyD in reply to SnazzyD]

Hmm, my comment looks out of context thanks to the app’s ordering. I was referring to the tea pot in hospital.

[SheffieldJane]

Yes definitely,I have a more sensitive bladder and seem to be prone to UTIs . I think that chewable Adcal ( vit D and Calcium) was exacerbating the situation too. It is gritty and irritates the bladder and can make you prone to infection. I also suspect that it might be a Prednisalone side effect. My GP is only really interested in the fact that I am a post menopausal woman and we are apparently prone to this sort of thing. I would see your GP about it though, an unchecked infection can spread to your kidneys.

[Hindags in reply to SheffieldJane]

Years ago I found high doses of calcium citrate compromised my kidney function which got better when I switched to calcium carbonate. Since PMR I've been taking calcium citrate at a lower dose and seem to be ok.

[Chrissy1953]

That explains why I had to cross my legs with laughter when hubby nearly fell in grandchildrens pool whilst filling it. Just managed to rescue him as his head and sun hat disappeared under water . Oh dear ... Talk about a little bit of wee escaping. But I laughed and laughed. Poor hubby

[Pongo13]

I have bladder probs. Started about five years ago. Now take medication daily. Have found with pred that additional need of amitryptiline on occasional nights when I can't sleep helps further reduce night time loo visits. Have cut out caffeine. Do not drink alcohol. No drink after 7pm. Tena lady is my best friend. (Pre bladder meds I had to go to loo every 15 mins through the night).

[Hidden in reply to Pongo13]

Every 15 minutes, well I'm not complaining then just 3/4 times a night! I've noticed that Aldi have increased their shelf space for incontinence pads surely not down to me!! xxx

[Pongo13 in reply to Hidden]

I must get along to aldi!

[Pongo13]

Ps dr said I had a "waking bladder" too. Amitryptiline has helped re educate to a certain extent.

[S4ndy]

Yep, Tena Lady my best friend My GP suggested it was a Pred side effect interstitial cystitis I think she said. It has got better as I have lowered my dose.