Catheter with PMR/GCA: Attended urologist clinic... - PMRGCAuk

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Catheter with PMR/GCA

Jantayl profile image
22 Replies

Attended urologist clinic yesterday and discovered retaining water in bladder. Over past 6 months had difficulty passing urine- slow. Could this be caused by steroids? Diagnosed with PMR Nov 2017 then GCA Feb 2018 when upped to 60mg Pred along with the usual Omniprazole, Adcal and AA. Now down to 9mg Pred and seems to be ok - have throughout walked 6 miles daily. This latest news has really floored me and am apprehensive about the idea of catheter. Would I still be able to exercise - don’t know for how long as there must be an underlying reason for the difficulty.

Feeling stunned

Jantayl

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Jantayl
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22 Replies
SheffieldJane profile image
SheffieldJane

My bladder is behaving in a similar way. I feel intense irritation when I awake in the morning. I would be interested in any replies you receive. I have not have it investigated yet. We only have Pred in common as a drug. You look very fit - this has to help everything.

Jantayl profile image
Jantayl in reply to SheffieldJane

I keep trying. This photo was taken in France near Troyes. Just cycled 40 miles. Hope will be able to do this again. PMR has so many ups and downs. ‘Going with the flow’. As my husband would say

At hospital now. Just had blood to check kidney. Waiting for catheter training! Not sure will manage!

Thanks

Jantayl

SheffieldJane profile image
SheffieldJane in reply to Jantayl

Oh good luck Jantayl! I would be a complete baby about it I’m fairly sure!

in reply to Jantayl

Hi jantayl, as I understand it

Pred and calcium can effect waterworks. I have diabetes and some residual nerve damage from back surgery. I have been using the double void technique. Hope you are okay and that catheter empties the bladder fully.

medicalnewstoday.com/articl...

Jantayl profile image
Jantayl in reply to

It is small and have to keep in till appt with urologist. Bladder was too full and not emptying. Not sure if there may also be connection to MS diagnosed 20years ago but no symptoms

Jantayl

in reply to Jantayl

I have found it a weird feeling but if it helps at the moment that's good. I hope it's gets sorted, it would be a great shame if it's the MS. The last thing you or anyone needs is activity in both conditions. Fingers crossed it gets sorted. 🌻

Blearyeyed profile image
Blearyeyed in reply to Jantayl

That could definitely have a connection , as although it may not be MS , it would indicate that you are susceptible to conditions relating to the nerves involved in the process of bladder emptying.

It may mean some form of muscle relaxant medication and well as bladder muscle training for the future.

The steroids themselves obviously don't help with the situation but are only a small part of the jigsaw.

You are exercising alot so it is less likely that the surrounding abdominal muscles are responsible for laxity around the bladder area but the may be some core bladder urethra muscle strength lost and laxity in the tubes which can be a side effect from the change of collagen uptake that can happen on steroids.

I wrote below more about bladder links , but it certainly sounds more muscle nerve related than because of PMR or just because of Pred.

PMRpro profile image
PMRproAmbassador

The simple measure of double voiding may be enough to improve the situation and another treatment which has worked extremely well for me is a urethral stretch/dilatation.

medicalnewstoday.com/articl...

I first had the problem soon after my second daughter was born by c-section and, since I was in Germany, it was investigated very promptly!! The bladder wasn't emptying fully - and they decided it was because the urethra was narrower than usual. I've had the procedure repeated twice more, once in the UK and once here. It gives me about 10 years of comfort. I've never had pain relief for the procedure - Germany and here it is standard not to, but the poor nurses in day surgery in the UK were beside themselves when I told the urologist to just do it when he said we'd have to wait for an anaesthetist! I found it no worse than period pain (mine was bad) but it lasted just a few seconds each time. Worth asking about.

But no - I wouldn't necessarily blame the pred, in fact the PMR is a much more likely culprit. I had problems for the entire 5 years of PMR/no pred but once I started pred it was much better and anyway I had had problems years earlier. It is possible I had something autoimmune then - having earlier in my 20s had what would now be described as classic ME/CFS which lasted about 4 or 5 years.

Jantayl profile image
Jantayl in reply to PMRpro

Thank you for this. It really does help. Feels very similar

Jantayl

PMRpro profile image
PMRproAmbassador in reply to Jantayl

The chances are that, whatever anyone on here has, so has someone else!! What we always say: You are not alone

SnazzyD profile image
SnazzyD

Have you been given an explanation as to whether the problem being with the nerve signals or muscle function?

I’m presuming you’re needing intermittent self catheterisation? I’ve seen plenty of people lead normal lives with it.

Jantayl profile image
Jantayl in reply to SnazzyD

That’s what is being suggested. I am being kept in hospital overnight to monitor. Bladder still too full. Booked for scan on kidney. Still investigating cause of problems. Dr thinks it may have been longer term. Husband sent home to collect Meds

Jantayl

PMRpro profile image
PMRproAmbassador in reply to Jantayl

Oh joy - happened to me, the OH and our daughter all in the last few weeks (being at the hospital and kept that is)! Hope it works as well for you as it did for me and him! Daughter's is being rather more protracted ...

All the best

piglette profile image
piglette

A friend of mine used to cycle round the place with a catheter, he even showed it to me!! He seemed pretty active.

Blearyeyed profile image
Blearyeyed

Have they definitely told you that you have to have a catheter yet or given you the non invasive help yet?

There are various self care techniques and exercises that you can start with that help bladder emptying which you can learn .

I assume that you have already had the bladder emptying tests that have confirmed your diagnosis?

Ask the Urologist to refer / send you through to the Continence Clinic in your area that is linked to Urology services and teaches you the diet , exercise and lifestyle changes that can help you to get control of this issue before a catheter becomes necessary.

They are a service for all , used alot by people with all sorts of bladder continence issues in from Prostate to Neurology .

Knowing wether you bladder emptying issues come from reduced muscle strength around the bladder or the need for muscle relaxant medications also help.

You can , often , if caught early enough reduce ,or treat, these symptoms with a combo of exercise , prescribed supplements , medication, bladder techniques and diet changes so you don't need a catheter , or at least only need one for a short time.

There are various courses of drugs, based on their further examinations, that can assist greater bladder emptying control which ( dependent on the severity of your current symptoms) can bring this condition back on track before a catheter is required.

For the moment , have a look on the NHS website for Bladder Continence.

You can get a PDF for the appropriate Pelvic Floor exercise techniques for Bladder control which you can easily do just sitting in a chair through the day .

This is a lesson for all of us really. They are specific to Women or Men.

Another technique with bladder emptying advised by the Bladder and Bowel charity is to get in the habit of stopping urine flow mid stream and holding for a few moments then letting it flow again , and repeat , which helps promote the bladder to fully empty . It's a technique that should be kept up and helps over time.

Following a " Prostate style" Diet can also help improve bladder health.

The Bladder and Bowel Charity also have a free identity card that you can easily apply for , a sort of "free to wee" internationally recognised card , that allows you to get access to disabled toilets but also staff toilets in any place you visit , you just show them the card and they let you through. It helps give you confidence when out and about because you know you don't need to put off the urge or plan trips and reduce time out because you need to be near a toilet.

Anyone with health issues that require the access to a toilet quickly can apply for these , not just those with diagnosed Bladder and Bowel conditions.

In exercise terms , if you do need a catheter , you will need to be careful , to prevent any little injuries scratches in tissue which can cause infection.

There should be more advice for that if the time comes in terms of supportive clothing and appropriate moisturising and other techniques to use to still manage the walking you love.

Hope that helps , well done for having the confidence to talk about the issue with us.

That sort of confidence will help get you through this.

Good luck , keep us up to date xx

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

Bee - it is geting time for a book: The collected wisdom of Bee

Blearyeyed profile image
Blearyeyed in reply to PMRpro

I have to say that this info is totally down to the work of my wonderful uncle who helped me out for a fellow forum member with all the info he has built up over the years on bladder related issues and services in the UK .

For which he was very happily amused , in his own sick bed , by being given the title Professor Prostate!

He is recovering from major surgery for Pancreatic Cancer at the moment , and , believe it or not , being thought of as still useful in helping others really perked him up.

Hope anyone that reads this will give him a nod in their thoughts for his ongoing recovery.

Plus , I'm pretty sure you have a trilogy of books to get out there first!!😋😂😂😂😘

Big hugs , Brains , I hope your own recovery is going ok. xx

in reply to Blearyeyed

Nod. The start stop technique with the voiding has helped me. Its usually the night when I forget my routine!

Blearyeyed profile image
Blearyeyed in reply to

My family " assist" in me following the void technique , especially in the middle of the night, because of the amount of times they cause me to start to go , then realise they haven't changed the flipping toilet roll !😁😋😂😂😂

Thank goodness for all those years of religiously following the pelvic floor exercises after giving birth , best advice my Parisienne Great Aunt ever gave me.

in reply to Blearyeyed

I only have myself to blame for no loo roll....there usually one of the two loos that runs out at the wrong time.

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

Whipple? Has it worked? We have a colleague still here about 9 years post-Whipple and well in his 80s.

And yes, I can believe it. Wonderful man - he can compile an appropriate article. There are discussions about a patient-directed Q&A service with medical approval of the answers.

Blearyeyed profile image
Blearyeyed in reply to PMRpro

Unfortunately , the whole pancreas had to be removed , but they saved his spleen.

So sad after he had got back on his feet twice , once after a brain tumour , then after Two bouts of Prostate Cancer.

In the family he is known as ' The Stig' alla Top Gear , so the impact has been huge.

He can't even have a cup of tea without tablets because of the lack of insulin function , but he's still fighting.

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