Bladder pain

[pammy_hyland]

Hi does anybody else have bladder pain ? Apparently it's common with our type of disorder .

[Celtic PMRGCAuk volunteer]

pammy, although frequency and urgency has been mentioned on the various PMR forums over the years, especially in the early days of the disease and treatment, I haven't noticed actual bladder pain being mentioned. If you haven't already done so, I think you would be wise to get this checked out with your doctor just to rule out anything untoward going on such as a simple urinary tract infection.

[pammy_hyland in reply to Celtic]

No been checked out for all that for about a year but read it is common with autoimmune conditions xx

[PMRpro Ambassador]

As Celtic says - how are you defining bladder pain?

[pammy_hyland in reply to PMRpro]

Burning type of pain xx

[Greensleeves in reply to pammy_hyland]

I've had this burning since the PMR diagnosis 5 years ago. Undergoing tests , have tried everything to no avail. Strangely antibiotics do stop it but they've caused kidney damage. It's like something irritates the urethra and it turns into full blown cystitis symptoms if it's not nipped in the bud .

I've thought it was menopause, or it's connected with PMR or Pred , but the urologist isn't going along with that idea and is still intent on stretching my bladder and tubes . I'll look at some other options. Good luck all . x

[pammy_hyland in reply to Greensleeves]

Well from all the people that have answered is say it is PMR linked as I suspected ! Which doesn't really help but it feels better to know and mire to me tion to my GP when I feel it's to bad to handle,Thank you for your answer it was very helpful xx

[Greensleeves in reply to pammy_hyland]

I'll be insistent with the urologist too . It doesn't help but at least we suspect it's PMR related. Take care xx

[Celtic PMRGCAuk volunteer]

Is it "burning" pain when you are passing urine? If it is, then an infection sounds the likely culprit.

[pammy_hyland]

No been tested for everything like that it was all negative! No it's actually when my bladder is full and goes away for a while after ! Xx

[PMRpro Ambassador in reply to pammy_hyland]

PMR itself can cause the symptoms of cystitis and so can pred. It is often called interstitial cystitis:

nhs.uk/Conditions/interstit...

[pammy_hyland in reply to PMRpro]

Yes thats exactly what I've self diagnosed myself with but thanks for confirming it. I will go to my GP armed with the Information I've printed off about it but felt it would be good to share of my on here for future reference for others xx

[Suzanne457 in reply to pammy_hyland]

Hi Pammy....I believe I have interstitial cystitis too. I think that you and PMRpro are right concerning the link to PMR . I self diagnosed by process of elimination also. I had many UTI type symptoms, for years but UTI's were always ruled out. A very knowledgeable Urologist who specializes in female urinary tract , bladder etc. problems did a Cystoscopy on me 2 months ago and discovered I had a VERY inflamed bladder....(fortunately, NO cancer which he had considered initially) The Dr. was puzzled when I mentioned that maybe the cause was due to the PMR that I have been struggling with 4 years. He gave me NO verbal response to that idea ! My bladder pain does come along during the emptying process and when bladder becomes very full. The bladder pain/ discomfort is often more harsh after the Pred takes effect systemically. Pred does seem to be an irritant to my bladder tissues. Pammy , do let us know about the results after you have your visit with the GP.

Just sending my personal thoughts along , to add to this discussion.

Wishing you good health....Suzanne

[Carrollee in reply to Suzanne457]

My friend has interstitial cystitis and I saw how she used to suffer so I really feel for you. However she now follows an oxalate free diet and very rarely has any problems now. Not an easy diet to follow but she says it's truly worth it to get her life back. All the best cc

[PMRpro Ambassador in reply to Carrollee]

A useful link for anyone who might be interested in this low oxalate approach:

kidneystones.uchicago.edu/h...

[PMRpro Ambassador in reply to Suzanne457]

I told Prof Sarah Mackie about it a few years ago - and she started to ask her PMR/GCA patients. Yes - many patients have bladder problems and she doesn't think it is coincidence.

[pammy_hyland in reply to PMRpro]

Thanks it does seem to be common xx

[S4ndy]

Hi Pammy, my GP diagnosed interstitial cystitis early on in my PMR journey. I find its helped by taking a cranberry extract supplement and making sure that I drink plenty of water in the morning when I have the steroids. I find that coffee makes it worse too so if I have coffee (bit if an addict) I have to drink plenty of water with it else the pain gets worse. I find its usually worse in the morning and goes away by evening. Just another little challenge

[Twopies]

Bladder pain and frequentcy has been horrible for me, especially the higher doses of pred. It gets better when I get below 7 mg

[pammy_hyland]

Hi Twopies ,Thanks for your input it's yet another organ that this horrible disorder affects ! I am on a maintenance dose of 5mgs as i have had PMR for 6-7 years.....Healing thoughts ,Pam xx

[66Mac]

Bladder pain , frequency and urgency have also been a major issue during the time I have been diagnosed with PMR and been on pred . I have an enlarged prostrate and have just had that re-bored which the urologist thought was causing me the above problems , alas 8 weeks post op nothing seems to have changed and I'm now wondering if this PMR and or preds were a contributory factor .

[Patience47 in reply to 66Mac]

66Mac, no prostate problems yet, but frequency has tripled since being on prednisone. Thankfully, no pain - just increased frequency. Hope you find out what's going on soon.

Good luck, Edward

[Ciar]

I have been having bladder issues for a few months that have worsened over the past month. Mostly urge/frequency, but often pain also. I've been tested for infection, but it has been negative. I've had PMR for almost a year it seems like all sorts of strange issues are popping up. Migraine headaches that improved 8 years ago are back. Spine problems are becoming symptomatic. I'm having terrible insomnia (had it before starting Prednisone). These things are still a problem even though my inflammation seems to be under control. Any idea why bladder problems happen with PMR?

[Carrollee]

Hi pammy

Did you see the reply from myself and the info/link sent by PMRpro regarding an oxalate free diet. It was an answer to someone else suffering the same but may not have got to you. All the best cc 🙆

[Linashjoe]

Yes it feels like bad cramps in your lower abdomen