UTI symptoms, could it be inflammation?

[Greensleeves]

Hi , I’ve constantly got a burning in the nether regions, soothed somewhat, by sitting in a shallow bath of baking soda . I hate having baths too , preferring a quick daily shower .

I’ve had this since I started PMR , I’ve had all the urology tests , countless , ridiculous amounts of antibiotics, HRT cream , anti fungal tablets. I know there’s an increase in UTI’s with PMR , but could it be inflammation.

I’m tempted to try 3 days of some large doses of Pred to see if it stops it .

I’m taking probiotics and I’ve never tested positive for thrush , but thought it a possibility after all the antibiotics. Also I dip samples and they’re clear .

I did read we can have embedded bacteria in the bladder that shows itself during stressful times . But I’m not sure about this . My instinct is it’s inflammation from polymyalgia.

[SnazzyD]

Do you mean the tube or the outside nethers? Don’t put up the dose of Pred without advice because any infection will love it. When you say you’ve never been positive for thrush, was that a swab from down below?

As I understand it PMR is a vasculitis that upset the flow of blood to muscle and parts of joints, not mucosal tissues.

Pred can cause like a chemical irritation which I got above about 10mg and also had it with calcium supplements above a certain dose.

[Greensleeves in reply to SnazzyD]

The tube Snazzy, they’ve said it’s dystrophy , you know menopause etc .

Yes have had swabs , always negative.

I won’t increase the pred . Maybe it’s that that’s causing it . I’m not taking any calcium.

Thank you for your insight . xx

[Coffeebeans in reply to Greensleeves]

Have they given you local oestrogen to help the atrophy? If it's hormonal that's what you need.

[Greensleeves in reply to Coffeebeans]

Hi Coffeebeans , yes I’ve got the Vagifem pessaries.

I’m using those too , after a long break. I think they take a while to take effect.

I am nervous about them to be honest , even though I know the oestrogen mostly remains localised .

I’ll persevere and along with D’Mannose get some relief.

Thank you for responding.

Enjoy your weekend xx

[Coffeebeans in reply to Greensleeves]

Oh good. I use them too and while they took a good 3 months to resolve current issues they are great. Tiny dose too. Have a good weekend

[Greensleeves in reply to Coffeebeans]

Good to know there’s a light at the end of the tunnel Coffee beans . Should hopefully have some relief in about 8 weeks then.

Thanks so much xx

[Viv54 in reply to Greensleeves]

Hi ,sounds horrible, my problem is dryness, may i ask what D,Mannose is ?TIA

[SnazzyD in reply to Greensleeves]

I had to drink gallons of water to avoid the Pred sting in the tube

[Greensleeves in reply to SnazzyD]

I’m drinking loads Snazzy . I’m just so thankful for all you lovely people who offer suggestions and understanding xx

[PMRpro Ambassador]

Both PMR and pred can lead to interstitial cystitis - and if you are on calcium carbonate supplements, they can cause cystitis symptoms by forming grit in the urine which then irritates the bladder and the urethra as the urine passes through.

And have you at any point tried using D-mannose? Sometimes the bacteria hide in the bladder wall and don't always figure even when urine cultures are done. The dip stix are notoriousfor missing signs of a UTI too. D-mannose flushes the bugs out of their lairs - it really is worth a try,

[Greensleeves in reply to PMRpro]

Ooh thank you PMRpro .

I did email them for advice , they advised to drink concentrated lemon barley and get on the D’Mannose powder . Super friendly people. Cynical old me thought how can that sugar supplement possibly help ?

I’ll be so happy to flush any lurking bugs out , I’ll get onto it now .

Thank you xx

[Telian in reply to PMRpro]

I Stopped the D-mannose out of desperation. It seemed it was constantly ‘driving’ out the bacteria I didn’t have - which never showed up in lab testing. My symptoms have eased since stopping it but not totally - more bearable. I’ve just been referred to an interstitial consultant and he’s lined up a concoction of two antibiotics and another muscle relaxant ( I already take Mirabegron) for 4 weeks. If they don’t work he wants to do another cystoscope while I’m asleep this time to check if the bladder lining is intact and if urethra needs stretching. I had a cystoscope a few weeks back which showed nothing untoward even though I had symptoms of a UTI. I’m convinced it’s what you say.

[Greensleeves in reply to Telian]

It’s horrible isn’t it Telian . I hope these antibiotics work for you.

I’ve been reading some urologists are doing “broth” tests on our urine and prescribing long term antibiotics to get rid of the embedded bacteria.

One is a professor James Lee Malone in London and another is Dr Catherine Anderson .

PMRpro has had successful dilation , without anaesthetic , I couldn’t imagine it, but I’d rather be awake than have a general anaesthetic.

We can get strictures or scar tissue in the urethra from repeated infection which will cause these awful symptoms too .

I just wonder why it all started alongside with the PMR and imagine everything being inflamed .

Do let me know how you get on . Best wishes and take care xx

[Telian in reply to Greensleeves]

I’ve been on strong antibiotics just at night and should have been short term, for 20 months - during that time they’ve been changed three times to try and kick start a better reaction as stopped working. I had dilation in 2008, so a problem before PMR but not as prolonged as now. Oestrogen is a recommended treatment for most but my cancer was oestrogen fuelled so a no no for me.

I follow the dietary recommendations too - nothing spicy, no caffeine or fizzy drinks etc...

I understand if it is interstitial that it’s incurable and can only be managed - another autoimmune illness? Still learning! I sympathise with everyone who suffers this way as, even without another illness,it can be so debilitating. Good luck and I truly hope you find something that works for you. 🌺

[Greensleeves in reply to Telian]

Thank you Telian , I am sorry , you have been through the wars with it all . Copious amounts of antibiotics are so draining too.

Maybe it is another unrecognised autoimmune illness ?

I know I’m constantly on edge with the discomfort.

A couple of weeks ago it was so painful I could have cried with it . My left kidney aches too , but it looks fine on scans .

The last urologist I saw wanted to give me a general anaesthetic and check it out with a gynaecologist.

I couldn’t face that due to a past bad experience.

I would agree if I was awake and maybe sedated , and numbed with local anaesthetic, but he wouldn’t.

Along with PMR it is debilitating, I keep everything to myself at home otherwise I feel like a negative person. Always say I’m fine .

I avoid anything that might aggravate it , no spicy or acidic foods .

Please let me know how you’re getting on with it .

Big hugs 🌹 xx

[Telian in reply to Greensleeves]

I agree with all you say. I’ve seen a gynaecologist too - he found syriingoma - benign tumours - but nothing that helped what we were hoping for. I’ve also been to a vulvadymia - spelling? clinic but not that either. Even though many are suffering these symptoms Rheumy will not say it’s anything to do with GCA/PMR or long term use of pred.

I shall only agree to mild sedation if I have to have another cystoscope.

You are brave suffering in silence. Get a referral to another Urologist who will do things your way. I find paracetamol eases the pain - they particularly help at night time.

I will let you know if this latest treatment helps at all. Love 🌺 x

[Greensleeves in reply to Telian]

Hi Telian they always find something but not necessarily the answers .

Yes please let do me know how this latest treatment helps you.

Sending you love 🌺 xx

[York54 in reply to Greensleeves]

I have had trouble like this and was prescribed vagifem for vaginal atrophy. Occasionally I use the Ovestin cream instead. It helped me such a lot. Hope you get some relief soon xx

[Greensleeves in reply to York54]

Thank you so much York . I’ve started using the vagifem again. I had to stop for a while as it was too painful. Hope it starts to work in a few weeks. Take care xx

[York54 in reply to Greensleeves]

I left off the vagifem foolishly and did get very sore. That’s when the Dr gave me the cream with applicator. It really helped then I returned to Vagifem. I felt like I constantly needed the loo much like cystitis but urine showed no infection.

[Greensleeves in reply to York54]

Ah thank you, yes it’s like a very painful case of cystitis without infection once it gets hold . The urethra becomes so swollen and painful you can’t use the Vagifem. I will look into the cream York . Once again thank you xx

[Viv54]

Hi ,dont worry about the reply , ive just been on DR Google , thanks anyway .

[Greensleeves in reply to Viv54]

It looks helpful Viv , it’s all worth trying. xx

[Rottsuzi]

Hi I have same problem no sign of infection but I do have pain in the kidneys and bladder feels full I’m currently waiting on ultrasound of kidneys and bladder.

[Greensleeves in reply to Rottsuzi]

Hi Suzi , I hope you get some answers and feel better soon . I understand that feeling, scans have always been okay . Once you’re in the system they’ll do uro dynamics and probably a cystoscopy and decide on treatments for you. Much of it is hit and miss . Does a course of antibiotics help even if there’s no sign of infection? xx

[Purplegloss in reply to Greensleeves]

I have had many years of what appeared to be UTI problems, but have now found out after many tests and an appointment with a Urologist that mine is caused by diverticulitis building up pressure on my bladder, which in turn causes inflammation in my bladder that feels like cystitis. Urine tests were usually clear with no sign of any infection, although I was quite often given antibiotics, and told to finish the course. What I now do is I have a standby prescription for an antibiotic called Ciprofloxacin, and as soon as a problem starts I take a tablet followed by about 2 more at the appropriate time, and it is sorted. This is always going to be an ongoing problem for me, but I take many less antibiotics per year than I used to, which is a step in the right direction. Also got Polymyalgia Rheumatica for the last 3 years, and currently on 6MG Pred/Lansoprozole and no calcium tablets.

[PMRpro Ambassador in reply to Purplegloss]

Watch out if you are regularly needing to use cipro and pred - any sign of pain or discomfort in your achilles tendon, get medical advice. The combo can increase the risk of tendonitis and when it is inflamed it is possible to do serious damage to the tendon. It can happen with either pred or cipro on their own, together it is worse.

[Greensleeves in reply to PMRpro]

My Mum is prescribed CIPRO almost monthly , she’s got a catheter and I’m absolutely convinced she had undiagnosed PMR and GCA . They always said she had fibromyalgia and frozen shoulders, and TMJ and migraines.

Her feet are turned outwards and in constant spasm and cramps . It is truly heartbreaking and difficult to accept. Her hands have gone from carpal tunnel to being completely twisted and one hand was almost amputated 2 years ago.

Of course the lockdown and loss of visitors has seen a huge deterioration. I can’t think of any way to help her now , she’s having TIA’s and completely dependent on carers . She was taken to the nursing home straight from hospital last March. Life is so unfair at times. Knowing the cipro is probably making things worse is very painful. xx

[PMRpro Ambassador in reply to Greensleeves]

Is she elderly? Obviously for you to be here she is likely to be over 70 at least but that is such a shame. But you are right- with that combination of symptoms, which spread it around when a single diagnosis would cover it all. Fibro and frozen shoulder in the same sentence should trigger thoughts of PMR.

[Greensleeves in reply to PMRpro]

She is 79 , it started in her 50’s and she looked everywhere for answers, but we’d never heard of PMR .

It’s only since my diagnosis that I’ve reached this conclusion .

Like rheumatologists , they’ve all got different opinions.

From Parkinson’s to vascular disease and TIA’s . It’s definitely not Parkinsons.

We’ve taken her to see private and NHS neurologists .

I’m in the process of a complaint , after she was found unresponsive in the nursing home and the A & E doctor said it was a panic attack in her sleep. I did say you wouldn’t be so condescending and blasé if she was your Mum .

I’ve sat massaging her head over the years when she’s had agonising migraines and a tender scalp and painful jaw .

She is the bravest person I know.

One neurologist agrees it was most likely originally PMR and GCA . xx

[PMRpro Ambassador in reply to Greensleeves]

You haven't tried a private rheumy?

[Greensleeves in reply to PMRpro]

No, darn it, we’ve had private neurologists and endocrinologists , but a Rheumatologist didn’t even enter my stupid head .

Thank you, I’ll get onto that first thing on Tuesday morning.

It’s amazing the difference fresh eyes make on a blinkered , stressful situation.

Thank you PMRpro , you lovely human xx

[PMRpro Ambassador in reply to Greensleeves]

Where are you? Maybe we can recommend a human one

[Greensleeves in reply to PMRpro]

Mum is in Birmingham, but when she’s “allowed out of jail “ , we will hire a wheelchair taxi and travel anywhere. xx

[Greensleeves in reply to Purplegloss]

Hi , Purplegloss , that’s an interesting cause for the symptoms.

You just wouldn’t think of that .

Are the antibiotics to stop a uti developing or for the diverticulitis?

Thank you for replying. I’m glad it’s under control at least. xx

[Purplegloss in reply to Greensleeves]

No it is not for diverticulitis, it is just used for when the inflammation occurs in my bladder due to pressure from what the urologist referred to as backlog in my bowel-his words!

[Greensleeves in reply to Purplegloss]

I understand, .....all our pelvic organs can be affected from one organ . You can look back , if you’ve had children, and remember the pressure of the babies on our bladders .

I expect you feel much better if you take Movicol or something similar. If everything is empty it must feel great . I had an awful upset stomach, a few months ago , it was like how I’d imagine colonic irrigation to be but much worse.

But on a positive note the burning went . xx

[PinkertonCat in reply to Purplegloss]

Cipro is contra indicated for prednisone.fda.gov/news-events/press-a...

[PMRpro Ambassador in reply to PinkertonCat]

I didn't realise the black box warnings were so severe! I knew about the tendonitis aspect having suffered from it myself but the others are even more scary!!!

[PinkertonCat in reply to PMRpro]

I have permanent neuropathy thanks to cipro, and I have an acquaintance who’s quality of life was destroyed. I can’t believe it is still being so broadly prescribed! Makes me crazy..

[PMRpro Ambassador in reply to PinkertonCat]

GPs have been TOLD it should not be used for banal infections and reserved for use where there is no alternative - and obviously ignore the warnings. At the time my GP said "I've never seen ..." It is so unusual for me not to check such things - it was a salutory reminder. And the risk isn't due to current mixing - a history of the medications is enough. The GP gave my husband cipro, last time he had pred was 26+ years during chemotherapy. Second day and he could feel the achilles tightening. Switched back to his usual abx and he was fine.

[maria40 in reply to PinkertonCat]

I still have shivery feelings five weeks after coming off it. First nitrofurantoin, then cipro made me feel like death. I'm allergic to penicillin and sulphonamides so I know there are only a few options but I would never take either of those again. I've since had my 2nd jab which probably hasn't helped.

[Rottsuzi in reply to Greensleeves]

Hi I’m hoping to get the ultrasound soon because my back is so sore and no antibiotics done nothing , so annoying.

[Greensleeves in reply to Rottsuzi]

Hope you get some answers Suzi and feel much better soon . xx

[Linny3]

I have used the supplement 'd-mannose' for burning and irritable bladder. (can be found at most health stores) It has helped a lot. Also I cut back on using the stone calcium supplements and that really helped. Now I only use an algae calcium.

[Greensleeves in reply to Linny3]

Thank you Linny xx

[Greensleeves in reply to Linny3]

I’m starting that D’Mannose Linny , glad it’s helping you xx

[Logic]

I have had burning that has progressed to terrible itching in that area that started as I tapered off prednisone and has continued even now I am off. Doctor gave me both cream and oral meds for a yeast infection that she said was probably caused by the prednisone. Neither has really helped. I am convinced she is right about prednisone causing it but going crazy because it won't go away

[Greensleeves in reply to Logic]

Oh no it sounds horrendous Logic , have you tried probiotics specifically for women’s areas , and cut out all sugar to starve the yeast infection?

You must feel at your wits end.

The Prednisilone may have lowered your immune system and given the yeast freedom to colonise . I hope your Doctor can give you something else . On Amazon when I was looking at the probiotics, I read about many people who couldn’t get rid of it apart from probiotics . I’d go back to your doctor. I do hope you feel better soon xx