Double Trouble : Those that can't do... RANT... - PMRGCAuk


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Double Trouble

Those that can't do... RANT!

Warning: The attached blog link, contains some questionable language and refers to subject matter that may be considered (by some) to be inappropriate, while (to others) it may be considered funny! Please note, although it is not directly related to PMR/GCA, it is related to dealing with other illnesses while struggling with PMR/GCA... and we all know... that sucks.

71 Replies
PMRpro profile image

As it wasn't me - it was funny-ish... But no, definitely not an amusing episode. And the language was totally understandable...

GWS xxx

in reply to PMRpro

I'll take "funny-ish," Thank you

...and "No," at the time, not at all amusing!

PMRpro profile image
PMRproAmbassador in reply to

The funny-ish was only because I had to cross my legs just to read it and I felt great guilt laughing ...

in reply to PMRpro

🤣 ....even better!

Oh you poor thing. You made it sound funny but it obviously wasn't, it sounded horrendous. I think you're right that need for a 'mummy' at times of illness never quite goes away does it. I do hope they get to the bottom of it soon so you get the right treatment and start to feel a lot better

in reply to Louisepenygraig

Thank you LPG! I appreciate your empathy.

Cairn profile image
Cairn in reply to

This was such a good read. My husband and I laughed as we have been going through a similar situation. I have been passing blood and so more investigations. Back in November it was a stoMach bleed. Discovered polyps. I have felt i for a year now and my Rhu

Y told me this is how it’s is for a little while. Ow S they are using high steroids and chemo as trying to save sight. Trouble. Currently uti has thrown bloods out. So was feeling a bit sorry for myself after so many set backs since diagnosis but your blog is enough to lift the spirits. Thank you cx

Oh mamici1, you poor dear soul. I'm so glad you went to A & E, gawd knows what may have happened if you hadn't gone.

Let's hope that the meds will work this time.

I don't know how you keep so cheerful.

in reply to Primarose

Thanks Primarose for reading my rants and your empathy! You notice I share my unfortunate, misadventures with all of you, right? .... because misery LOVES company! Cheers!

Primarose profile image
Primarose in reply to

I wouldn't call is misery, I'd say you need a bit of comfort and that's what this forum is all about. We feel for you.

I'm wishing you to get better soon .

in reply to Primarose


What can I say except with you at every painful moment, hope these antis work - there had to be more to it than just a UTI. Makes you wonder what’s happening to us all. Hubby was taken in as an emergency this week with urinary sepsis - he’s never had a UTI in his life and so poorly he is. In the next bed was a 20 year old in excruciating pain who had a UTI!

Our boy landed from Oz and went straight to hospital to visit his Dad.

Hope you’re feeling better soon and they’ve got the right diagnosis this time with the right antis! X

in reply to Telian

OH MY GOSH!!!! How awful for your Hubby and that poor boy in the next bed! I do hope Hubby is okay and how lovely your boy landed and went to visit his "Dad." Enjoy his visit! xxx

You do have a way with words! You can make me laugh and wince at the same time. Most of us will have felt something akin to what you were suffering, but that sounded really bad. Glad you're now feeling better. Pro is right best cross your legs when reading!

in reply to scats

Thanks Scats! Laughing while wincing is cool! ...and yes, keep those legs crossed!

scats profile image
scats in reply to

No choice, I'm in UTI territory myself at the moment, drinking water by the gallon!

in reply to scats

What the hell!!!!! Why are so many people getting UTIs?

What a horrible experience (although I did smile slightly at the imagery, I confess, but only cos it’s wasnt me..) . So glad you are feeling a bit better. x


Too true PL. It wouldn't be so funny if it weren't true (or if it was happening to YOU!

Cheers, xxxx

You are not alone!

However, my comparable experience is a few years past. One lovely Christmas I hosted 23 family members for a tremendous party. My sister—not wanting to miss the party— attended the shindig just barely recovered from a gastrointestinal virus. Needless to say, that was a terrible idea, as she not only shared Christmas cheer, but her illness as well. A couple of days after the gathering, I woke with vertigo, and a feeling that something was terribly wrong— like you, the toilet was my new best friend. And, also like you, I was simultaneously experiencing a UTI :( I was too ill to go to the doctor, and suffered through 'til the next day.

What I've come to learn about UTIs: 1. Once you have one, you're prone to many more, as your bladder lining is irritated and ripe for infection. (In the months that followed, I continued to get multiple infections, and eventually was on a maintenance dose of antibiotic to ward off further infections.) 2. There is barbaric procedure— involving metal rods— where they stretch your urethra (apparently scar tissue develops), which helps prevent bacteria from gathering. (I had it done **it was awful** but it seemed to help.)

Wishing you well!


PMRpro profile image
PMRproAmbassador in reply to Canygirl61

I have had the barbaric procedure done 3 times - the first time was shortly after having Baby No 2 - and I requested the other two investigations hoping for the procedure. The first time was in Germany, standard procedure no pain relief. So the second time, in the UK, after the cystoscope the urologist said he thought it would be a good idea to repeat it but we'd have to hang around to wait for an anaesthetist... "What for?" I asked - "no pain relief of any sort last time, just get on with it". I felt quite sorry for the nurses who couldn't believe anyone would and really did stand there with their legs crossed! I pointed out it lasts seconds each time and is far less awful than period pain which lasts for hours, days even. The third time, in Italy, the urologist didn't even mention it might hurt - just did it without warning so I did squeak!

However - I am of the opinion the effect is worth the pain :)

Canygirl61 profile image
Canygirl61 in reply to PMRpro

Horrible! After having a cystoscope, my urologist told me about the procedure and suggested I have it done right then— no time to decide, just went for it! And, no anesthetic either. I left the office feeling quite violated :|

in reply to Canygirl61

😢 Bummer. ...did it work, did it do what it was meant to do?

in reply to PMRpro

What is the name of this magical, but uncomfortable procedure?

PMRpro profile image
PMRproAmbassador in reply to

A urethral stretch/dilatation. The theory is that it allows the bladder to empty more completely. It's value is disputed - all I can say is that before I had repeated UTI symptoms, after I had the best part of 10 years of peace. I'm convinced.

in reply to Canygirl61

Wow! ...weird that you too had both a UTI and a gastro virus and at Christmas! Did you give your sister a piece f your mind? 😬 I'm afraid that what you say may be true, especially as I can't seem to "shake" this one! I do hope I am not more susceptible to them now.... oh my that would sooo suck! I guess we shall see! Thanks for sharing your story.

Oh you poor thing Melissa! I do feel for you and wish you well!xxx

in reply to stellafmdm

Thank you so much... I am thankfully on the mend! xxx

M, you are hilarious even in the face of pain & disaster. I have a question though. I’m wondering if all the Utis our members are experiencing could have anything to do with thinning skin. I remember my gyno telling me that it was easier for bacteria to invade other “places’” when the skin is thin (ie. after menopause in my case) or could it be the dreaded pred, which we know thins the skin?! Feel better!

PMRpro profile image
PMRproAmbassador in reply to Bronni

Or it could even be dryness "down there" due to sicca or Sjogren's syndrome

in reply to PMRpro

Hmmmm? Another good question.

in reply to Bronni

Wow! That is an interesting question! God knows my skin is paper thin!!!!! Thanks I'll try to do some research, thanks!

Valnvaughan profile image
Valnvaughan in reply to

That dryness is called vaginal atrophy by my GP and diagnosed for me after repeated UTIs......and treated with daily moisturising to this day. Valerie

in reply to Valnvaughan

Cool! Thank you!!! Kind of weird that we're all taking about our vaginal atrophy & dryness issues... but hey, I am nothing if not open and progressive! Cheers! xx

Is it Just normal moisturising/lubricating? Not hormone related? Thanks.

Just normal, unless GP says you need hormone content. Valerie

Blearyeyed profile image
Blearyeyed in reply to Bronni

Hormone levels can have an affect but like many conditions sometimes the cure you need for your worst condition can also be the cause of your other illnesses.

There is a possibility that the recurrent UTIs and other bladder and kidney related ailments are effected by the effect that long term steroid intake can have on your collagen production .

The connective tissue in the tubes and muscles around organs and joint can become more lax ( floppy ) with the reduction in collagen in cells. These weaknesses can cause the tubes to thin or narrow making the possibility of a slower flow of urine or urine remaining in the system after our bodies tell us we have finished urination . This can cause the increase in bacteria or virus that causes the different types of urinary , bladder and kidney infections.

There is also often an increase in blood sugars in people with conditions like PMR / GCA and more sugars in your urine basically feed the bad bacteria and can cause more fungal infections in the Gastric system too.

Reduced collagen in the system is also partly the cause of the fragility and dryness of the skin and the change in eye health , all of which rely on connective tissue which rely on healthy collagen levels to remain tight and strong. It is also partly the cause of the slower healing times for minor injuries or more bruising after blood tests or injections.

It is part of the reason that despite my increase in head related symptoms I cannot have an increase in steroids until the Consultants have decided wether a Connective Tissue Disorder is also partly the cause of my issues. With a faulty connective tissue production disorder use of steroids can make other conditions worse not better , when one is present this is when they usually try the other immuno suppressants and biologic drugs instead.

Bronni profile image
Bronni in reply to Blearyeyed

Really interesting. So the answer is not always take more pred! Hope you get good news soon 😕

Blearyeyed profile image
Blearyeyed in reply to Bronni

Well , the answer is , as we all know that taking the Pred long term as we need to for the most aggressive , life changing symptoms we have so we can have a close to normal lifestyle does have an impact on other parts of bodies and can cause some nasty side effects.

But the Pred is a necessary evil that with conditions like PMR and GCA we can't live without.

in reply to Blearyeyed


PMRpro profile image
PMRproAmbassador in reply to

This may also be worth trying:

It goes together with several situations that BEE has touched on - costs nothing and may well help.

in reply to PMRpro

Super, great article! Thank you!

Well, you never do things by halves. It sounds truly horrendous and very scary. You’ve had far more than you’re fair share of problems. It puts my recent X-ray results of osteoarthritis in my both my hips and spine and a broken tooth, (dentist can’t do anything about it until the end of February) into prospective. I pray 2019 is kind to you and to all the other wonderful people on this forum.

in reply to Jean56

Oh Jean... I pray that 2019 is kind to you too, and you get a tooth!!!! I for one will NOT be sad to see 2018 gone! xxx

Oh hell, not again poor you but you do have a wonderful way with words. Like everyone else read it with legs crossed and crying with laughter, wincing with the imagined pain etc. I do hope this latest antibiotic will kill off all the bugs and you feel much better very soon. All good wishes.

in reply to CT-5012

Thanks CT, It was painful...more painful than I remember anything being... However, I am happy it gave me something to "rant" about and had you crying with laughter!!!!! Good wishes back at ya!!!!

Goodness me, enough is enough isn`t it......Hope the Trimethoprim works, I`m sure I had that years ago, and it was good.....fingers crossed, and legs of course….keep us posted how you are......

in reply to Longtimer

Thanks LT, Yes, It (the trimethoprim) seems to be working and that fact that my face doesn't look like a blowfish is even better! Legs crossed!

Hi Mamici ,

So they finally put you on Trim with no ill effects I am really glad you have started to feel a little better after such a horrible time and hope it finally hits the nail on the head ( rather than through the thumb).

Trouble is the longer it lasts even if you get rid of the infection the longer it takes to recover from because of the trigger effect it has on the Fatigue and joint pain with the PMR.

Keep an eye on it and if after you finish this course of antibiotics it starts raging up bypass your useless GP and go straight to out of hours at AandE again , they from the last doctors notes will see that there is the possibility that because of the long period your UTI was untreated that it may have left a little nasty in your bladder or kidney and will give you the right antibiotic for that part of the body ( I got Keflex) .

Luckily though , it sounds like you won't need that and you are bouncing back in typical well written form in time for Christmas.

Take care and keep warm BEE x

PS : Bronni wondered about our recurrent UTIs and menopause and medications . I discussed this with the Rheumy at my consultation on Tuesday in relation to what they are looking for in me and so I told Bronni what they told me. You might find that interesting too and maybe like me be interested in taking a Collagen supplement at the moment. xx

in reply to Blearyeyed

Cheers Blearyeyed! Good advice! I too believe my GP let the original infection go totally unresolved for too long.... he and I will be having that discussion next week. Many thanks for your support. m xx

Melissa I wrote a reply in the comments bit. Then it wouldn’t allow me in. I’ve just spent twenty minutes trying to get into Wordpress and my post has of course disap! 😭😭😭😭. I feel so bad for you that you had that horrible experience. Beautifully written and descriptive to a superb degree. We all lived it with you xxx

in reply to Daisychain12

Sorry for your Wordpress trouble DC! Thank you for taking the time. And thank you for the kind words and compliments. I hope you are feeing better. M xxx

Dear Melissa - OMG !! what a really terrible experience - quite awful indeed but as usual you have managed to share with us in the most evocative way what was like to go through all that !! As I've said to you before it seems very 'unfair' that you seem to be near the top of the queue in terms of who is getting these 'extra' little nasties. I am at least pleased to hear you seem to have a good response to your latest meds and hopefully that will be an end to it - and altogether would be good !!

I am truly so sorry for you M - and hope this phase is all over really soon and that next year is MUCH MUCH 'kinder' ....

Love from us both


in reply to Rimmy

Awe thanks Rimmy! Yeah 😡 and if I meet the person who keeps putting my name at the top of that damn list, all hells gonna break loose!

The latest meds have not killed me or made my eyes swollen shut; but I'm not sure how they are doing as far as "kicking the infections butt," but we shall see...

Thank you, thank you, thank you...

Love to you both, Meliss xxxx

I'm glad and amazed that even that amount of pain can't overcome your wonderful sense of humour. I hope you feel better very soon and of course you still need your mum.

in reply to coda123

Thank you Coda. It was 3 full days before the story could be told and had I told it sooner you'd see tears in the text. And... like I say, if you don't laugh, you'll cry; which I did on Monday, Tuesday, Wednesday...

Oh you have just described my week!!!! Finally accepted that the reason I was falling asleep over my desk all week is because YES another UTI. I was DYING with the pain last night - thought my bladder was on fire. I just don't know what to do with them. ANOTHER antibiotic - thats all I am now - an antibiotic!! Hope you feel better!!

in reply to powerwalk

Ohhhhhhh noooooooo PW! Not you too????? What the hell is going on???? I'm so sorry!!!! I hope you feel better soon and shake it once and for all!!!!!

powerwalk profile image
powerwalk in reply to

I think that each time - I think the steroids are just making things worse. Best of luck to you too! I did enjoy your rant!!!

in reply to powerwalk

thank you.... means a lot to me!

I was just thinking of you yesterday and thought you must not be feeling well as you hadn't posted lately. Hope this issue is finally resolved for you. We all understand being sick of being sick ❤️

in reply to bunnymom

OMG I am soooooooo very sick, of being sick! After being told Monday by A&E I did have. UTI, I received call from GP saying culture (done at lab in hospital) was negative, I don't have a UTI! So why do I feel so crap?

Thank you for thinking of me and knowing I wasn't feeling well. You hit the nail on the head! Xxx

PMRpro profile image
PMRproAmbassador in reply to

That is just after a few days - sometimes it needs longer for the culture to grow. I'm sure there has been some work on that recently.

Flippin’ eck! Hope you feel better quickly . Best wishes.

Oh Melissa!! Been there with the UTI ending up in A&E- not a pleasant experience but to get gastro problems on top of that - well - you must be exhausted. For me I’m usually ( not always) ok with two things the PMR and GCA but start piling on the add ons and that makes life so difficult. Hope this antibiotic suits you and you will soon feel so much better. Do you take a probiotic after you’ve finished your antibiotics? Have you tried d- mannose as a natural way to prevent anymore UTIs? I know it doesn’t work for everyone but I have been taking the powder just a preventative measure every night after having quite a few UTIs and it has been very good for me.

I wish I hadn't found this funny ,I feel guilty laughing and yet admire your fortitude ,I have nothing to offer as advice .This is not something I am familiar with ,Just hope and pray you are feeling easier today. What a horrible experience my heart goes out to to you .If you can you need to get your doctor to do all the tests he can to get to the source of this .

Good old trimethoprim! That's what my Mum was always prescribed for hers and what my mother in law took regularly - however she thought it was for her blood pressure and took it for years!!! Heaven only knows why the doc kept prescribing it for her!!!

Sorry for my late reply Melissa, but when i read your latest blog I couldn't help but think, "Can't the health care system over there respond effectively to a UTI????" Not rocket science (although I do recognize that you had a reaction to two of the medications they prescribed). You must be so fed up hon, I certainly would be! Here's hoping the last visit and medication is the charm.

Only had one UTI in my lifetime, and it was SO painful. Lots of great suggestions by other members. Hoping you get some relief, and by the time this message gets to you the medication has already kicked in with some positive results.

I see you humour is still in tact, which is oh so helpful. What an inspiration you are. Hang in there and hope the holidays are brighter and better moving forward. Take good care.

in reply to PMRCanada

Sorry for my late response!!!! My UTI morphed into a killer gastrointestinal virus and nearly did kill me! I didn’t eat for 14 days and was prescribed real pain killers and anti spasm meds! The good news.... I was amongst the living by Christmas Day and able to eat real food! 👏🏻 Yes Virginia there is a Santa Claus! Happy new year PMRC xxxx ❤️

Hi, I just wanted to say how much I have enjoyed and relate to your writing and so many aspects of your blog.

Also screaming FML in Brighton!

Michaela :)

in reply to Mic67

Awe... thank you so very much! ❤️

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