Fourth time lucky? No, fourth time a "charm," me thinks!
I saw the GP AGAIN today (Yes, same guy... why let him off the hook?) for the fourth time in a week, but this time I was super-prepared!
ME: *forcefully placing a plastic bottle, in a zip lock bag, on his desk* "First of the day, clean catch, mid stream urine sample... I would like it to be cultured, please."
HIM: "Okay"
ME: *thinking to myself* "Wow, that was easy!"
ME: - Also, It may be a UTI, or a virus, or a "flare," but I feel crap... I would like a blood order, to check my white blood count, my ESR and my CRP."
HIM: "Okay, sure... lets also do a dip stick on this. *waiting, waiting, waiting* "Yes, there is still blood in your urine, although it now appears there is no infection present. Have you ever seen a Urologist?"
ME: "No."
HIM: "Well let's see what the culture says and we may need to refer you to a Urologist. There should not be blood in your urine.
ME: "Ummmm, Okay."
😳
Well, I'm calling this a "victory," because I got everything I asked for... although I am not sure I wanted a referral to a Urologist!!!!
As I've just said in my last reply to someone else - repeated UTIs (or their symptoms) DO require investigation. So yes, you DID want the referral! There I go again - mixing up want and need...
Yeah... you're right, I probably do. It's just that I'm racking up these "specialist," faster than I can learn how to spell their specialty! I now have a Rheumatologist, an Orthopaedic Surgeon, a Neurologist, a Cardiologist , and ENT guy, and soon a Urologist! WTF?
I realised at 3am this morning my other half had actually attempted to hide the wagon wheels. I could say he did it to stop me eating them and getting fat but I know he actually only hid them so I didn't eat his share as well!! Guess what? I did eat his and took my share back to bed!
Where's the prosecco party?!! Can we all come. I don't care what the hell it's over i just fancy the PROSECCO!! Seriously though you did need to see someone about the uti's preferably someone who can give you the right treatment without killing you. Maybe you wouldn't have blood in your urine if the bloody doctor had given you the right antibiotic in the first place!! Well done for being restrained because if I was in your shoes I would have lost it by now. Debbyx
GP is sending the sample to be cultured; he also did a dip stick test and said there was no sign of infection, just the blood! I asked for blood test today to look at white blood count, ESR & CRP... Oddly the blood (in urine) has been there at least since November 5th when I saw the Neurologist, but he just wrote a letter
to the GP (that arrived on the 19th) saying, re-do urine test. So I am not on any antibiotics, but have the one time sachet thingy should symptoms come back with a vengeance... at the moment I may have a virus, I may be having a flare, or I may have a UTI! WHO KNOWS?
I think I am off down to co-op for a bottle of prosecco!! Do you think it's too early? In my opinion prosecco is a great treatment for what ever it is you might/definitely/possibly have going on in your nether regions!! Our locum said i had white cells in my dip test the other day but didn't give any explanation on the possible causes. She just ordered cultures on a new specimen. When I looked it up on line it apparently can happen if we are fighting an infection somewhere else in the body! What a surprise! Hopefully you can get some answers to this and the right treatment this time. As someone else said earlier all this messing about can end up with the uti heading to your kidneys which you definitely don't need. Take care. Debbyx
Nah, GO, it's the perfect time! No crowds, more choice! And true, if you drink enough Prosecco you don't feel your nether regions!!!!!
Nobody take a holistic approach, it seems, everyone just looks at one or two individual symptoms... nobody tries to put the puzzle pieces together. Enjoy your Prosecco!!!!
Was thinking I would go in my pjs on grandsons scooter but realised I would actually have to propel the bloody thing myself so I am off down to shop on his electric buggy (he's outgrown it at 6 years old so it should suit me fine!!) WATCH OUT all dog walkers and children going to school there's a mad nanny on the hunt for alcohol and she's on pred!! Plus it's snowing here YAY
I am sure my neighbours could oblige with dodgy photographs of me doing something stupid. During the summer they discovered me in our pool fully dressed with a large glass of wine in hand, floating on a large blow up crocodile!! I must remember to sort out the low fence for next summer.
The very sad moment when you fall asleep on the bed at 7.30pm have woken up wondering why other half isnt getting 6 year old grandson ready for school and you realise the 3 hours you usually sleep all night is all already over at 10.30pm and all you have to look forward to is listening to the idiot next to you snore!! Oh some days I really hate my sodding life. No sleep means I will be downstairs half the night looking for food like a rabbid animal!!
Wow what if the results can back saying "no infection just drunk!!" Well they did say to drink lots with uti's. Its not our fault if they didn't specify!!
There's a cup thingy hole for a water bottle, I will just decent the prosecco into that. I could have a long straw and actually drink and drive at same time. I think lack of sleep might be affecting me more than I realised.
I agree, we're not well and our minds don't respond well to working things out on our own...... or even listening to advice....if we're that way inclined! Don't know if you're kidding but I love to hear your antics....
I am not very good at accepting advice/orders but I am brill at giving it!! with pred on board I am even more volatile. I admit to being a bit mad but love it if people find the things that happen in this mad house funny. My poor neighbours thought I was some sort of wierd stripagram for quite a while after they spotted my court clothes in my car. My husband was asked what I did as a job and then they refused to believe him!! I have been known to visit the co-op in my pjs on more than one occasion and sadly the staff there now think it's normal!! With pmr being so shitty we just need to laugh at things when we can.Debbyx
Hope you don't jail some innocent! Tesco have banned PJs and onesies - miserable lot. You're a great character - better than being miserable.....being on pred doesn't help - I'm always being asked if I'm okay? What a question to ask a pred head - how do I know!! Terri xxx
Never put anyone innocent in jail as far as I am aware but had the pleasure of putting some shit doctors on the dole!! Thing about pjs is some lounge pants are identical so if I wore them would they bar me? My youngest ditches her work clothes almost as soon as she walks through her front door and puts lounge pants on! As for asking how you are, in this house that question is likely to be met with something being thrown at their head!! Good job I am lousy at throwing!! We definitely should all laugh as much as possible because I think it makes the bad things in life a little easier to bare. Debbyx
Wow - some power there.... When I worked that was the first thing I did change into something casual and lounge pants are a favourite of mine....true some are identical to pjs. Actually they don't get away lightly with anything here......they always apologise afterwards as they know what's best for them! xx
My two have their own places so have decided to say stupid things to wind me up and then leg it back to theirs!! They do apologise but only from the safety of their own homes!! I have told my grandson that his mum and aunty are not too big for a smacked bottom over my knee which he thinks is hilarious. Debby
They did the same thing to me. At urologist I refused to submit to cystoscopy. I told them it was the pred. Sure enough, few months later on lower dose pred the blood was gone. Pred makes my bladder bleed. Rheumy said no. But I didn’t listen.
I’m not saying pred or pmr is causing your problems, I’m just recounting my own experience.
I had a massive uti this past summer which cleared up quickly with antibiotic. Haven’t had uti in 20 years—so I blame the pred. Or pmr, take your pick. Wishing you all the best!
I didn't refuse the cystoscopy - though to be fair I had had UTIs before - and the cystoscopy found that the same reason for the original ones had returned. PMR/pred contributed - but they weren't alone.
I wasn’t clear (per usual) in my previous post to you—I didn’t have a uti when I was on higher doses of pred. Just lots of blood in my urine. That’s when they sent me to the uro.
I did get a massive uti this past summer but that was after the blood cleared up; by then I had been on pred for 1 1/2 yrs, 6 mg. Here’s hoping you get yours all figured out quickly!
No. It’s just that a lot of patients here on the forum have talked about it. And it was true for me. As I got on the lower doses, it cleared up. A case study of one person: me!
They all say no...until last month when Prof said he did think it might be contributing..my jaw must have dropped! - he'll have forgotten he said that when I next see him.....
Well done you. Now, blood in urine...suggest checking also for albumin. This just to knock a kidney infection out of the way. Put up all the men and knock em down until you get a correct Dx.
By the way, do *not accept any of the fluoroquinolone antibiotics. The many side effects are leading to a virtual embargo on em. Just announced :- ema.europa.eu/en/news/disab...?
Disabling and potentially permanent side effects lead to suspension or restrictions of quinolone and fluoroquinolone antibiotics (more...)
Press release 16/11/2018
Particular reference to those on cortisone drugs :-
"Patients ... being treated with a corticosteroid are at higher risk of tendon damage. Concomitant treatment with a fluoroquinolone and a corticosteroid should be avoided."
Long list and excellent warnings *not to use - read the full recommendations, the whys and wherefores.
Thanks for reminding people - comes up every so often. I had 9 months on crutches when a GP mixed a quinolone with Medrol. Her resonse? "I've heard of it - but never seen it..." My response? "You have now!"
All I can say is - about b£**%^ time too. Keep them for emergencies.
Great and that’s an understatement. As to referral better get it checked. It’s dreadful we have fight to access the tests and treatment we need. Having said that. We have a new doctor, been with us 18 months. Ok, I forgive her the maternity leave she took for 9 months, it is worth the wait. (I did threaten to lock her in her consultanting room if she wasn’t returning to the practice.)
On Monday both himself and I had appointments with out newly returned doctor. She seemed to take it quite calmly, didn’t run screaming to her car. I went because of my painful hips and to discuss steroid reduction. I’m now going for X-ray and she agrees with the very slow reduction method as advised on this forum. Himself was a prescription review and to arrange echo cardio gram. All went well, she typed lots of things into the computer. I’m to attend my local hospital at my convenience, no paperwork required. Just say I’ve been referred. Himself had a phone call this afternoon, would it be convenient for him to attend tomorrow afternoon at either 1.15 or 2pm. Is this the NHS, yes, wonderful, long may it continue.
So doctor and hospital seem to be functioning well. Yesterday also had a NHS dental appointment. I broke a tooth while we were away in September. Fortunately not painful. Earliest appointment was 19 Nov. It seems because of earlier treatment to tooth, probably in the 70s, it can’t be crowned. My dentist of 35 years thinks he can ‘do something’ to preserve the tooth. So I now have two 45 min appointments and here’s the rub, the first one is not until 27 February, second, mid March. So tooth broken September, hopefully sorted March. Of course if in the meantime it gets worse and completely falls apart then I will have to have what’s left taken out. Any bets tooth will disintegrate over the festive period when the country grinds to a halt, or am I just being cynical.
He spent 15 mins drilling away and I quote, ‘A wedge shaped piece.’ and using what seemed to be an awful lot of amalgam, after fitting a collar around the tooth. I was expecting a smooth tooth. It doesn’t seem any better than it was before. I’m going to have to go back. Unfortunately I’ve now developed a cold. It all comes at once...
The other worrying outcome of the visit to our doctor is she is concerned OH is developing vascular dementia. Himself doesn’t seem to have taken that on board. Thinks it amusing he’s going for memory tests. The blood tests he takes as norm.
Oh gosh! It never rains but it pours. Life can be so cruel. Do you think he has the symptoms? Pred head at it’s worst made me think I had and worryingly the family all covered it up and pretended they were the same. Sign of things to come?
He does have some of the symptoms. They could be attributed to his other medical conditions. As the doctor said the confusion and lack of understanding at times could just be because he’s male! It could also be from the brain haemorrhage he suffered. He was incredibly healthy, apart from childhood polio, until he was in his late 50s. Then he had a heart attack, finished up with a heart valve replacement, after that a stroke, followed 10 years later by the brain haemorrhage. That was caused by a fall. He’s certainly had his money’s worth out of the NHS. As a family we’ve told him that’s enough. Anything else is just attention seeking.....bless him.
I´m chocked to hear you had amalgam put in, it is totally forbidden here in Denmark. You breath Mercury into your system 24/7 and that put pressure on your body. Hopefully it is only for a short while. good luck with everything.
I’ve most likely used the wrong word for the substance my dentist used. I know there is a problem with the old fillings and the use of mercury. I do have a lot of fillings, some very old. I’ve always maintained the calcium went to my nails and not my teeth! Spent too many hours in the dentists chair despite looking after my teeth.thank you for your good wishes, it hasn’t been a great week.
Ahhh, ok, found this; "The chemical properties of elemental mercury allow it to react with and bind together the silver/copper/tin alloy particles to form an amalgam. Dental amalgam fillings are also known as “silver fillings” because of their silver-like appearance.
Despite the name, "silver fillings" do contain elemental mercury.5 Dec 2017"
My innocent opinion is that Pred is harsh on all tender mucous membranes, digestive system, mouth,throat, bladder. I am much less troubled on a lower dose.
My story...I had a painful, 6+ month long episode of bladder issues last year as my sham rheumatologist forced me off prednisone (mere months after he diagnosed PMR). This has almost completely resolved since I went back to 6 or 7mg prednisone. My PMR was flaring back then, as well as the unbearable pain in the bladder. I had blood in the urine but no detectable infection. Instead of just treating my PMR, I got sent to a urologist for a barrage of expensive, and sometimes painful tests. Nothing was found, but taking 7mg prednisone and getting my PMR back under control fixed my bladder right away. Last summer as I tried to reduce below 5 1/2mg again, my bladder problems began to recur. I’m on 6 mg and it’s fine again.
We seem to have so many of these issues in common. PMRpro once posted she thought there were several different types of PMR/GCA, but I haven’t read what they are. Maybe we have the same type?? Good luck getting this bladder stuff under control...it’s a ferocious beast!
Hmmmmmm? Very interesting... it looks like I will follow in your path! I have reduced from 80 to 20and this is FIRST UTI I have had in 20-30 years... the blood is, as far as I know a totally new thing.
You do need to see one, at least to find the cause of blood in urine..... I had cystoscopy - they eliminated cancer - but no further forward in why so many UTIs. As you know I've done the rounds and am waiting to see Urology again....I've just had 6 days of antis - finished them Monday - today got a phone call from Practice Nurse saying culture has come back showing a different infection and the antis I'd had were not the correct ones - picked up another 'script, this time for 5 days. This UTI has affected my head more than usual - feel disorientated and blood pressure constantly raised, hope it improves now. You need to let them do what they recommend and hope they come up with an answer. I'd be interested to know why the blood. Mines been going on for two years in December.
Oh noooooooo, another infection!!!!! I'm so sorry!!!!! WTF? We need to get you back to 100% Telian!!!!! Drink, drink, drink,
...and yes, I know I need to know what is causing the blood, you're right of course! Like a said, just a wee pity party! It could be worse I could be FIGHTING To see a specialist!
Oh I know what you mean about the way they affect you - before I get the real bladder symptoms I get severely tired, irritable and cannot think straight. Not good when you are trying to work. Then the real bladder symptoms start and I think "oh thats what was wrong with me". Unfortunately its nearly a permanent state for months now - one infectin after the other!!! The infectin obviously goes through your system. The joys!!
Glad you are being referred! Need to fix whatever it is. And glad you saw it and went in the first place. ! A real pain I know but carry on!!! prosecco and aperol. now there's a joyful drink!
Hold on....Maybe, just MAYBE, this Urologist might be the, one person, who will actually listen to you. Remember that Hospitals/ Doctors, move in 'Mysterious Ways'. Coupled, with the fact, that he, appeared anyway, to listen to you.....
I know, but I was just 'Hoping' for you! I think that, in all probability, it's Back To that 'Mop & Bucket'. Though, ALL my fingers and toes, are Crossed, for you!
I understand about the Consultant collection. I have amassed a few in the last year. Rheumy, Orthopod, Oral Surgeon, urologist and the latest is a gastroenterologist!
I was at the hospital (private) last week seeing the new gastro to add him to my collection when I noticed that next door was my Orthopod and next to him my Rheumy! My goodness if the talked to each other that would be most interesting or terrifying my friend said bearing in mind it was me they would be discussing.
My uti turned out not to be a uti but a kidney stone stuck on a bend on its way to my bladder! So knowing that blood in urine can be that too, glad you seeing a urologist.
Going in for a gastroscopy next week to let the latest addition to the team poke about to see what he can find (other than Pred) that may be causing my latest round of inconveniences
We could all play consultant bingo, we both must have at least a line now xxx
Too funny! I wonder what they make of us, right? You and I (along with a few others) seem to be on SAME path! Weird. I have been referred to Gastro too, but no appt yet... we'll compare notes when we're done!
Well, that was a good response from your GP......sort of gives you a shock. Sorry you still have discomfort from your bladder. I can only reiterate the advice about trying Mannose......you have nothing to loose. Valerie
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xxx
One of the most frightening scenarios with GCA
STILL ON THE BED...MOSTLY..10TH WEEK
Do most of you take Omeprazole as well as Prednisolone?
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