It's a while since I posted an update but I do read others every day which, together with responses, usually answer any concerns I may have had.
I have been very fortunate in still being pain free whilst on the Pred starting on 15mg and I am now tapering, slowly, down by 1mg per month and now on 7mg.
My Doctor has been very good sending me for blood tests for various things, one showed I was low on Iron so taking Ferous Fumerate tablet. She also sent me for 3 separate scans in the last 3 Weeks, a lower pelvic scan, camera scan (womb area) and a cystoscopy! with nothing unforeseen reported. However since having these tests I developed a urinary infection and was prescribed antibiotics for 3 days. These didn't remedy my problem and Doc then prescribed a further 3 days which ended last Friday. By Monday this week same problem so back to Doctors this morning and was prescribed more antibiotics for 7 days this time so I am living in hope that they work this time.
Has anyone else had same problem?
One other thing, when tapering down on the Preds how does it show if my Adrenals are kicking in. (hope this isn't a silly question).
My thanks to the many experts who take time to answer our concerns.
Was an infection actually confirmed? I remember someone posted a few months ago that lots of PMR sufferers appear to have repeated urinary infections, but it turns out they don't really, it's something else, not an infection. Sorry I don't have the details and can't remember where or when this was posted.
I had frequency some pain etc but no infection doc thought it could be the pred irritating my bladder. Lots of water to drink and have not had a problem since. Did your doc send a specimen to the lab? Best wishes hope you get thi s sorted soon.
Thank you all for your response HeronNS/CT2012 and Sheffield Jane. My Doctor agreed with me of the possibility of the "intrusive" tests I have had could be a course but he isn't my usual Doctor and is more abrupt at getting you on your way so I didn't ask any details of the type of infection. In the first instance a specimen was sent to the Lab which came back saying it was the correct antibiotic being prescribed. Another one was sent off yesterday so will await result and in the meantime can only hope that the next 7 days will sort it out.
I appreciate your comments I will take in more water and make sure I am within close proximity of a toilet (You will know what I mean!!) Have a good day.
I have also had the symptoms of frequent UTIs and nothing showing up in the subsequent tests. I was part of the thread a few weeks back. I have concluded that it is a Pred side effect. In the same way as it is a digestive system irritant, and a throat irritant, I think it irritates the bladder too. This symptom is less troublesome now that I am at a similar dosage to you. It is perfectly possible that infection or irritation has been caused by some of your tests though. I just drank plenty, it was miserable. I would love to know how it feels to have my adrenal glands kick it! It would be lovely if it was a whoosh of energy. I suspect though that I will just nap less and perhaps get to see a whole programme on the telly without nodding off. This too shall pass.
I had the uti problem at the beginning of the year. Exactly like you, the 3 day courses didn't clear it. The subsequent 7 day course did clear it. The samples were sent to the lab and it was an e-coli infection. I have never been prone to urinary tract infections. I am now extra careful about hygiene as I wouldn't like a repeat. Hope the 7 day course clears up yours too.
Thank you Liz for your valued comments. I am just about to take today's first of two and hoping they kick in fast. I think this antibiotic may be different from the others but as I disposed of the box when I had finished them but these are Trimethoprim 200mg I will ring the surgery later to see what the latest specimen reveals. I too am extra particular re hygiene but I am convinced it is due to the other intrusive tests I had only just over a week before this problem started perhaps because my body isn't used to being "prodded" Thank you again The comments on this site are always welcome and informative. Good luck with your "journey".
I had uti symptoms early on in my PMR career. Tests were negative. I attributed the symptoms to the tea I was drinking lots of. It was a citrus tea. I think irritated my Pred sensitized bladder.
After a cystoscopy it wouldn't be unusual to have cystitis due to bruising - and cystitis isn't the same as a UTI, a UTI causes cystitis. Has your doctor done a urine culture to see if it IS bacterial in origin and if so, what is the best antibiotic?
Pred and PMR both can cause irritable bladder symptoms and so can calcium supplements if you don't drink enough. Calcium grit can form in concentrated urine - it is a problem I have had on and off, usually if I am travelling and am not drinking as much tea as usual! So now I don't take the supplement on days I'm likely to be unable to drink as much.
Thank you for that info we can rely on your knowledgable input. The Doctor just asked me to give a urine sample to Reception to be sent to the Lab. I can't ring for result till after 4pm but will advise outcome. I think, as you and others say, drinking more water is the key with antibiotics so here I go with my next pint and hope I don't get an overload!
If it is not sorted out, ask for an appointment with a Urologist.
When you have finished a course of anti-biotics, eat Yoghurt and the best one is Yeo Valley pro-biotic organic yoghurt with contains L.Acidopolous, this replaces some of the good bacteria, as anti-biotics knock out goodies as well as baddies and you need those goodies back fast.
Or, if you are feeling flush.............VSL#3 £16.99 for 10 sachets with 450 billion good bacteria.
Without them after an operation, I would still be struggling.
Thank you jinasc. Very useful info. I have always had Yeo Valley joghurt every day before this condition but the VSL#3 sounds interesting. Is it via the Internet or Boots or Holland & Barrett for instance? Many thanks.
My local Boots ordered it in for me. They knew where I would not buy it from...........
It is available over the internet............but I am a suspicious type of person and like to know who makes it. The one I got was made in Italy, about 20-25 miles from PMRpro.
Too much stuff on the internet does not have country of origin and I don't even trust the USA since about 10 years ago a certain store had to recall Glucosamine and Chondrinitron made in USA as it had been actually made in China and did not contain what it said on the label.
Thank you for the info re VSL#3 I will make enquiries at our local Boots as I like the sound of that product. I too am wary of buying over the Internet and just don't. This my second full day of the 7 day course it already feels better and I have been drinking lots of water as had been recommended by others. Many thanks
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Antibiotics & Oral Thrush
Steroids/antibiotics/UTIs
My journey and experience with PMR
Raised CRP
methotrexate and antibiotics 
