I was diagnosed with PMR in July ( having struggled for months before). Started on 15mg. Taken down too fast to 7.5 so have now been on 9mg for 3 weeks. I am still having ailments/ conditions that are seriously affecting my quality of life. Am I being too optimistic as to how affective steroids can be? My thermostat seems to have gone: hot, sweats when slightly exerting myself, pains around my chest and breathless when walking and particularly bad going up stairs. I can cope with the diminished aches, it’s the fatigue that is so debilitating. I also have had a series of urinary infections which I can only put down to being run down. Please can anyone tell me if this is their experience. Any advice greatly appreciated....and the way forward even better. Many , many thanks.
Which ailments are usual.....??: I was diagnosed... - PMRGCAuk
Which ailments are usual.....??
Hi Bloomsbury49, Welcome to the club, nobody wants to join!!!! I have both GCA & PMR; and was diagnosed in November 2017. Here is my experience as of March 2018; I was about 4 months into my journey when I wrote this.
rantingsofamadwomanblog.com...
I wish you all the best and hope your journey is short and simple!
Thank you so much - I love your spirit!
Very helpful. And so good to feel the support of this group - I could weep!
You are most welcome... glad it helped! And nah... no use weeping; you know what they say: Laugh, and the world laughs with you; weep, and you weep alone! 😉
Hi,
And welcome,
Much sounds very familiar Im afraid.
Have a look at this, and the other links it gives, it may help you understand your illness and all it’s attendant problems.
healthunlocked.com/pmrgcauk...
Thank you so much for this. Getting friends and family to understand is another tricky bit - particularly if you have been the ‘strong one’ in the past! Don’t fancy wearing a statement T shirt!!!
I would offer you mine as it’s no longer needed, but it’s a bit bloodied and torn! 😏.
Yes explaining to families is very difficult...they really don’t get it! Not entirely their fault..they are weird and wonder illnesses.
Unfortunately they are all aspects of either PMR or pred - pred only manages the inflammation that leads to pain and stiffness and the symptoms we call PMR. PMR isn't the illness, just the manifestation of an underlying autoimmune disorder which continues chugging away in the background, causing the symptoms that make us feel quite flu-ey. Are the UTIs really UTIs? Has a sample been sent for culture to be sure? The symptoms can happen along with PMR - they did for me - but some can also be due to pred (though pred improved things a lot for me).
Fatigue is a part of almost all autoimmune disease and has to be managed by you I'm afraid, by pacing and resting appropriately:
healthunlocked.com/pmrgcauk......
Read all the links. They may help explain your illness to you and to others.
Thank you so much - that was really helpful.
Yes. Not all you symptoms but agree the extreme tiredness is debilitating. My GP just dismissed it although I was with her at the time it occurred, think she thought I was putting it on.
Grr - people have no idea how debilitating and life affecting the fatigue is!...thank goodness for the support of this forum!
They're all typical of the illness particularly the fatigue, which is the worst in the first and second year. I have GCA and PMR and have experienced all you say and more. I've been 'coping' for 4 1/2 years and the UTI's have become constant. Sometimes I do not have an infection but I always had/have blood in the urine. That set off a series of tests. I saw Gynae, Urology, Oncology, Dermatology, Vulvodynia, Neurology, and Endoscopy - plus Cardiology for other symptoms. It took nearly two years to 'do the rounds' and I am now waiting to see Urology again re the 'discomfort'. For the first time my Rheumie has admitted he thinks it's down to the steroids! Prior to that he always said it wasn't - but only after I'd been dismissed by the aforementioned, not sure if that's true but coincidence it seems. The depts all thought is was down to the illness, pred or both.
Everyone is different and not all get the same symptoms, so don't stress as it will only make matters worse. Research is ongoing we know and recently I was asked by my rheumie to document all the symptoms I'd had since diagnosis and to ask any unanswered questions I had - needless to say I jumped at the opportunity. I'm just pleased I had the opportunity to have a say, sometimes it goes into oblivion when trying to explain in a clinic setting but seeing it written down even I was shocked at how much I was trying to cope with. If we were animals we'd be euthanased I'm sure! Apologies but it gets you like this, I have to make light or I'd go mad. If you have any specific questions re the UTIs you can private message me if you wish - I can only share my experience but if it helps......
Thank you so much for your message. Yes my doc said uti not due to PMR or steroids....but it all seems too much of a coincidence....
Can I share this with you and fellow uti sufferers: I finished another dose of antibiotics about 3 weeks ago. I have started taking Dmannose powder recommended by a friend who is a naturopath. Like me you probably groan (and more !) when someone suggests Cranberry juice!!! But I was intrigued to discover this is the active part found in cranberries. You take it twice a day everyday..... for me so far so good although I know I've only been taking it for 3 weeks! Just a thought! It's the only non traditional supplement I'm adding to all the other pills!
I do feel for you and your symptoms and really hope you get some respite! Thank you again for taking time to reply.
Of course you can thank you for your tip - have to say I've never heard of Dmannose powder but am willing to try anything, and it sounds like something I will look into. Do you take it every day regardless of UTI? I presume it's okay to take with pred?
Cranberry juice has always been recommended but I hear even that's being relegated - what next......I know someone will be along soon with another answer for us.
Hope you don't feel too bad and the remedy keeps working for you - these doctors have no idea what it's like do they?
D-mannose has been suggested on here before
That's reassuring - hopefully as a positive!
Yes - I am taking 1gm in glass of water twice a day. All I can say is that for the last few weeks I haven't had that awful dragging pain meaning full blown uti is gonna kick in any moment.... good luck with things getting better for you...
Look forward to that - we don't ask for much do we - we're quite low maintenance when you think that Christmas is coming - wonder what I/you would wish for?
Just been looking it up - in capsule form they're 500mg - you say you only take 1mg powder twice daily - is that right?
Sorry!! It's 1 gram of the powder twice a day. They give you a tiny scoop to use!
The symptoms CAN be due to PMR - I mentioned it to one of the research docs in Leeds, she started asking her patients and lo and behold - lots had bladder problems...
This is what is so tough about PMR I am realising : feeling so generally rough in a pick and mix sort of way. And yet some medics still seem to dismiss things like utis as not connected when you the patient suspect otherwise and are desperate for help! Thanks for your messages!
I don't think they see enough of us and don't join up the dots. After nearly 10 years on the forums there are a lot of things I could tell them about PMR if they would listen...
Wonder if there's been a breakthrough then - my 'you know who' rheumie agreeing my probs might be due to pred!
This forum has given me such support, advice, understanding and confidence in the last few days ... i needed more than packets of steroids!!!! Thanks again.
That's why we're here - can't stand the word but empowerment is very important.
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