guidance please

[Staffieblue]

MeHello folks , I have been checking in daily for info and understanding a bit more about PMR , have been reading the recommended info . Thank you for these they are invaluable help . I have had this condition I think for many years .I remember being unwell and had to go to hospital I collapsed many years ago.My husband was very ill at the time kidney failure .The consultant asked me three times had I been involved in a car crash as my ESR levels were so high , hope I have spelt that right .!Any way that was that went home no treatment plan . In and out of docs for years . Was also told it was fibromyalgia put on various antidepressants . Had to reduce my hours recently at work due to loosing time felt so guilty ..Spoke to occupational health advisor for work reasons she was a ray of light listened and enlightened me gave me good advice . I have always been very good and relentless in looking after my loved ones and patients at work , to care comes effortlessly to me and I have a passion for it . But I never applied this to my self … I have literally dragged my self around aching in pain , felt like I had rusty meat hooks in muscles and I was hanging off them . The fatigue is awful , would push myself to complete my jobs then just stop as I couldn’t move about any more , Then in August managed to get a telephone consultation told the doctor how I had enough and wanted help , that’s when she said would I try taking steroids and if she was right I would get relief quickly . Started on 20 mg prednisolone in August diagnosed withPMR now on 12.5 but not feeling so good as I did on higher dose . Have had a ongoing UTI as well hadn’t helped . Haven’t had one of those for ages either . Can I ask when do your adrenal glands start going down , ? is there a high level of prednisone needed for this to happen .Have noted that with GCA the steroid dose is higher. I did get my eyes checked as my sight has gone down a little , all ok though Also had very sore scalp .I do apologise for my lengthy post but felt I needed to explain . Thank you all again for guidance you really are incredible people 2 hours ago

[PMRpro Ambassador]

When you say you feel not as good as on a higher dose - is that the symptoms are appearing again or just less oomph? Pred at higher doses can give you wings and it is rather misleading.

If your ESR was high - it wasn't fibromyalgia, it isn't an inflammatory disorder. You do seem to have drawn the short straw with your healthcare in the past!

More than a few weeks at high doses or a couple of months at lower PMR doses will result in suppression of adrenal function - but the pred replaces the natural cortisol so it is only a real problem when you get below about 7mg/day which is about the equivalent of the physiological level.

Have you still got a sore scalp? Any other GCA symptoms? And what is your ESR like now?

[Staffieblue in reply to PMRpro]

Thank you PMR Pro , your title is very fitting of you .

My scalp is no longer sore , and my last lot of bloods were ok I was told .

The opticians checked my sight was not concerned gave me eye drops for the stingy eyes.

I’m having bloods taken next week.

Does every one get passed on to a rheumatologist?

Thank you again your knowledge is invaluable

[PMRpro Ambassador in reply to Staffieblue]

"Does every one get passed on to a rheumatologist?"

Not necessarily. It is said that in the UK at least 3/4 of PMR patients are managed by GPs. Referrals tend to be for atypical cases, people who are struggling to reduce their pred or who have complex medical histories. Suspected GCA is a medical emergency - like a stroke or heart attack and should be referred and seen by a specialist within 24 hours. Some hospital EDs have protocols for suspected cases, others don't.

[Staffieblue in reply to PMRpro]

thank you once again .

[DorsetLady PMRGCAuk volunteer]

Hi,

Maybe have a look through this - explains what you should/may expect -

healthunlocked.com/pmrgcauk...

But on first read, would say you probably have reduced a bit quickly…and UTIs are quite common when you are on steroids

[Staffieblue in reply to DorsetLady]

Thank you DorsetLady , your input is valued very much

[piglette]

The adrenal glands do not start waking up until around 7mg, so you should have no adrenal effects for the time being.

[Staffieblue in reply to piglette]

Thanks piglette for the guidance will know what to watch out for

[Meggsy]

Like DL, I think maybe 20 mg to 12.5mg in two months was maybe too fast a drop. I love staffies! 🌻

[Staffieblue in reply to Meggsy]

Thanks for your reply .

Yes he’s a lovely dog he’s my mate follows me everywhere

[HappyDiamonds in reply to Staffieblue]

Sorry, not able to offer you any advice but just wanted to say how beautiful your Staffie is. I was very lucky to be owned by staffies for over 40 years and always had a couple at a time, such lovely natured dogs and so often misjudged. I now have an adorable Black Labrador who is the love in my life. Im sure you will get excellent advice from the forum specialists and wish you well.🐶🐾

[Staffieblue in reply to HappyDiamonds]

That’s such a lovely message thank you has made me smile , no matter about info .

Yes he’s a handsome fella , and has been such a companion , when my sons are off doing their thing I’m never lonely he’s a old soul he knows every word I say , even the bad ones 🤣 Thank-you again