at a loss to know what’s what

[Visby]

I posted a while ago to say I was seeing a new rheumatologist saw him in June have just finished having tests which included spinal mri , X-rays on hips and shoulders also scans on shoulders the results were I have facet joint osteoarthritis throughout lumber spine the most marked at L4-5 and L5-S1 nerve roots have potential to be irritated by disc bulges , X-ray of shoulders reveal large are of calcification there is also a large bony spur . I also have osteoarthritis in my left Foot .I don’t reall understand all this as my appointment was about my PMR which I have been on pred for 7 years my GP sent me to see this new rheumatologist as my CRP levels were up this has been happening on and off for years so my pred goes up and then I reduce accordingly I am at present on 7 mg the reason I am writing this post is at the end of the letter from rheumatologist he thinks the findings would appear other than PMR but I wonder if that’s the case why do I still have all symptoms of PMR deadly fatigue, hip pain arm pain unable to dress myself at times hand & back spasms……

He suggests I reduce pred by 1 mg a month and refers back to GP for blood tests to check CRP and thinks leflunomide aren’t needed at the moment so that will leave me with nothing , the rheumatologist did not do a blood test when I saw him in June but I had one yesterday so will see I have been in a lot of pain for a few weeks but didn’t up my pred as was waiting on all the test results but what upsets me the most is the rheumatologist says he hasn’t arranged a further review for me at his clinic I am at a absolute loss to know what do even if he had given me an appointment to explain the results of the tests so I understood the meaning of them it would have been something . Sorry to write so much

[PMRpro Ambassador]

He obviously thinks that the symptoms that have been put down to PMR are being caused by the others things he has listed - certainly OA can cause some of them. The deadly fatigue no COULD b your adrenal function is not catching up with the lower dose of pred. After 7 years on pred I doubt you will cope with a reduction in the pred dose of 1mg per month without adrenal insufficiency kicking in at some point even if it isn't that at present.

I must say - if it were me, I would be considering a second opinion but you do need to get the right doctor. And I would be demanding close monitoring of your adrenal function while reducing at that speed.

[Visby in reply to PMRpro]

thankyou very much for your reply as soon as I get my blood results I will visit my GP and as for adrenal function test and take things from there

[PMRpro Ambassador in reply to Visby]

At 7mg I doubt any endocrinologist will approve a synacthen test - it is felt to be fairly meaningless at doses above 5mg and they prefer it to be lower. Your GP could start doing basal cortisol levels - a blood sample taken at about 9am having not taken pred in the previous 24 hours will show whether you are producing any cortisol at this stage (you probably aren't) and if the level is low they do need to keep an eye on your in the event of stress - illness, injury, emotional all count

[Visby in reply to PMRpro]

thankyou stress is playing a big factor this year in April I was in hospital for a week on oxygen and antibiotic injections I had septicaemia and pneumonia after a 2 weeks of hematuria and being catheterised which kept blocking up a nightmare I do appreciate your time replying