It’s me again- so frustrated

[Bro-]

I’m so frustrated and don’t know where to turn. I have been sick and in pain since September 9th - my bloodwork didn’t show inflammation, my bilateral temporal biopsy came back negative, MRI yesterday all looks normal ! Although I’m diagnosed with possible PMR/ GCA my doctors are still calling me a mystery. I have had every blood test possible to rule out any tick born disease and other autoimmune diseases . So here I am still extremely fatigued, achy almost flulike some days . Still have tender scalp and tingly headaches. Just getting to my dr appointments and showering is a struggle. I’m sorry for the long repetitive posts . I just wish I had some answers as to what I have!! Dr is tapering prednisone because he said if it’s not working like it should be and you have terrible side effects let’s taper it then redo bloodwork and see where you are at.

[DorsetLady PMRGCAuk volunteer]

I know we’ve said it before, so sorry to re-iterate, but -

You can still have PMR/GCA without having raised blood markers (up to 20% of patients are never raised),

A negative biopsy doesn’t prove you don’t have GCA, just means the sample they took wasn’t infected - but other blood vessels could be.

Maybe they didn’t leave you on 60mg long enough to mop up all accumulated inflammation - if so, then you will still have symptoms. Now you are reducing, no wonder it’s not working - and it never will if the dose is not high enough.

Remind me what “terrible side effects” you have.

I guess you can only follow doctors advice, and see what happens - not really good enough, but unless you can get a second or third option you are stuck with the situation as it is.

[Bro- in reply to DorsetLady]

I agree with what you’re saying and am definitely going for second and third opinion now that I’ve had all the tests. My side effects are panic, constipation. dizziness. Numbness In feet and hands , heartburn. Hair loss They have subsided a lot since the prednisone is lowered. I still think it’s GCA but Drs aren’t so sure.

[DorsetLady PMRGCAuk volunteer in reply to Bro-]

Side effects are quite normal I’m sorry to say, especially at high doses...

...and having been there, the symptoms sound very much like GCA, but we both may be proven wrong. Do hope you get a diagnosis soon.