hi all , I just had my bloods done and the cortisol is slightly reduced at 239 and she is changing my steroids to hydrocortisone 10mg in the morning 5mg at teatime
Re do bloods in 3 weeks
has this happened to anyone else with slightly lower cortisol levels ?
My Endocrinologist was going to go down this path. Hydrocortisone is more like our own cortisol production in that it has a shorter period of being active in the body and this signals our own Adrenal system to get working. The trouble is, it is not very good at reducing the inflammation caused by our autoimmune diseases, so it really depends on how active your PMR is and what dose you are on. The slightly lowered test results could simply be Pred doing its job. My Rheumatologist and I decided on balance to remain on Prednisalone.
That is what I am concerned about my ESR is at 20 and crp normal at 2 and I’m on 3mg of pred and can’t get lower when I try and drop I feel awful .
I’m getting inflamed really red elbow’s sore groins so she was going to start me on a new injection called Adalimumab but I’m honestly fed up with trying all different things .
WHY do you feel awful? Is it adrenal effects or is it flaring PMR? What does she think the elbows/groin problem is? Is she suspecting RA?
If you have PMR Humira/adalimubab will do nothing. And hydrocortisone won't manage PMR symptoms anything like as well as pred does - it is a far less antiinflammatory substance. If she has misdiagnosed you, Humira MIGHT help.
I think she is being silly - 3mg is a low dose of pred and Prof Baskar Dasguptar told up he keeps patients at 2-3 mg/day longer term to reduce the risk of relapse. And the endocrinologists have decided there is probably little difference between HC and pred for management of adrenal insufficiency,
endocrine-abstracts.org/ea/....
If your patient potentially needs the pred to manage an inflammatory condition - leave it be and don't risk upsetting the applecart.
I think it’s both shoulders get sore and feel dizzy nauseous and fatigue but feel very fatigued anyway at 3 could very easily go back up to 5 .
I wouldn’t say aflame but niggly pains
She said psoriasis arthritis so she has done a lot of bloods to o check tb and all sorts of other stuff all came back normal.
I told her I’m already struggling with fatigue at 3 don’t want to be worse
Agree that it sounds like a combination of PMR flaring (shoulders definitely, fatigue maybe ) and adrenals struggling (fatigue and nausea).
Yes I think so too
What is her proof of PsA? That seems to be a favourite option, the second UK rheumy wanted it to be that because an aunt had had psoriasis - another had claimed it was OA. 15 years later - no sign of either and TCZ works a dream.
Because I showed her a picture of my elbows very inflamed how sore my feet and groins are so she came up with that
What sort of sore? My feet were very painful at the start of PMR - really hurt to stand up from sitting and start to walk. Felt as if my feet were crammed into a size too small shoes! And I had pain deep in the groin, again when standing up, and thought it might be OA - all eased with pred after a few months and assumed now to have been bursitis in the hips and synovitis in the feet.
I had to have a steroid injection in my foot it was so painful to walk , it’s funny I asked her if it could be bursitis in my elbows and hips but she said no the elbow would have a fluid bubble in it which it doesn’t but it does feel on fire
I don't think that is necessarily true - there are always exceptions.
Her answer is I’m always a mystery with this illness so that’s great isn’t it , I mean does this seem the right way to go after not even seeing her for two years and now she’s throwing all this out there I’m honestly not sure I’m definitely not going back the way with this illness
Obviously has a guilty conscience!!! Difficult I know but one feels a second opinion might feel comforting!
Funnily enough my rheumatologist thinks I’m a mystery too 😁
I’ve been on this journey for over 7 years and they now think I have a rheumatoid arthritis but I’m sero negative. I’ve found tapering very hard and it only improved when I started Etanercept (a biologic for RA) nearly two years ago. Around 2mg a few aches and pains started particularly in feet, hands and groin. Had a face to face appointment with biologic rheumatology team and they believe I still have too much inflammation still. They use ultrasound and I could see it. Now recommending I change to a JAK inhibitor. I’m definitely being treated as a RA patient now so might move over to that community and see what I can find there!
Good luck in your treatment 🤞🤞
My adrenal function wasn’t great at 3mg but a VERY slow reduction did the trick but it wasn’t an easy ride. My Endo was the eager sort and wanted 1mg Pred per month but I said no as I felt too ill to cope with life and wanted to do it my way. There does seem to be a variation in opinion amongst Endo’s as to how it should be managed so it is clearly not an exact science. Is this your Rheumy deciding on the Hydrocortisone start? What sort of awful do you mean when you reduce?
This is what should be done.
Yes, Rottsuzi. In July I started on Hydrocortisone 10 mg in am & 4 mg at lunch which has helped. Some days I may take 4mg tablet at 3 pm, so I won't feel quite so exhausted for the remainder of the day. Next week I am going to speak to my Endroconologist about the dosage. Even though it helps me to cope better, I still feel flat near the end of the day. The situation being I find the evenings much harder to cope with.
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