Increased inflammation-flare?

[1951grumpa]

In September last year my rheumatologist asked if while I was at Mayo Clinic I could see an endocrinologist about a possible testosterone issue. That was ok but I mentioned y long term prednisone, and getting off of them. I was put on 20mg hydrocortisone 10 in am and 10 at 3pm. Reduce to 15 after a month and take a morning cortisol test. The results were well in true normal range. So I was told to slowly reduce, but the inflammation created back so I was to go up and make a long slow reduction. It was agreed for me to reach out to my local rheumatologist. I did and I wanted to return to prednisone but she said she has no experience with hydrocortisone and switching back to it. I was surprised. She insisted I was getting off steroids and the Only option was Tocilizumab. She would give me a short course of 2.5mg prednisone. My sed rate was elevated but she said it was normal. She said I could get a second opinion. A week later I saw her after visit summary. She said I have Severe osteoporosis, that Mayo said I had temporal arteries. Which it did not. Also something else that I don’t have. I did get a second opinion at the university of Chicago and am now seeing a rheumatologist thre. She put me back on 5mg prednisone but after 4 weeks the inflammation that built up hasn’t settled down. My thighs but mostly in my shoulders and hands. My next appointment is in about a month.

My Dexa last Dexa scan has my lower back and hips in the normal range and my neck as osteopenia. That was in 2022, my first on was in 2011 and it’s the same.

[Sophiestree]

Your first rheumatologist sounds concerning to me, and irresponsible. The severe osteoporosis comment is just bizarre. Thank goodness you aren't going there any more.... however 5mg of pred is a low dose if you are having symptoms, can you get in contact with them and get them to increase it? You might only need a higher dose for a month but it would knock the inflammation on the head quicker and then you can taper.

[DorsetLady PMRGCAuk volunteer]

Agree with Sophiestree that 5mg is not enough - you need a higher dose to get the inflammation under control. No point waiting another month - if it hasn’t made any difference over 4 weeks it’s unlikely to over another 4.

Please contact Rheumy for advice.

[1951grumpa in reply to DorsetLady]

I got a response from my rheumatologist. She wants me to go up to 7.5mg from 5 and see how that goes. Before I got a response I went up to 10mg for a few days. Now I’ll continue with the 7.5 till my appointment in on the 24th. Thank you

[DorsetLady PMRGCAuk volunteer in reply to 1951grumpa]

Okay- thanks for update, and hope it works for you,..

[PMRpro Ambassador]

You need a higher dose to springclean - then you may be able to go back to "daily dusting". But 5mg isn't enough for the heavy duty clear out.

[1951grumpa in reply to PMRpro]

I got a response from my rheumatologist. She wants me to go up to 7.5mg from 5 and see how that goes. Before I got a response I went up to 10mg for a few days. Now I’ll continue with the 7.5 till my appointment in on the 24th. Thank you again. Geo.

[1951grumpa]

Thank you for your thoughts. I just sent an email to my doctor. It usually takes a couple days for a response.