Back to where I started in February 2022 😥

[Karendeena]

I posted a couple of days ago about my recent blood tests which had been sent to my Rheumy. The CRP was normal but the ESR has crept back up from 11 in May to 17 in July and is now at 27.

As I expected 'to tackle this' as my Rheumy says I need to go back to 5mg prednisolone daily and then see him in 4 weeks time.I am gutted having got down to 1mg. 17 months since diagnosis I suppose I was getting ready for a relapse. I hate this disease as much as the afib I also suffer from

[piglette]

How do you feel though, just because your readings may have increased does not mean you need to increase the steroid dose if you feel OK.

[Karendeena in reply to piglette]

Hi piglette, pain is quite bad in neck and shoulders, particularly right arm it's like toothache in the night. Not sure if I should defy my Rheumy or I couldn't face him in 4 weeks time. I see him privately so his secretary passed this message on

[PMRpro Ambassador in reply to Karendeena]

If you do, it will just get worse and you will end up where you were when you originally went to the doctor and were put on pred.

At what dose were you between May and July when the ESR went up?

[Karendeena in reply to PMRpro]

PMRpro 3mg in May/June 2mg early July

[PMRpro Ambassador in reply to Karendeena]

You may well be lucky and find 3mg is enough once you have cleared out the accumulated inflammation - those markers creeping up like that were a warning. It is disappointing I know - but you will probably do well at 3mg - you never were aiming relentlessly for zero, you were looking for the lowest effective dose and to be as low as 3mg after 17 months really is good. You will get lower - just not yet.

[Karendeena in reply to PMRpro]

Thanks PMRpro for the confidence boost

[Nextoneplease in reply to Karendeena]

Just wanting to send you positive vibes Karendeena, and to say I agree with PMRpro. Quality of life is the important thing, and you ar3 at a relatively low dose, so, disappointing as it is, it seems you need to go back up, clear out the inflammation and then slowly reduce again. Keep smiling 🙂 Hugs x

[piglette in reply to Karendeena]

I had a rheumatologist like that. He gave me steroids and then wanted me to reduce, reduce, reduce. No discussion. He was private. I just left him.