Blood test results

[Bubble56]

Further to my post last week regarding whether I should or shouldn't have blood tests done before seeing a rheumatologist at the end of this month my GP agreed to do them. The ESR is slightly raised 22, CRP 10 and Urea level is raised 8.7. I have no further advice from my GP, I am struggling at 6.5 mg pred what ought I to do now? I am so bitterly disappointed , I was diagnosed in October 2019 and was doing well till I got below 7, now I feel nauseous , weak and stiff. Help please !

[PMRpro Ambassador]

Go back to 7mg - you are never reducing relentlessly to zero , you are titrating the dose to find the lowest effective dose that gives the same level of symptom relief as the starting dose did. You should have been told that - not led to believe that it was all sorted and all you had to do was sail down to zero.

What has your ESR been previously?

[Bubble56 in reply to PMRpro]

Thank you both for your advice. I have made an appointment to speak to my GP tomorrow, have now taken an extra 1mg of Pred and will continue on 7mg. Thank goodness your advice was to get blood tests done- I was battling on with determination which I know is the wrong thing to do.🙃

[Bubble56 in reply to PMRpro]

Previous ESR when I was diagnosed was 54 then went down to 16 in June last year. CRP at dx was 25 and June last year it was <3.

[PMRpro Ambassador in reply to Bubble56]

A rising trend - not to be ignored. The lowest you get to is your target.

[DorsetLady PMRGCAuk volunteer]

That may be because your adrenal are realising they need to start working again -natural cortisol level is approx equivalent to 7.5mg Pred....so above that they can go to sleep, below it they need to awaken and make up the difference. That could account for nausea and weakness.

However stiffness sounds more like too low a dose of Pred......and as you are only 18 months in, quite likely.

Pred runs to its own timescale, not necessarily what your doctors may tell you.

You are not reducing come what may to zero, you are trying to find the lowest dose to give you relief from symptoms - maybe for you that was/in 7mg or just above. Won’t be forever, but it probably js just now.

You could take an extra mg for a few days to see if that helps.....any chance of contacting GP to okay it.....but you do need to explain to Rheumy when you see him. He may not be happy about you increasing dose, some are, some aren’t!