Just had phone call from rheumy saying latest bloods have sky high irritation levels. (CRP 86 ESR 38). I’m due to reduce from 17.5 pred to 15 tomorrow and they still want me to do that! I’m struggling with several other things at the moment, heart arrhythmia which I’m waiting for a procedure for; newly diagnosed diabetes; liver function very low, awaiting biopsy. Reluctant to change much at all just now. Thoughts?
@aileen1955
I newly diagnosed in October 2017 so I don't have a lot of experience but I do spend a lot of time and forms and researching. I really just wanted to say I'm really sorry feeling for you and I hope things ironed out across the board with everything you're dealing with. I know I am taking affirm approach with my diet and supplements period following as best as I can anti-inflammatory diet, gluten free diet, low to no sugar. I'm not perfect but I am actually very happy with how it's going. I feel if I can do this anyone can do this 💜
Janet
As the point of taking Prednisolone is to reduce inflammation, it certainly doesn't seem the right time to reduce your dose when your tests are showing increased inflammation! Has the 17.5mg relieved all or most of your pain?
i can only think that for the majority of people 15mg is their starting dose, so maybe they think you will be fine at 15.
I'm not a lot of help because I agree with you in that I don't understand. I'd be asking them. Or compromise by reducing by 1mg and see how you feel.
Don't reduce! Your results show a high level of inflammation in your body and the last thing you should be doing is to reduce the pred. I can't understand how your rheumy can tell you to reduce as planned, it's crazy and against good medical practice.
Do you have PMR or GCA? If GCA, I would think it imperative that you increase the pred.
Both your blood markers are very high.
I just checked back on your previous post and can see that you have GCA and were at 40mg pred not long ago. You're having a bad flare by the sound of it.
Can you speak urgently to your GP? You really need to up the pred dramatically and your rheumy is obviously not up to the job.
Well do well done and well said Susanne!
Thank you Sheila. It really scares me when rheumys behave like this. I just hope Aileen is getting the correct help.
I agree with the others, this is not the time to reduce, especially as you are recovering from GCA, not "just" PMR.
Your doctor is crackers!!! By the way, it is inflammation, not irritation - though irritation seems fair enough under the circumstances.
The others have said the same as I would say - no reduction until the levels have been shown to be at least stable. I wouldn't say go back up until you have had another blood test that shows a rising trend, but definitely NOT reduce.
Ha, yes, a slip of the mind....tho irritation is a good description!
When my pain is bad, I have what I call my “torture” dreams - people are squeezing my arms and sticking needles in my shoulders and calves. You’d think it’d leave you alone in your sleep, wouldn’t you!
I have PMR and ore diastase and arrythemia ect ect but am doing fine keep positive and prayers for you phyllis