When I was at my worst, my ESR was 94 or 97. My neuro was surprised when I began functioning well (for a person having PM) and my level was at 45. Prednisone put my ESR within the normal range, but it seems to be gradually creeping up.

Hi Amber. Mine was about that level until the Meds really started working. Trust in your Rheumatologist if he/she was worried about it he would be keeping a fortnightly eye on you. It is a marker for inflammation. I remember mine being 25 before diagnosis and my GP saw that as fairly normal. At this point in time it's all a balancing act for your doctor and the ESR is only part of the science. You may also like me have some arthritis in the joints as part of this disease, that pushes up inflammation markers too. Best wishes. Autumm

Hi my ESR have been between 97 to over 100 and my doc doesn't seem to know why. I've had many test but he still doesn't know why and it has been this high for a long time now.

@blackorse32
Has your doctor checked your vitamin d levels? When I started taking vitamin d3, my levels started to come down more quickly. Don't know if it was coincidental, or helped the prednisone. Also, a gluten-free (and sometimes grain-free) diet helps keep my inflammation levels lower, as does my natural anti-inflammatory. I hope you find something to bring your ESR levels down.

Hi nanny1611 - I asked my Doctor the other week about checking my Vit D levels but he said it was something they didn't regularly do. (Not much help) I thiink the last time was about 6 months ago so I think I will have to ask my Rheumy.

Hi Amber. Definitely ask your Rheumatologist what your Vit D levels are. Am really surprised at your doctor, so important to know this with DM/PM and taking long term steriods. I am still taking Vit d on my Rheumatologists instructions but without the calcium since my last Dexa scan. Autumm

Vit d when watcing is checked about every 6 to 9 months... Once it is stable on a doseage of supplement, you can go to every year.

i have taken it since 6 months in when we remembered to check and it was critically low like 4. Now i maintain it close to 50 to 65 range by taking a big dose every day. When it goes too high i stop one of my days but generally take it daily.