CRp

[EdithWales]

Sometimes I think I will never understand this illness, 6 years of raised CRP 185 at the onset of GCA, I was told by my first Rheumatologist that it may never return to normal. I have been having regular flares when I attempt to taper. This time just over a week ago got down to 4.5 then the headaches started so upped it a bit but not until I got to 10 was I sorted, should have done that from the onset. As I hadn’t had any bloods done since February and Brave Heart my Rheumatologist had cancelled me, I thought I should have some done. I told my husband that PMRPRO had said not to increase if the markers weren’t raised but when he looked at the results this morning it was CRP 8 and ESR 10, my markers haven’t been this low for at least 3 years. Makes no sense.

Bottom line is I am absolutely fine, back to dead slow tapering again and listening to my body

Take care all of you 🥂🥂

[DorsetLady PMRGCAuk volunteer]

Let’s hope it goes to plan....good luck.

[PMRpro Ambassador]

But symptoms always trump bloods ... Don't kneejerk increase pred in response to raised CRP/ESR - unless there are symptoms as well.

[EdithWales in reply to PMRpro]

Exactly but they don’t all recognise that and panic. I have asked for the Webinar Slides so they can go to the Practice. Spread the word

🥂

[SheffieldJane]

Thank goodness you are fine and back on track. Am I misunderstanding PMRPro’s advice? Doesn’t she advise that symptoms rule and some people do not experience a rise in CRP? Or is that mainly PMR? I know patients have differing ‘ normal” levels. So if you felt well and your CRP was high maybe an increase in Pred is not indicated. Clearly 10mgs was what you needed though. I am just learning about GCA and am rarely without some kind of headache and yet advised to get below 20 mgs because of high blood sugar and preparing for Tocilizumab . Perhaps my GCA is not cranial the headaches are a concern, not severe but they’re occipital and temple and scalp. Sorry to be all muddled.

[EdithWales in reply to SheffieldJane]

Don’t worry GP OH doesn’t understand it either, other than he always says you treat the symptoms not the blood results.

I have GCA confirmed by a positive TAB

In the past when I have had a flare it presented with head, neck and shoulder pain, CRP was always high 14 first time but it has been in the 20s and 30s, it was stuck around 12 for a couple of years. Rheumatologist said not too go more than 14

This time I flared at 4.5 with the headache and hip pain and felt dreadful. I am now settled at 10 with no symptoms.

I fully expected the CRP and ESR would be high hence my total confusion.

Take care

🥂🥂x

[PMRpro Ambassador in reply to SheffieldJane]

Maybe the confusion arises because the literature says that a SINGLE raised blood test shouldn't result in an increase in pred dose, a rising trend should be established. But many doctors don't seem to get that and panic when they see a higher reading. The other thing a lot don't know is that the increase in proteins leading to raised CRP and ESR can, in some people, lag a long way behind if the patient is on pred. Everyone is different - in every way.

[EdithWales in reply to PMRpro]

That make sense 🥂

[MrsNails]

Hello Dear Friend

Good to see you on here again 👏🏼 one of my Rheumatologists used to say the the CRP could trail behind the symptoms but my CRP Levels pretty much always mirror how l feel. My lovely Dr Lim (RIP) always asked me to get my bloods done first & then increase so she could see for herself what was going on.

Take Care & Take It Easy 😘

[EdithWales in reply to MrsNails]

Thank you. Normally I would have done but it wasn’t possible. You are right and its not recommended to take things into your own hands however I see Braveheart every three months and I know what he would recommend for a flare. Seems to have settled now thank goodness.

You take care as well

🥂🥂

[Telian]

I’m second time around and things not behaving as before. Having a PET scan to try and get to the bottom of it and bloods for first time since lockdown.

Please you’re feeling better on 10mg. I had to increase recently to 10mg but since reducing to 8.5mg headache symptoms returning but can’t increase until after scan. Feel rough and bewildered after over 6 years and getting to 3mg for 18 months where I felt normal. Feels like a distant memory now.

Hope all goes well for you.

[EdithWales in reply to Telian]

I am so sorry and share your frustration, you think after all this time it should be coming to an end and then it hits you again. Back to higher doses even though you know it’s not forever, getting to 3mg for 18 months is a real achievement, it’s a dreadful blow.

We have to hang on in the belief we will get better and we will

Hang in there

🥂🥂x

[Telian in reply to EdithWales]

Thanks Edith, as you say hang onto the belief it will improve and is my philosophy entirely.

Cheers! 🥂xx