Blood inflammation numbers.

[cycli]

When first tested they were 176 13th june. Now down to 71 was hoping for less. Is this normal or slow. On 40mg pred. and have GCA and PMR. Sedimentation was 21 last now 50.

[PMRpro Ambassador]

Sorry - which blood test do you mean by "they", or at least, which is which, it isn't clear.

But they take a while to fall to normal levels. The presence of inflammation can last some time until the pred calms it all down. However - if those figures are right the ESR is increasing and THAT suggests the pred dose may not be enough to do the job.

[cycli in reply to PMRpro]

sorry PMRpro...176 was ESR I think now 71 after 8 weeks. The 21 to 51 was sedimentation which I believe indicates settling faster and therefore better. I have recorded a daily progress or other note since my diagnosis on the 13th June. Would anyone be interested? It's a bit lengthy and people could just dump it if it takes too much space.

[PMRpro Ambassador in reply to cycli]

Sedimentation rate IS the ESR (erythrocyte sedimentation rate). The faster the red cells settle to the bottom of the tube the GREATER the inflammation.

The two common inflammation markers are CRP (c-reactive protein) and ESR. Both are non-specific and can be raised for other reasons.

[cycli in reply to PMRpro]

I'm just a simple bloke PMR pro....not surprised I'm confused. So sedimentation was 21 now 50's and thought the higher number meant slower so doc. said. So the initial reading must have been CRP at 176, went to 120's, then 76, now 71. I guess I have a long way to go. Don't know about levels but was told by doc. that normal was below 10 for this. I can feel the condition is still lurking but mercifully I can get through the day pain free as long as I don't push it. I suspect the dose could have been made higher initially for fast suppression but the Dr. was aware that I had a fear of Prednisolone. Over the years she has learnt to heed my own awareness of my body and respects that I am proactive in recovery. I don't like being sick but this condition has floored me like no other. Quite humbling.

[PMRpro Ambassador in reply to cycli]

" the higher number meant slower so doc. said" - for goodness sake! The normal range for ESR is 1-20, but that is the range for a large population of people, thousands at least, not for one person. Above 20 is questionable, 50 is definitely raised. And it signals MORE inflammation as it is the distance fallen by the red cells that is measured. Yes, under 10 will be for CRP and that IS falling nicely. Give it time.

[cycli]

thank you. She's talking of reduction but that seems premature as I can clearly feel the disease is still rumbling below. I'm trying to balance exercise and rest but really it's a guessing game when I still have inflammation. I struggled for years with indicators of this condition before it finally nearly crippled me. I'm just grateful to finally know what I've got . It really is a steep learning curve and very humbling for someone like me who has always pushed through anything before. thanks for the reassurance on the CRP. I'll keep hoping. There's a mindset to this I feel and positive is better than negative I'm sure.

[PMRpro Ambassador in reply to cycli]

I'd say you have a bit to go before being confident a reduction will work, still having inflammation rumbling on makes the baseline high. But you can help things along by moderating your activity a bit - not stop, but don't push it.

[cycli in reply to PMRpro]

Thank you PMRPro I am trying. A bit each day is better than none, just slow. I'll discuss bloods properly with the Dr. on next call. Thanks for the heads up.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

..and maybe listen to people that have the same illness as you, not others on another post who have something completely different. Different illnesses, different reactions, different protocols.

If you haven’t read any of these posts, might be useful - if you have then fair enough -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[cycli in reply to DorsetLady]

In fairness dorset lady he replied to my post but picked up on the cycling...I did winkle out his condition was different as he reduced and recovered so fast. Muscle loss due to pred. was significant though and a warning sign for me, although I am not expecting any reduction soon so looks like I might be having a long haul to get anywhere near my previous level. I will read these and thank you.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

I know he was talking about cycling predominately, but initially he didn’t clarify what illness he had, and therefore most people reading would assume because he was on the PMR/GCA forum that’s what he had….so his advice was a bit off kilter.

My concern (and it is only mine) is that information given by someone who doesn't understand our illnesses could be damaging to a new patient…who may think a fast taper and intensive exercise is the way to go..especially if they only read parts of the post and not all.

[PMRpro Ambassador in reply to DorsetLady]

"(and it is only mine)" - no, mine too, Being on pred is one thing, being on it for something other than PMR may be something entirely different in that context.

[cycli in reply to PMRpro]

Yes and I am taking this seriously. I'm of the opinion these two conditions would put you 6ft under if left undiagnosed. Not intending to go there anytime soon.

[PMRpro Ambassador in reply to cycli]

I had PMR symptoms for over 5 years before getting to try pred. Which does tend to give me a different view of a lot of things - especially pred side effects being similar to PMR sideeffects in some ways!

[cycli in reply to PMRpro]

I noticed that the pred. side effects seem very similar to PMR side effects but as my responses to date have been all about remission of the effects of PMR and GCA I can only see pluses for now. I genuinely could feel all the things that went seriously wrong actually correcting in my body. Sounds weird, but as a serious cyclist i can tell you we have an unusually keen awareness of how our bodies react. I am sad that I mistook so many indicators for similar conditions the training and riding replicates. That's why I took so long and why it finally completely floored me. You can only push the body so far. Took me until I was 70 to finally realise that. Better late than never. I presume you were on other treatments for PMR before Pred. If not did you just try and work your way throgh it like I did.

[PMRpro Ambassador in reply to cycli]

No, nothing, there is nothing else that works. I simply wasn't diagnosed as my blood markers were within normal range despite textbook symptoms - though raised for me as it happened. Age (51), unfit (I was at the gym or doing classes 5 days a week), depression, all in the mind/somatism - they got an earful on the last! And when I took 15mg pred - I had a minor miracle in under 6 hours.

[cycli in reply to PMRpro]

That's bad. You're much younger than me so must have been a shock. I guess I've been struggling on with symptoms for many years. Can Imagine the steam on that last patronising comment. Likewise noticed positives within 8 hrs. A blessing. I had to really persevere with pushing medics as they were just dealing with their specialities and no one symptom fitted their known conditions. Got there eventually but it nearly made me give up. Couldn't speak properly and couldn't sign my name couldn't manage the stairs properly just awful. Glad you are on here.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I guessed that, but I was implying that it was personal view, not "official charity view"

[cycli in reply to DorsetLady]

understood and agree.. It concerned me as was so fast. False hope is worse and I'm not going to risk getting taken over by this condition.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

If you read my story, you will know I was ultra cautious in tapering...for obvious reasons.

[cycli in reply to DorsetLady]

How do I read your story as there is only a very short bit under your profile...I'm rubbish at these things.

[PMRpro Ambassador in reply to cycli]

Click where it says Read more in blue ...

[DorsetLady PMRGCAuk volunteer in reply to cycli]

If profile isn't enough, then have a trundle through this for all the gory details…..healthunlocked.com/pmrgcauk...

[cycli in reply to DorsetLady]

got it and see you've had a very rough ride. Sorry about both losses and praise for how you've come through. I'm clearly lucky despite everything. I'm still hopeful I can beat it, but if I have to live with it want it on my terms if possible.

[cycli in reply to DorsetLady]

read them and very helpful. Onwards and upwards. Thank you

[piglette]

The important thing is How do you feel? Is the pred working? My inflammation markers are all over the place. They tend to be a back up if you feel rough. Also don’t even think of reducing if you feel any niggles with the PMR, it will only raise its ugly head and bite you.

[cycli in reply to piglette]

Hi piglette...feeling just about in control. Pain free and not wanting ever to be back there. I wouldn't wish these two on my worst enemy if I had any. Thanks for the thoughts . I have a sneaky feeling I should have been on a higher initial dose but seem to be managing with this.

[piglette in reply to cycli]

I so agree, going back to that pain is not worth thinking about.

[cycli in reply to cycli]

Just thought I'd sign this one off. Recent blood tests show 2 and 4 for the inflammation and sedimentation so all good. Haven't been in pain for over 6 weeks and now reducing from 40 to 32.5 and going to be 30 mg tomorrow. aiming for 20mg and so far no reaction to reduction. Famous last words??? we'll see.