Blood work

[Lin6075]

Good Morning All

When I was diagnosed with pmr all the blood work they did was high. I was on 20 mg for awhile and then tapered down from there to today at 8mg.

Two months into pmr all of my blood work was normal. I have blood tests run every 2 months and it is consistently normal. I have gone in during a flare and had it retested and even during a flare my numbers are all good.

Does anyone else experience this and yet still live with so much pain? I just don't understand the pain in light of the blood work.

Thanks

Have a Blessed Day

[DorsetLady PMRGCAuk volunteer]

Hi Lin,

For some reason some people never get raised blood markers even pre Pred, so very difficult for some doctors agree diagnosis.

For most people they should be good whilst you’re on Pred, but rise when you have symptoms. Maybe you’re just one of those that don’t react as expected, which is why we always say go by the symptoms first and foremost!

Have you ever been pain free? Or has it come on as you’ve reduced?

[Lin6075 in reply to DorsetLady]

I have never been pain free. There is, I can try and live with it pain and then there is I can't get out of bed pain.

[DorsetLady PMRGCAuk volunteer in reply to Lin6075]

Hi again,

Looking at your previous post you say you’ve been on Pred for over 18 months, and you’ve never been pain free at any time during that period. That’s tells me you’ve never been on a high enough dose, even at the beginning, to get your inflammation fully under control, or you have been misdiagnosed, or you are trying to do too much. And from what you say, I doubt it’s the latter.

I have no knowledge of Fibro, but is there any way the pains could be that rather than PMR?

I think you need to go back to your doctor and get referred to a Rheumatologist- you don’t say whether you are already.

You really should be having a better outcome on Pred that you are at the moment, and that’s needs sorting out by the medics.

[PMRpro Ambassador in reply to DorsetLady]

Ditto, ditto, ditto... I agree wiv my friend...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Course you do! Great minds and all that!

[Lin6075]

Thank you for the reply. I do have fibro. but I can't take the medications available for that. (allergic) But the pain of pmr I find to be totally different than fibro.

Fibro I have had for 20 years and it is manageable. This pmr is a totally different story. I still don't get why in the beginning my blood went back to normal after a month of treatement and has stayed that way, and yet I'm still in so much pain and many flares.???

Doesn't seem to be any good answers, at least not from the dr's.

[Lin6075]

Also, I do see a rheumatologist

[Jamie345]

Exactly like mine I started on 40m and that was last May /June last year when it all started nothing took the pain away but not as bad as it was so I don't understand the blood thing I'm tested every three months

[Jackoh]

I'm one of the folk whose blood work has always appeared below normal and I have GCAandPMR. My Consultant Rheumy does not go by CRP or ESR but symptoms only. Even when I have flared it makes no real difference to blood work. So symptoms trump.