CRP 2, still in pain.

[Maisiek]

Update; had my "last" telephone appt. with Prof Dasgupta( he's retiring in March.) I'd had sudden, painful jaw pain, with ongoing shoulder and hip pain ( excruciating to do up my bra) so upped my Pred, fearing GCA and knowing I had this appt. with him in a couple of days. The pain had gone in my jaw , and as my bloods (taken before the pain had showed a CRP of 2 he said to drop down to 3 again, where I had been before. The jaw pain has gone but I'm still in pain with shoulders and hips. His aim is that I stay on 2mg Pred long term and reduce by 3mg/2mg alternate days for a month, to get there, then 2 mg Pred. but I've been reducing with the DSNS method which suits me. His parting words were; Not all jaw and shoulder pain is PMR - presumably based on my bloods. Does this mean its just arthritis? What should I take for that? Should I ask my GP? Thank you so much for your help in advance ladies- what would we do without you? x

[DorsetLady PMRGCAuk volunteer]

Couple of questions/comments-

What dose did you go up to and for how long?

Did you tell him bloods were taken before you had pain? If you’d had them done during pain they may have shown a different result.

He may be correct about your pains, but I think I would be monitoring myself carefully especially if the jaw pain returns (that’s not PMR but it could be an indication of GCA) ….and not assuming it’s OA. You can take paracetamol for that alongside Pred or use Flexiseq…

[Maisiek in reply to DorsetLady]

Thank you: it seems to be just shoulders and hips now: I will try the flexi gel- great idea x

[PMRpro Ambassador]

The inflammation must be present for long enough and at high enough a level before the proteins that raise the markers are produced by the liver. If he isn't aware of that - who is likely to be? And if the blood was taken before the pain started - meaningless.

[HeronNS]

Maybe a visit with your dentist to rule out "mechanical" issues would be a good idea? Are your other pains similar to PMR before you started pred? Are you on any other medication which might have this as side effect?

[Maisiek in reply to HeronNS]

That’s a good point: I had a new denture and had done a lot of talking at a gathering of old friends! Jaw ok now , just shoulder and hip pains . Thanks x

[Hidden]

He's right, but it could be GCA....did he not mention the risk of GCA. My CRP/ESR is very low too but I'm experiencing pain in upper arms....to tong my hair is quite painful. Be aware of the symptoms of GCA. Mine were: Jaw claudication, tender head and top back teeth ached.With my symptoms I was told to take 40mg of which I've been using the very slow method ever since. Currently taking 6.5mg but very nervous as that's when GCA started, before on this mg.

Good luck

Anne

[Maisiek in reply to Hidden]

Thank you: I’m so reluctant to up the steroids again now my adrenals seem to have kicked in and I’m managing to lose weight on the Low Fibre diet. Interesting that he sees 2mg as a long term dose . X

[Hidden in reply to Maisiek]

Yes agree. none of us want to keep going back up. How do you know your adrenals have kicked in, did you have the test?

[Maisiek in reply to Hidden]

Test! Chance of anything would be a fine thing! No I just feel I have a bit more Oomph- but it would help if I could sleep: how dangerous is it to take two paracetamol every night ?

[PMRpro Ambassador in reply to Maisiek]

Two 500mg paracetamol once a day is about a third of the max recommended dose for our age (it is 4000mg for younger people). If that helps overnight - go for it!

[Maisiek in reply to PMRpro]

Thanks , I will x

[powerwalk in reply to Maisiek]

Oomph?? Whats that? Im joking. Good for you, id love a bit of oomph. Keep it going!!

[Maisiek in reply to powerwalk]

Technical term 🤪

[powerwalk in reply to Maisiek]

😁😁