Not again !

[Pamela60]

Five and a half years down the line.

I can't believe I finally finished prednisilone on the 30th April only to start with symptoms of polymyalgia!

I was diagnosed with GCA then PMR five and a half years ago. During that time I've had two strokes and recurrent tias.

I've developed osteoporosis and now starting with bilateral cataracts.

I'm still using tocillizumab injections and methotrexate to no avail.

I don't know whats going on, I keep a diary, and have done since day one.

Since having covid in October 2020 the pains in my hips gave been niggling but put it down to my osteoarthritis.

This last two weeks my shoulders and hips have worsened, but my thumbs are really hurting, could this be another symptom ?

My bloods are fine as usual ,so GP says ummmmm probably not PMR. !

I've had an xray to discount osteoporosis involved fracture.

My feeling is that its back , the pain getting out of bed and attempting to walk the stairs is awful.

Surely I would see a change in my markers when it feels this bad ? Or does meds hide that ?

[Jampad]

I don`t know enough to offer any advice or help but just wanted to say I hope you get better news soon.

[MrsNails]

If you are still on TCZ that affects the CRP & would show as ‘Normal’ that’s one of the ‘Risks’ if you get an infection it wouldn’t show up in the blood markers.

Someone who takes TCZ will know more, this is just something l remembered from a lecture l went too.

Kind Regards

MrsN

[PMRpro Ambassador]

If you are on TCZ, then your ESR and CRP are meaningless - the TCZ stops the body producing the cytokine that causes the inflammation and raises the ESR and CRP. It is a basic fact that ESR and CRP cannot be used to assess disease activity when the patient is on TCZ - that seems to have passed someone by! Into the bargain, TCZ is only 100% successful in getting half of patients off pred - the other half continue to require a low dose of pred. That is because TCZ only targets one mechanism for creating the inflammation, biologic drugs only work on one thing and there are 3 possible causes for the inflammation in GCA.

Even without tocilizumab, the markers can lag well behind the symptoms, you can have symptoms with a small amount of inflammation - it needs a critical level to trigger the production of the proteins that give those raised markers, And up to 20% of patients are acknowledged to never have markers that go above the normal range - though that doesn't mean they aren't raised for them. Mine normal ESR is in low single figures, it chugged along at 16-18 for weeks during a major flare but no-one noticed as that is still within the range quoted by the lab. The normal range is the range of reading found in a very large population - 10,000+ - not that is OK in a single person.

Aching wrists and pain at the base of my thumb are infallible predictors of a flare for me.

It really isn't uncommon for 1mg pred - or less - to be enough to keep things under wraps but going to zero is a step too far and within weeks, or at most a few months, the symptoms start to creep up on you. Prof Dasgupta told us last summer that he often keeps patients at 2-3mg indefinitely as it reduces the risk of relapse. I think that is a tacit admission that in many people PMR lasts a long time at a low level - something that is accepted over most of mainland Europe.

[Pamela60 in reply to PMRpro]

Thank you . Invaluable info to pass onto my GP.