Pain following tapering

[Gurufjm]

Advice please . Diagnosed with HCA sept 2019 and tapered to zero August 2020. Now have pain in arms, back of neck on one side , thumb joint and a general feeling everything being too difficult. GP ran the usual tests... no sign of anything abnormal so apart from X-ray for thumb joint was nicely told to go away. Has any else experienced anything similar?

[DorsetLady PMRGCAuk volunteer]

Your previous post are a bit contradictory - some you say you were diagnosed, others say only suspected GCA - so did you have a definite diagnosis?

If so, then most on here would say - a very fast reduction - and therefore your GCA (if that’s what it is) is still active.

The fact that you have no increased blood markers may be a red herring - symptoms usually come in advance of them, so maybe if symptoms continue, another blood test in a month’s time may show something different.

Did you have raised markers previously? Up to 20% of patients may not.

Could be start of PMR (if bilateral) or can you account for one-sided neck/thumb issues?

[PMRpro Ambassador]

Just to add to DL's comments,

Whether it was GCA or PMR you had in Sept 2019, to have got off pred entirely in 11 months is extremely optimisitic. Then stopping pred in August and to have symptoms now is fairly typical of someone for whom a very low dose is enough to manage the inflammation - but zero isn't.

[Gurufjm in reply to PMRpro]

Thank you.. I thought my GP was a little optimistic but he seems very keen to keep me off steroids. The pain started at 4 mg and has slowly progressed. My GP says it is GCA but there was no testing done other than markers and a fried who is a senior dr advised me that I should see an expert . Think it is time for that now.

[PMRpro Ambassador in reply to Gurufjm]

They always are keen to get/keep patients off steroids - but unfortunately the GCA/PMR doesn't sing from the same textbook and steroids are the mainstay of management!This is a chronic illness and it takes time, it cannot be rushed. Your GP has been very remiss if he is so confident it is GCA - he is out of his depth and GCA definitely belongs in the hands of a consultant rheumatologist at least once for the diagnosis to be confirmed. Markers are only one criterion in a very complex disease and something like 1/3 PMR diagnoses made by GPs are incorrect.

If it is actually "just" PMR, even as a symptoms of GCA, you might just need 5mg - after a few days of maybe 10mg to clear things out a bit. But your GP needs to learn a bit of humility - he was very keen to say GCA but in that case he must treat it appropriately. And he hasn't.

[Gurufjm in reply to PMRpro]

Thank you again ... you have given me the confidence to challenge . I must admit. As a person who rarely goes to a GP I felt like I was a timewaster. My experience on steroids was very positive and I want to get back to feeling that well again!!