Definitive diagnosis of GCA after 7 years

[Manihiki]

I was first diagnosed with GCA after having painful headaches and high inflammatory markers. I had a negative biopsy and no jaw claudication nor effects to eyesight but scans of my kidneys showed hypo perfusion (slow blood flow) of blood. My rheumatologist said it was atypical GCA and he worked on symptoms not test results. I have had ongoing battles dropping prednisone and along the way also developed PMR (but i think it was there already). I was on prednisone and lefludomide and mycophenolate were added in as steroid sparers which finally bought down the CRPs. Over the past year I have had problems with low haemoglobins and my rheumatologist stopped the lefludomide and mycophenolate as he was concerned that they were affecting my bone marrow. Almost immediately my CRPS have shot up and after a persistent headache a scan of my temporal arteries showed high levels of inflammation in the walls so they were two thirds narrowed. The 4mg of prednisone was clearly not sufficient to control the disease so I am back to more aggressive levels to get it under control again.

I have a very mixed feeling about the results because that negative biopsy always made me wonder if it was all in my head and not really what it was and wonder about whether I really needed the medication. Now it’s definite it doesn’t make it better and as my rheumatologist said it has been hanging around for 7 years which is unfortunate but thank goodness he took symptoms seriously rather than tests. This forum has also always helped and so I hope my story helps someone else when their diagnosis is elusive.

[DorsetLady PMRGCAuk volunteer]

Yes it is unfortunate that you’ve had it for so long - but the only thing you can take away is that because it was treated as GCA it may well have saved your sight. Had it been dismissed, you may not have been so lucky.,

As for your comment - ”always made me wonder if it was all in my head” - well it was, but maybe not the way you meant 😊

Good luck for future. 🌸

[Manihiki in reply to DorsetLady]

You are so right. Hypochondriac comes to mind when you have no evidence except symptoms and CRPs which go up and down.

[AtopicGuy in reply to Manihiki]

Indeed. Then there's the complication that a rise in CRP is normal when the body fighting an infection or injury.

[Manihiki in reply to AtopicGuy]

Absolutely but my rheumatologist always messages me with the rise in CRPs to ask if there is something else before jumping to conclusions. This time there was nothing else (like a cold or pneumonia) so he took the opportunity to rescan the arteries while I was on a low dose of prednisone.

[PMRpro Ambassador]

I suppose it does show that these medications do have some effect - but none on the underlying disease process which continues in the background. Really disappointing that after so long it hasn't started to burn out. At least your rheumy took it seriously.

[Manihiki in reply to PMRpro]

Yes we did discuss other biologics this time but they are unfunded and at $2000 a month and my thinking is that they will have some effect but not on the underlying disease.

My rheumatologist has always taken my symptoms seriously and responds immediately to changes in blood results and elevated CRPS by phone or email with advice or questions about other possible reasons and has trusted my response to whether it is a flare or not. This time because I was only on a small dose of prednisone he wanted to scan the arteries so the time fitted.

[Sophiestree in reply to Manihiki]

sounds like you have a great rheumatologist there. Horrible blow for you after all this time but better to restart now and hopefully you will start to feel a bit better in time. Very tough

[Manihiki in reply to Sophiestree]

Thanks and yes really a horrible blow to still be fighting it after 7 years of ups and downs but at least now we have a definitive diagnosis

[HeronNS]

Let us hope that this time the disease will finally lose its grip on you. Taper very slowly. You are fortunate to have a rheumatologist who has always taken your symptoms seriously. But it does seem that adequate pred is the solution for now. It's a medication which must be taken with care, but it really is a miracle drug! 🍀