I had a very high CRP result last December. Consequently I was started on 40 mags of pred. Doctor explained that I didn’t need a biopsy for GCA as often the test was was not always accurate.
This is confusing really as I do have scalp tenderness and frequent headaches and tenderness around my eye area. I’ve had fibromyalgia for over 20 years, so Initially I’ve blamed the fibromyalgia or possibly sinusitis for this daily discomfort.
So, how is GCA diagnosed then?
Hello, I can understand your frustration and diagnosis of GCA can be unsatisfactory if one is hoping for the absence of all doubt. The trouble with the biopsy is that even if the artery still has giant cells it may not be in the sample taken or the bit analysed. Your doc is right that once you start Pred the chances of seeing giant cells decreases rapidly. Even with full blown GCA and my sight going my biopsy 8 days after 60/40mg Pred it was negative. They can see other features but not necessarily the foolproof yes or no you want. So, they have to go by symptoms and response to Pred. I tried to convince myself it wasn’t GCA in the early weeks but a few hiccups with Pred absorption soon told me otherwise. Also I was one of the many who have no raised inflammatory markers so again, it was back to what was actually happening, the history and Pred response. If the Pred doesn’t work completely the decision has to be made as to whether it is GCA or whether the dose isn’t high enough.
Thank you for taking time out to reply. My CRP initially was 127, hence the initial dose of 40 mgs being considered high. I have just tapered to 7mgs starting today. Still wonder if I also have GCA? I am keen to get the criteria and if I meet, it particularly as my father and grandmother went blind with glaucoma.
40mg is the bottom end of the dose range for GCA - a patient with jaw claudication or visual symptoms should be started on a higher dose, sometimes as much as 80mg or even a 3 day course of pulse therapy with 100mg/day intravenous methyl pred.
Whatever the result at that starting dose - maximum relief of symptoms is crucial - is the level of symptom relief you aim for while reducing the dose. You should never feel worse at the end of a reduction than you did at the start. If you do, you go back to the previous dose and wait a bit before trying again.
You are NEVER reducing relentlessly to zero and never let any doctor try to tell you that you are. You are tapering the dose to find your optimal dose: the lowest dose that manages the inflammation. That is not the same thing at all.
Hi,
By the symptoms, and yours sound fairly typical.
Doctor is correct, the biopsy very often is not accurate, and that may be because it’s done after you’ve started the Pred and there’s no inflamed cells to show, or more likely the small section of artery sampled doesn’t contain any affects cells. Some hospitals can conduct an ultrasound to aid diagnosis, but it’s not readily available.
If you are still getting head issues then maybe you aren't on a high enough dose - what are you on?
Thank you for your concern. My doctor has me tapering and today I started on 8 mgs. So, still wonder what is the criteria for GCA. Have I got it along with the PMR and if so is the treatment different?
Hi again,
Whether you have PMR or GCA or both the treatment is the same. Start on a high dose of Pred (GCA much higher than PMR) to mop up inflammation- then reduce to find the lowest dose that gives you the same level of relief as initial dose.
Personally I would say you have reduced much too quickly and have gone below that dose.
Did virtually all pain go initially? And if it did can you remember what dose you were on when it came back?
Do you have any leeway with your dose? If so I would go back up to 15mg for a week and see if that helps. You could then drop back down to 10mg and continue reducing more slowly. If not then you need to speak to doctor and tell him you still have symptoms.
Just as a matter of interest what has been your tapering regime?
I agree, 40 to 8 since December is crazy fast!
Even if it’s “only” PMR let alone GCA!
I despair of GPs sometimes.
Absolutely agree with this and all the advice above.
You really need to get an appointment and have a thorough talk through your symptoms and discuss increasing to a dose that works for you again with your main doctor, then sticking with it until you feel confident that you are improving and capable of beginning a much slower taper again.
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