Went hospital on 10th Dec, they treated me for GCA due to temple pain and inflammation of veins around that area, although CRP blood test at time was around 4. Precaution more than anything I think. Put me on 60mg of prednisone and pain in temple etc went after 2 days or so. I went to see Rheumy specialist on 18th Dec and he advised me to taper off steroids as very unlikely to be that, I’m age 48 too. I came off steroids around 31st Dec, still got strange feelings in head and had a blood test yesterday even though steroids more than likely in system, my CRP was 15.7 ? Going doctors again later but seems strange that high with steroids still around. Thoughts, happened to anyone else?
Thanks
Mark
Written by
andersom
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Hello. Oh if it were so simple. It it not uncommon to have normal inflammatory markers with GCA, I did. I have been on steroids since March 2017 after my symptoms responded within 2 hours of 60mg at age 54. Normally you are on the high dose for 4-6 weeks to get the inflammation under control before starting a taper. If they don’t think you have it, I don’t understand the logic of even starting Pred. If they are so uncertain that it wasn’t GCA (plus your positive response) then why taper you off so fast? Pred doesn’t cure it, it just keeps the inflammation at bay to avoid damage while your body goes into remission which takes years not weeks. Pred also has a short half life in the body, though some effects keep going for a bit, it is probably not doing much for the inflammation if it is still active. If you have GCA it will still be active and the withdrawal of the Pred means the inflammation is building up again. Your CRP has increased, plus the Pred was effective, so I would want to know from any doc, is if it isn’t GCA what is it? Untreated GCA risks your eyesight and stroke so what are they going to do to protect your eyes in the event that you are one of the rare but not unheard of GCA patients under 50. If you get any eyesight issues like spots, shadows, blank moments, hot foot it to ER/A&E because that may mean your eyesight is in serious trouble and could deteriorate rapidly. They should have a protocol for dealing with this because it is a medical emergency. I was sent to A&E by my GP with temple/scalp pain that was unresponsive to Paracetamol. I was picked out of the queue and within 30 mins I was given 60mg Pred even though my bloods were normal. My eyes were shutting down over a couple of hours. They gave me a head CT within the hour. I am now on 3mg daily 21 months later.
Hi thanks for the advice. Doctors within ACU at the hospital were being cautious, was what they told me. It was only later, about a week that the consultant didn’t think it was that and asked me to taper off the steroids. I’m a bit confused, but yes I will ask doctor later, if not that then what is causing the inflammatory marker to be high then ? Worried about eyesight etc more than anything. I wouldn’t expect it to be so high with steroids still in my system. Assuming 15.7 is high, was told should be <3 I think. Bit confused by it all really
If you stopped on the 31st, there won’t be any in your system to speak of and if it is GCA the inflammatory process will keep on going and there will be no Pred to counteract it once it has built up to a symptomatic level again. This is why you have to dose daily. Age alone is a bit of a flakey basis for ruling it out without better evidence.
When the doctor thought I had GCA they started prednisone right away as the biopsy was two weeks away. Safe to start in case it was GCA. And prevent blindness. And after two weeks it was confirmed.
The effect of the steroids is gone by now - the antiinflammatory effects is gone in a couple of days. If there is active inflammation then the CRP will rise.
I'm assuming that it was the ED/A&E who put you on high dose pred and then referred you to the rheumy who hadn't actually seen you at the time? It's a common story - especially when the rheumy concerned is one who doesn't believe people under 50 can develop GCA. They can.
I don't know much about them but they may be able to point you in the direction of a less bigoted person locally. If all else fails, and you develop the same symptoms as before, go back to A&E and explain what happened. The short period of high dose pred will have reduced the swelling a lot and then it will have taken a while to build up again. But your response to pred and return of symptoms and now the rising CRP suggests the ACU doctor may well have been right in their suspicions. It isn't unusual for the blood markers to lag behind the inflammation developing. Whatever - there is something going on.
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