Hi everyone, in an earlier post I mentioned that I was diagnosed with GCA last December. At that time my blood test marker was 95 however I had another test last week which was at 4. I very surprised and pleased about this but not complacent that this will last! I've been gently tapering my Pred following my Rheumatologist's plan from 50 mg and currently on 20 mg. Generally I'm feeling much better than I did two months ago. My muscle weakness is much less and I'm able to walk, work at the allotment and go on short bike rides without any adverse reaction.
I'd be very grateful for your thoughts and feedback about the ups and downs of GCA?
Thanks very much,
Written by
JaneEd61
To view profiles and participate in discussions please or .
All I can say is WOW! From 50mg Pred to 20 in 2 months! In 12 years GCA, have never had an ESR of 4. I will let the experts comment, but welcome to this forum with incredible people and helpfulness.
and welcome, good news so far, but just couple of points.
The blood test shows that the Pred is doing what its supposed to - reducing the inflammation, so that's good. Your reduction is quite quick, but it MAY get more difficult as you get to lower doses, and to actual dose that your body needs on a day to day basis.
So just be aware that your future reductions may not be so straightforward. Not sure how often you reduce, but if you can it's best to stay at each level for 3-4 weeks, that way you ensure everything is under control before you start the next taper. Should you get any symptoms returning a week or so after reducing that could be a flare, so don't let them intensify; go back to previous dose and nip any problems in the bud.
This is really good news, especially the feeling better part - it doesn’t always follow. Just take any further tapers steady, never reduce by more than 10% and use the dsns method described under tapering on this site or similar. You may have found your optimum dose for inflammation and symptom control. It is very early days for complete remission.
Hi, thanks for your reply, yes I feel so relieved to be well enough to do most of my normal things so it's good to be reminded that this may not last! Best wishes, Jane
It didn't feel like that at all, it's so good to hear a variety of responses which helps to keep my feet on the ground, thanks and good health from other, other Jane!
Snap! I was the same timing. CRP came down to 4 from 76 in just a few weeks of high dosage prednisone. Ups and downs? Always! But once I knew most of the nasty parts were the side effects of the prednisone and not the GCA, I was fine. Grin and bear it. As docs said, these will lessen, these will go. Almost back to normal after a year and a bit.
Glad to hear about your good progress. Please exercise with caution. Everyone is different of course, but I find it easier to hurt myself exercising at,6+mg Pred daily than it was at 15mg. I don't know if it is because the higher dose of Pred acted as an analgesic or because being on Pred for 14 months now has led to some muscle wasting or tendon weakness.
Gosh, I am really muddled this morning!. Your post clearly states ESR, then I go off about CRP. 2 different tests, both usually done. CRP is C-Reactive Protein. Measures inflammation in the body. Am also in UK.
ESR (UK, erythrocyte sedimentation rate) or sedimentation rate (US) is the rate at which the red blood cells settle to the bottom of a vertical tube, The presence of various proteins on the surface of the cells makes them stick together and the bigger heavier lumps sink faster. The proteins are produced by the liver in response to there being inflammation in the body - and one of the proteins is called c-reactive protein.
Neither of them are specific so just show something is going on, not what or where. And in 20% of people they are never raised in the first place.
Hi JaneEd61, I don't want to lighten your joy... I don't think anyone has mentioned that ESR test needs to be 'processed' within 4hrs of blood sample being taken. I had a reading of 8 when in fact it was on the rise as I was having a relapse.
I have my blood sample taken at a local centre who send it away to be tested. I recall that I had missed the first collection on that occasion and it was about 6hrs before the second.
I don't know where I discovered this but I remember it was a reputable site.
Please if anyone can confirm or otherwise I would be interested.
Perfectly true. ESR can be affected by all sorts of things and the conditions the sample is kept in and the time it takes to get to the lab are important. That is why many places prefer to do CRP which is also a very general sort of test for inflammation, telling nothing specific, but it is not affected as much by such factors, the age of the patient (though that is also disputed about ESR now, if it is high, there is inflammation and it isn't a normal part of aging) and so on. Both of them will shoot up in infections - colds and chest infections in particular. A chest infection will send CRP up to triple figures quite easily! Raised levels of either without symptoms of PMR/GCA should be monitored to see if there is a trend rather than generating a kneejerk increase in pred dose.
And for some people - for some reason the ESR/CRP won't rise again while they are taking pred at any dose. No-one knows why.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GCA blood test
My ACTH Stimulation test is to have 3 blood draws
GCA blood test
Reducing Pred after increase for suspect GCA.....communication problems.
An up date to my post 2 months ago ( what is feeling normal) 
