My ESR blood test for GCA is back to normal after... - PMRGCAuk

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My ESR blood test for GCA is back to normal after 2 months...

JaneEd61 profile image
24 Replies

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,

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JaneEd61
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24 Replies
karools16 profile image
karools16

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.

JaneEd61 profile image
JaneEd61 in reply to karools16

Yes you're right, so many helpful and informative people here, including you, best wishes for your health, Jane

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Jane,

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.

Other than that, good luck.

JaneEd61 profile image
JaneEd61 in reply to DorsetLady

Hi there, thanks for all this and for helping me to be realistic about what's happening with Pred and my GCA, all best, Jane

PMRpro profile image
PMRproAmbassador

Yes, I find 50 to 20 since December not exactly "gentle" - but if it worked that is fine!

Your blood levels being normal only shows one thing: you are still taking enough pred to clear out each day's new batch of inflammation.

I do hope it continues so well - but from here I would be reducing the size of the steps down and sticking in the new dose for 3 to 4 weeks at least.

JaneEd61 profile image
JaneEd61

Hi there, yes maybe the taper has been faster than I realised, good advice, thanks, all best, Jane

SheffieldJane profile image
SheffieldJane

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.

JaneEd61 profile image
JaneEd61 in reply to SheffieldJane

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

SheffieldJane profile image
SheffieldJane in reply to JaneEd61

I don’t mean to rain on your parade in any way. I just want your wellness to last.

Best wishes other Jane.

JaneEd61 profile image
JaneEd61 in reply to SheffieldJane

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!

sondya profile image
sondya

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.

Good health, Jane.

JaneEd61 profile image
JaneEd61

Great, that's really encouraging, yes it's good to know what's GCA and what's Pred, all best to you too, Jane

Hindags profile image
Hindags

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.

JaneEd61 profile image
JaneEd61

Yes I'm definitely taking it steady but it's just great to get out in the fresh air, thanks very much, all best, Jane

karools16 profile image
karools16

Should've said CRP, not ESR.Brain fog.

JaneEd61 profile image
JaneEd61 in reply to karools16

Know the feeling! What is CRP? My GP and Rheumatologist refer to the GCA blood test as ESR but that's UK/Scotland might be different elsewhere? Jane

karools16 profile image
karools16 in reply to JaneEd61

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.

JaneEd61 profile image
JaneEd61 in reply to karools16

That's helpful, I wasn't aware that there are 2 tests, so much to understand! Jane

PMRpro profile image
PMRproAmbassador in reply to JaneEd61

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.

JaneEd61 profile image
JaneEd61 in reply to PMRpro

Thanks that's very helpful, Jane

granny-b profile image
granny-b

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.

PMRpro profile image
PMRproAmbassador in reply to granny-b

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.

granny-b profile image
granny-b in reply to PMRpro

Thanks. My rheumatologist has switched to CRP. There is no end to the oddities you come across in this GCA and PMR life.

JaneEd61 profile image
JaneEd61

Ah the plot thickens, how interesting! Thanks, will check with my GP when I have my next test, all best, Jane

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