Started 50 mg in March/19 after GCA dx. Tapering has been going pretty well, with a few little hiccups along the way. In June had to increase pred from 25 up to 35, blood tests were normal, but headaches were returning along with jaw and scalp pain. Rheumy at that time said to go by symptoms, not blood results. That has worked pretty well till now.
Currently on second wk at 10mg, feeling actually pretty good. Had my blood test today (monthly) ESR was 25, (range 0-20) has not been above 12 since May/19. CRP was 52 (range <5) has not been above 6 since starting pred.
My question, not scheduled to see rheumy till end of March. Do I go by lack of symptoms on these blood test as long as I feel okay? Just not sure as this has not happened before.....thks for your help BTW stopped MTX in Nov. have not told rheumy about that, but do not think these results are a result of that?
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pugrescue
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Hello. As you probably know, these markers can be raised for other reasons unrelated to PMRGCA. Do you have any other focus of infection or a viral bug recently? It might or might not be a sign that GCA inflammation is building up even though it is not yet symptomatic. Others have noted on here their alarm at their markers going up but they feel great and some have raised markers most of the time regardless. As this is new for you I would want another test soon to see if it is going up or is just a blip or even error. That will give you more useful information.
Please do tell your docs that you are not taking MTX as their decisions are based on this which isn’t fair on them and could be detrimental to you.
A single raised result for the blood markers shouldn't lead to a kneejerk raising of the pred dose if there are no accompanying symptoms. They should be checked a week or so later to see if there is a rising trend - or another reason for them being raised like a cold or chest infection.
Any effect the mtx was having will be likely to persist for a couple of months - it is possible that it IS beginning to show up now even if there was no effect before. And you do need to tell your doctors.
Many thanks to everyone for your replies. Have an appt with gp next Thursday. Agree with you all in waiting to see if symptoms appear, and will do another blood test about 2 wks from last one yesterday, and go from there. Next rheumy appt is on March 25
Just to clarify, not trying to hide the fact that I stopped the MTX, but "my drs" so far have not been too involved or interested. The gp that I went to first dx me in March, and then he retired a few months later. The rheumy I was referred to is interested in discussing the fact that I am on too much pred. He ordered the infusion of AA first time he saw me, next time ordered the MTX. Have not seen him since, nor the new gp. No-one has asked about symptoms, side effects, blood pressure, blood sugar, etc etc. Kind of amusing in a weird sort of way. So I have been handling it more or less on my own. I have requisitions for any amt of blood tests I choose,, and when the results pop up on my patient portal, I try to make an informed decision. So 11 months in, I have learned a lot, read every article printed on GCA, and I think every post ever written on this forum.
Many thanks again for your input, do not know where I would be without it.
I have to say - I wouldn't be taking mtx that isn't being used properly - and that means at least monthly monitoring at first after a full screening before even starting it! It should also be explained to you in advance.
I totally agree, actually the rheumy did give me a repeating blood test for once a monthly monitoring,,,and I did that till a month after I stopped it. I did ask if I should have one ahead for baseline and he said no. None of my blood results changed during or after MTX. When I was there in Nov he gave me a script for annual infusion of zeledronic acid. I reminded him that I just had it in late April, and he said to take the script and use it when I wanted. It is sitting on the shelf, but not sure how it works exactly, but lab called and wanted to schedule, told them I couldn't take it for nearly 6 months and was not sure I was going to even then.
On the blood test for ESR & CRP, gp gave me the requisition for that the week after she came here, I think August, and left it open to use whenever I needed to. I have done that monthly till now. She is very nice, just brand spankng new out of med school, and maybe 16 yrs old LOL
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