I've been taking prednisone for PMR for a year--had no clinical signs of GCA, but have had persistent very high CRP levels for several months. Finally my rheumatologist sent me to a specialist a month ago for an ultrasound of my arteries and he confirmed unequivocally that I had GCA. I could see the inflammation in the arteries very clearly.
I'm now on 35 mg of pred and 8 mg of methotrexate now--and feeling quite unwell. Headache and pounding heart and fatigue. Wondering if the methotrexate is causing bad side effects : ( It's hard to get helpful info from rheumatologist about this unfortunately. Any insights, shared experiences greatly appreciated.
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Carnivoreyogi
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What sort of levels are your CRP? I have always had a very high CRP. The lowest has been 29 and it has been over 100. The doctors now say it is just me, but I would like to know why it is so high.
That's what my rheumatologist told me too in the summer when I asked him about it. Mine went up to 90 at its highest and averaged around 30 for several months. It just seemed weird to be on prednisone and still have such high CRP levels. But I guess there was incipient GCA going on--and since I didn't have any of the typical symptoms I went undiagnosed. In December and January I had really persistent pressure headaches and I think that, plus the high CRP made him decide to refer me for an ultrasound. Did your doc rule out GCA for you?
Please be aware: Although CRP is usually measured in mg/L, it is sometimes measured in mg/dL, which is different by a factor of 10. Nothing stops other units also being used.
That's a whopper! This study of people attending hospital for lots of conditions, including all sorts of infections and autoimmune disorders, found a maximum of 346mg/L. Over 200mg/L "was a marker of sepsis"! You're not speaking to us from beyond the grave, are you? 😉
Oh wow--that is very high, and totally expected after getting a whole new hip! (Congrats on that) CRP is such a vague inflammatory marker. Glad your doc ruled out cancers.
I had similar problems at the start of my treatment. Pounding heart and extreme fatigue, but not the headaches. I too have aortitis but I was started on 15mg of Methotrexate. It certainly sounds like your symptoms might be Methotrexate related. If you read the accompanying leaflet, it lists just about every possible side effect under the sun.
I've been on it since September and the heart racing and pounding has settled right down now. I was referred to cardiology for palpitations and these symptoms, so far no indication that there's any heart problems as ECG and ECHO perfectly fine.
I can have a perfectly fine ECG trace and my ECHO is also OK. If you aren't having an episode of arrythmia during the few minutes they are recording a standard ECG then it won't show the electrical fault. It is a photo compared to a video recording. An ECHO only shows structural causes - not the electrics.
Both medications can cause heart pounding and fatigue - but I would be a bit concerned about headaches….they could also be a sign that GCA is not fully under control. So you do need medical input.
Hi. Sorry to hear that you're struggling. I've only PMR but started methotrexate at the end of 2023 as a steroid sparer. It gave me mild stomach discomfort, headache and extreme exhaustion. The rheum increased the folic acid from 5 to 15 mg a week and that has helped with the tiredness. I took my methotrexate (15mg) yesterday and, so far I feel fine. Maybe getting used to it?
One of the effects of methotrexate (MTX) is to exaggerate pred effects - the one they are looking for is the antiinflammatory effect but it affects other things too. Like for me I developed the constant hunger usually blamed on pred and gained weight which I'd never had before! I am also sure that MTX made my atrial fibrillation worse. The fatigue I had with MTX was overwhelming - after a month I had to stop as I couldn't function.
I got awful palpitations and pounding heart with Pred. My GP put me on Betablockers to calm things down. It worked and now I’m on a lower dose of Pred I don’t feel the need for them anymore. I’m also on Methotrexate but all of the other symptoms began before.
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