I have gotten so much help from this forum - it is so incredibly valuable. I welcome your feedback on the issue I am currently experiencing.
I've had PMR since 2018. I'm currently on 5mg prednisolone and 20mg of leflunomide (for almost 3 years). I have no other health issues. I work full time and am very lucky to be able to maintain the same active level of fitness pre-PMR.
My issue started at the beginning of November when my routine blood tests showed highly elevated ESR and CRP. They have been re-done and ESR is just below 100 (one test showed it above 120) and CRP just below 50. When I am having a PMR flare, my ESR is elevated but not CRP. I'm not having a flare at the moment - I don't have any PMR symptoms. I have seen my rheumatologist (one of the UK's PMR experts) who has ruled out other rheumatic causes. He said we have to get to the bottom of these levels, as they mean something is going on. I had a PET scan earlier this year that showed esophagitis - it wasn't followed up at the time as I didn't have any symptoms. My rheumatologist ordered an endoscopy (now) to have this investigated. I have had this done, but the Gastroenterologist said that while she could see inflammation in my stomach/esophagus she did not see anything that would explain the high ESR & CRP. I am awaiting the results of the biopsy she took. My GP has referred me to Infectious Disease who are doing further bloods/MRI and follow up. Nothing has been found yet. In the interim I was sent to A&E when my ESR was above 120, lots of blood tests but nothing found.
From the research I read, this is a sign of one of three things (90% of cases): RD, Infection, or malignancy. My rheumatologist has ruled out RD. Infection is being investigated, but nothing found yet. I have not discussed with my GP or rheumatologist how a potential malignancy is investigated/ruled out, but I will soon.
Has anyone experienced something similar? How was it investigated, any advice on how I should proceed?
Thank you very much!
Written by
Travisdecember
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ESR and CRP are so non-specific that many things can send them soaring to unusual levels - including a mild chest infection or chesty cold. If it isn't long since the PET scan it is less likely to be malignancy as that is its primary use in diagnostics although if you were on pred that may have interfered.
piglette has had persistently sky-high ESR/CRP for years. The doctors have given up reacting now!
Hello Travisdecember, I had consistently high CRP and ESR without any effects so Rheumatologist ordered PET scan which indicated LVV, which is now under control I think.
I'm not having a flare at the moment - I don't have any PMR symptoms. I have seen my rheumatologist (one of the UK's PMR experts) who has ruled out other rheumatic causes. He said we have to get to the bottom of these levels, as they mean something is going on.
My story is very similar to yours. In short, I started with PMR in October 2018, came off Prednisolone in December 2020, was diagnosed with GCA in February 2022,and was due to stop taking Prednisolone about a month ago. However, all during the time I was being treated with Prednisolone for GCA, I had a fluctuating CRP count, which was almost always too high. A month ago, my rheumatologist decided that I should have a PET scan to see what was going on. They found active GCA, mainly in my aortic area, and two aortic tears in the lower part of the aorta (b-dissection). It seems that the GCA, which I may have been harbouring much before it was discovered first time (in February 2022), had been "quietly" working away and causing damage. Fortunately, I have a b-dissection (rather than an a-dissection, which, according to what I told, can be a lot more serious. I have no symptoms from the b-dissection, have been told that it looks "peaceful" and will be followed up.
I feel that PMR/GCA still baffle many rheumatologists. I am very grateful to this forum, which provides a wealth of information about what is going on with different patients, the paths of which both concur and differ in their details.
Thank you for sharing this ncfaeeos. When you were first diagnosed with GCA in Feb 22, what led to the diagnosis? Is it correct to say that the GCA was not under control (from Feb 22 until the after the PET scan)?
I completely agree about this forum - it is invaluable to me.
It was a rather stretched-out process. In October 21, I started having severe headaches and this went on for about three weeks, during which time I visited the Emergency time, each time telling them that I was afraid I had GCA (having had PMR previously). Each time I was told that I did not have it. In fact, the fourth time, they CT scanned my head and told me all was well and that my diagnosis was "tension headache", even though I seldom get headaches normally. Anyway, the headaches subsided, but between Christmas 2021 and New Year 2022, I began to feel unwell - tired and with a low-grade fever. I saw a rheumatologist at the hospital at the beginning of February. She too said I did not have GCA but because my CRP count was very high, she sent me to Emergency where they found I had pneumonia and a UTI and I was admitted to hospital. After a week of treatment for these infections, the doctor on duty who had been reading my file, said he would like to bring in the rheumatologists again. An ultrasound examination revealed in fact that I did have GCA and I started treatment (Feb. 2022), which lasted until about 3 week ago, when I had expected to be out of the Prednisolone treatment but had to go back to 40 mg, which I am still on. I am feeling good right now.
Wow - that must have been both hugely frustrating and scary that GCA was being ruled out when you clearly had symptoms and PMR history. That's great that you are feeling good now. Thank you again for providing your background, its much appreciated.
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