I had the appointment with a rheumatologist 2 weeks ago and left feeling somewhat apprehensive. She reviewed the prior blood tests ( which were only 2 weeks before the appointment) and said it looks like PMR and asked me to rise up from my chair in the exam room 5x with my arms crossed on my chest and asked if there was any pain in My legs, shoulders, and pelvis area? There wasn’t any pain in those areas so I told her about the headache and sore temples and neck pain I was having at times. She indicated that the prior blood tests did not point to GCA ( ESR 53 CRP 58 ) but they were going to run tests through their lab again that day. I was concerned about the ANA titter results from the test 2weeks ago and she they would look for specific antibodies in their tests. I showed her the bruises from the prednisone she said that’s common for people on prednisone. I mentioned the little crusty patches above the hair follicles on the forearms and told me to have the dermatologist watch them.
The tests came back last week and to my surprise they didn’t detect the speckled pattern and the nuclear patterned went from 1:320 to 1: 160. All other ANA ‘s normal.. (Qual , RNP ,Sm, dsDNA , SSA,SSB, Sd-70,Jo-1, Cent B, Histone) the only out of range test was NEUTROPHILS %. 71.6 % ( normal range = 40 - 60 % . My sinuses are bad this year and I’m thinking that’s why? She started the tapering from the 12.5 mg I was at to 11 mg on Saturday the 22nd and 1 mg per month till the next appointment for another blood test and a bone scan. She seemed to have a plan and said their blood tests would give us betters direction. Their test was more comprehensive compared to the GP’s ( 91 areas) but I’m a little frustrated as I have the results but won’t be able to discuss them with her till May! Starting to write a novel now so I’ll stop for now. Oh, tested positive for Covid this week, 2nd time in 3 yrs. This time it’s a little nastier than last but almost gone now. ( 5 days) it’s making the rounds here in the US hope it’s better for you .
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She indicated that the prior blood tests did not point to GCA ( ESR 53 CRP 58 )
well I'm sorry to disagree with her views- but mine showed ESR 68 CRP 26.2.. and that was after being undiagnosed with GCA [no PMR] for 18 months and irreversible sight loss...
Symptoms are the key, bloods are not the be all and end all that some doctors think.
Thank you, I am watching my symptoms very closely and especially my vision. Their test and the last GP’s test showed both ESR/CRP levels to be normal. Can there be damage to the vision with those test being normal? I wonder what antibody she is looking for if the test for GCA is the biopsy of the vain?
This is an excerpt from study re non raised markers-
While the majority of patients with GCA have elevated markers of inflammation at clinical presentation, normal ESR or CRP has been reported in a small proportion of patients at diagnosis. The frequency varies between 4–14% depending on the study and the definition of normal values (7–9). In one study, 22.5% subjects with polymyalgia rheumatica or GCA had a normal ESR at diagnosis (10). In a population-based study of newly diagnosed GCA, 5.3% of 167 patients had an ESR less than 40 mm/hour (7). A meta-analysis evaluating the diagnostic value of clinical findings among patients suspected of having GCA estimated that about 4% patients with GCA present with normal ESR (9). Few studies have evaluated normal CRP at diagnosis, with estimates ranging from 2% to 14% (8, 11–13). In one study of 119 patients with GCA, only 3 subjects (1.7%) had a normal CRP at the time of GCA diagnosis, of whom 1 subject (0.8%) had a normal ESR and CRP (8). Other studies which have evaluated CRP at diagnosis have included subjects with PMR and/or GCA, reporting a prevalence of normal CRP to be between 1.2% and 20% (11–13). However, since these studies also included patients with PMR, it is difficult to draw conclusions regarding the subset of patients with GCA.
Thank you for the study transcript. Maybe someday I’ll the expertise to unravel the crucial facts from these studies. ( the conclusions always seem to be so generalized ) until then I hope to be able to rely on the experts here. What I have surmised is that a diagnosis of GCA is almost never a 100% sure to be correct, even with a TAB. The dangers of the biopsy are many and consequences could be very serious. It looks like they are leaning towards imaging DUS/MRI/ Pet-CT. Percentages of the scans are relatively high in possible confirmation but still subject to false negative results and even with the technicians experience and physicians interpretation. I’m assuming it’s the same problem with most of the other autoimmune diseases. I can’t help but think this delay in diagnosis is very detrimental in treatment of the condition. There’s already been a lot of water under the bridge in my case and all I can do is taper down to a small enough dose for the Pet-CT to be of any use in diagnosis. Will prednisone prevent further damages from GCA for now?
When I was diagnosed with GCA my ESR was 54 and my CRP was 9. The GCA was confirmed with a temporal artery biopsy while I was in the hospital being treated for transient vision loss. My vision was saved with treatment.
It sounds as if you’re receiving thorough and considered testing from someone who knows what she’s doing. I’m in France and typical waits for a doctor are a couple of months.
Interesting that you’re writing as you go through this. I am learning to paint classical realism so a similar process of focusing and being totally alert. This is made harder by the fatigue that comes with PMR - I follow the cycle of each day and grab the good times if I can and once into it rise above it all for a while. Feel completely done in afterwards though.
Thank you for the reply, I tend to dive into health problems as issues to be corrected or managed optimally for the best out comes. At 62 I had a congenital heart defect ( bicuspid aortic valve ) repaired and made it a mission to remodel and restore my heart back to normal size and function through exercise and lifestyle. At 75 I still do the elliptical trainer 30 min 3 days a week @ 10k meters level 5. I was at level 10 till the PMR started effecting my legs. For the heart folks BP is 128/72 PR is 56 EF 63% My Goal now is to tapper off prednisone and find out what autoimmune disease I have and treat it into a remission/non-advancing state with as little drugs as possible. I must say this has been more frustrating then the heart issue as it will require more medication and opinion based treatment during its acute phase. This site is invaluable in my effort to deal with this and is very much appreciated. Thanks to all here.
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