The visit to my new Rheumatologist was unusual, she looked at me and just said, you don't have PMR or GCA within 5 minutes of consultation. No poking or touching. I presume because she had no results to go with we wait for tests to come back.
So as to my previous post on the tests that I have just had and waiting results on, I ask members a few questions to take along the my next consultation.'
I only want quick shorts answers or "yes" or "no" please. Only PMR or GCA answers, not interested in other ailments. (sorry)
1. Where did your first PMR pain start.
2. Did you have elevated ESR when first diagnosed?
3. What was the figure?
4. Did you have elevated CRP when first diagnosed?
5. What was the figure?
6. Did these results drop back to normal marker range with prednisone or other meds? Y/N
7. With GCA, how many have eye problems or permanent or partial sight loss?
8. How was GCA diagnosed, (headache, temporal artery pain, sight loss.)
9. Male or Female
Thanks for your time, I will let you know how I go.
Regards to all
Peter
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Triumph650
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2. Both within normal limits but raised above my personal normal.
3. 16 & 8 as opposed to 4 & 3
4. Back to normal with Pred
5. No lasting issues with eyes but got permanent hearing loss and tinnitus
6. On diagnosis day scalp, ache in temples, feeling spaced out, pain down back of neck and back of skull. Increasing tunnel vision. Bulging vein over eyebrow. Pre-diagnosis day a range of odd symptoms and fleeting eye abnormalities. Diagnosis made on symptom profile plus resolution of symptoms within hours of 60mg of Pred. Biopsy 8 days later neg but had been on Pred. PET scan 3w later neg but had been on Pred.
1. Did your first PMR pain start in your feet ? if no where. - my shoulders
2. Did you have elevated ESR & CRP results when first diagnosed? Yes
3. What was the figure? 126 ESR and 130 CRP
4. If yes to elevated readings, did these results drop back to normal markers with prednisone or other meds? NO but have dropped. They do go up every so often for no particular reason
5. With GCA, how many have eye problems or permanent or partial sight loss?6. How was GCA diagnosed, (headache, temporal artery pain, sight loss.)
1. No. Hips/thighs and by belated diagnosis neck and shoulders
2. Told "normal for my age" but later found they were actually elevated and
3. I was not told the numbers
4. Yes, but not completely healthy normal for several years
5. No GCA diagnosis but have had minor GCA-type symptoms, first when PMR undiagnosed for over a year and a second time when suffering a major relapse after several years comfortably at a very low dose. All symptoms resolved quickly with fairly low dose pred.
6. had temporal biopsy, but results were inconclusive. Diagnosis from symptoms, persistent fever, scalp tenderness, headache, fatigue, repiratory issues, inflammatory markers, responsiveness to pred. See my profile for more comlete details
1. Did your first PMR pain start in your feet ? if no where.
Shoulders, hips, thighs (subsequently). Unable to reach back to dress myself, or get off the loo.
2. Did you have elevated ESR & CRP results when first diagnosed?
Yes.
3. What was the figure? CRP 42
4. If yes to elevated readings, did these results drop back to normal markers with prednisone or other meds? Yes.
5. With GCA, how many have eye problems or permanent or partial sight loss? No. Head pain.
6. How was GCA diagnosed, (headache, temporal artery pain, sight loss.)Had a temporal biopsy but GCA was not present, nor with ophthamologist exam. Now tapering from 60 mg Pred and down 40 mg.
1. No, knees and right hip, lower back and pelvis.2/3. Yes. Both went up to around 80.
4. Yes, they went down to single figures within 2 weeks. Now creeping up again.
5. GCA presented with headache in the occipital area that lasted 3 weeks before I consulted the GP and got onto pred, jaw ache on chewing, difficulty opening my mouth wide enough to eat, neck ache, ear ache, weight loss. No eye issues.
6. Temporal biopsy, negative, but GCA diagnosed due to above symptoms.
1. No, around my hip girdle and in thighs. Found it difficult to get in and out of bed.
2. Yes.
3. Can't remember ESR figure but CRP was around 180.
4. For PMR, yes; for GCA, not quite (with prednisolone).
5. I did not have eye problems.
6. I had a constant low-grade fever, a strange feeling in front of my left ear and a very small sensitive patch on my scalp. Was diagnosed through ultrasound. It took 4 months to come to the conclusion that I had GCA.
1. PMR started in lower back after severe bout of the flu, then spread to whole of pelvic region, and up spine to neck and shoulders
2. Yes, my ESR was raised.
3. ESR was 63, but should normally be around 6 (for me).
4. ESR has now dropped through use of Prednisolone to more or less normal (for me). However, since the day after I started on Pred I've had Tinnitus.
5. Had GCA twice, both times no sight loss, but constant blinding headache.
6. Very bad constant headache that pain killers didn't touch, as well as untouchable skin on scalp and swollen veins in temples.
7. Male (aged 59 when symptoms first appeared, diagnosed after 9 months and put on 15mg of Pred per day, and now at 72 still on 3mg per day of Pred)
I have also found that either through PMR or because of Pred, my strength, stamina, and energy levels have dropped significantly.
Also, after being on Pred for around 5 years I developed very painful feet, particularly the soles of my feet. I thought I had plantar fasciitis, but it went away on its own after around 18 months without any treatment, so I put it down to being either the PMR or a side effect of Pred.
my PMR started 5.5 year ago. An allergic reaction to a drug. It started in my shoulders, neck and hips. I couldn’t walk very well. My ESR or CRP was 88.
I am now on 1.5 Pred. Just saw a Rheumatologist a few weeks ago and he didn’t prod or poke just asked about meds. Personally I thought it was a waste of time but my GP kept putting referrals in because I was stuck on 1.5 Pred and she wanted me off ASAP.
I keep wondering if it would be ok if we took a poll of our PMR/GCA group to see how many of us are taking statins. I would surely be interested to know.
Yes, I am aware of the muscle pains. My CPK is not elevated, although I may bring this up to my Rheumatologist on Monday. I stopped my statins for 2-3 months when I first started feeling PMR like symptoms back in 2021. It did not seem to make a difference, the pain continued despite being off the statins. Still worth mentioning to the doctor.
See my bio. I firmly believe three years of Simvastatin took a toll on my body. Whether that was a direct or indirect cause of my getting PMR, who knows. But they were the exact same pains as when I eventually was struck with PMR.
1. Upper right arm (proceeded to shoulder and hip girdle)
2. Don't know. Told ESR not considered important nowadays (!)
3. Don't know
4. Yes
5. 54
6. No, I don't think so. Last test figure was 8
7. N/A (though I did have jaw pain when chewing when first diagnosed with PMR. This was considered to be a jaw problem ie not connected to PMR/GCA. After a few month on Prednisolone, pain stopped)
1. Where did your first PMR pain start. Top of legs, as though I had done too much excerise, spread to shoulders, arms, now goes into hands, lower back and backs of knees
2. Did you have elevated ESR when first diagnosed? Don't know what results were at initial diagnosis but following recent blood test it's 30
3. What was the figure? Now 30
4. Did you have elevated CRP when first diagnosed? Yes
5. What was the figure? Don't know/not told
6. Did these results drop back to normal marker range with prednisone or other meds? Don't know
1. GCA - Constant headache for 3 months before consulted GP who immediately did blood test.2. Inflammatory markers above 90 - not sure whether talking ESR or CRP.
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A couple of GCA questions
PMR/GCA
PMR/GCA v GCA/PMR
PMR/GCA or not
