Questions on PMR & GCA

[Triumph650]

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

[PMRpro Ambassador]

1, No - my first sign of PMR was being unable to sleep with my arms above my head but I did develop severe foot (and hand) pain subsequently

2/3 No - my ESR had never been above 18 but that was very raised for me

4, They fell to low single figures with pred

5/6. PMR only although I have had transient GCA symptoms on 2 occasions lasting a few weeks

7. Female

[SheffieldJane]

1 No, groin and shoulders, bilateral

2 Yes, but some people don’t

3 I don’t know. My Rheumatologist was more interested in symptoms.

4 I believe they normalised

5 My GCA is extra cranial and not affecting my eyes so far.

6 An ultrasound scan ( specialist) showed the “ halo affect” in my armpit arteries. Prompted by feeling generally unwell on 3.5 mgs of Pred for PMR.

7 Female

Good luck!

[Bluey-1]

GCA - click on my name to read my bio to answer your Qs about GCA

[Koalajane]

1. In hips and shoulders

2 elevated ESR

3 in the 30s

4 yes

5 no GCA

6

7 Female

[DorsetLady PMRGCAuk volunteer]

1. Didn't have PMR

2. Yes

3. ESR 58 - CRP 26.5

4. Yes

5. Irretrievable sight loss in right eye

6. Sight loss [long story, but you don’t want it here -if you do, look at profile]

7. Female

[nallufl24]

1. Have GCA only

2/3. Yes, over 100 for both

4. Fell to normal on high doses of prednisone but gradually went back up as I tapered. Actemra was then used which made them low numbers

5. No eye issues

6. Temporal biopsy

7. Female

[Bcol]

1. No, literally everywhere, carried into hospital.

2. Yes.

3. ESR 54, CRP 131.4

4. Yes

5. N/a only PMR

6. N/a

7. M

[SnazzyD]

1. No PMR, just GCA

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.

7. Female 54

[PMRCanada]

1. PMR started in my knees, bilateral and eventually moved up to quads, hamstrings, hips, upper arms and shoulders.

2. and 3. Slightly elevated ESR, CRP 29

4. Yes, only elevated again while flaring

5. and 6. n/a, don’t have GCA

7. female

[piglette]

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.)

7. Male or Female - female

[JanetRosslyn]

Hello Peter.

1. Yes, PMR started in feet!

2. Yes.

3. ESR 44. CRP 27.6

4. Back to normal with Pred. Raised again 3 years later when developed GCA, then back to normal with increased Pred and Methotrexate.

5. No eye problems with GCA.

6. Extensive GCA diagnosed with raised ESR and CRP, confirmed by temporal biopsy and PET-CT scan. No pain anywhere!

7. Female.

[Kendrew]

1. No. I started with stiffness in shoulders and hips and aches and pains in arms and legs.

2. No..... my CRP and ESR levels were within normal parameters.

3. ESR - 4. CRP - 4

5. I don't have GCA

7. Female

[HeronNS]

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.

7. female

[Dochaz]

1. Top front of thighs both sides and neck and shoulders also bilateral

2. Yes

3. VS 92, CRP 80

4. Yes, on Prednisone only

5. None of the "usual" GCA symptoms. Thickening of abdominal aorta wall spotted on CT scan

6. TAB to confirm GCA/LVV

7. Female

[Jackoh]

1.No shoulders and legs

2. No

6. Headache - more like stabbing pains in side of head

7. Female

[Daffodilia]

No - Yes- Don’t know- Think so - N/a - N/a - Female - Good Luck

[Preacherball]

1. no

2. yes

3. 91, 144

4. yes

5. no eye problems, fortunately

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

7. Male

[Alazarin]

1. In my thighs, groin.

2. Yes

3. over 100

4. Yes pred did the job

5.I have/GCA. No sight problems, thankfully

6. I diagnosed myself, stiff neck, headache, jaw claudication. Tender temples.

Ultra sound confirmed it.

7.female

[Miserypants]

1. Hips2. Yes

3. CRP 254

4. Yes

5. Yes

6. Eliminating other things via blood tests. 2 weeks in hospital. Tender scalp and behind ears, jawdication, high fever and wt loss. GCA and PMR.

7. F

[AuthorJ]

1. No my neck

2. Yes

3.ESR 82 CRP was elevated too

4. Yes took just a little while.

[Seablue22]

1. Flu like symptoms then aching thighs/knees followed by neck pain and scalp tenderness

2. Yes

3. CRP 265 ESR 123

4. 6 months on Prednisolone CRP normal, ESR still slightly raised at 29

5. No GCA

6.

7. Female

[Deyazlex]

1. No, all over like I’d over exercised

2.Yes

3. Unknown

4. Still unknown

5/6 N/A

F

[Seacat30]

1. No the pain was in my neck

2. Yes

3. CRP 10, ESR 45

4. Yes

5. PMR not GCA

6. Not GCA

6. Female

[alangg]

1. No. both thighs and slowly went everywhere from there.

2. Yes.

3. I don't remember but I know it was high.

4. My GP wasn't concerned with figures. She wanted me to manage the pred dose according to the level of pain and discomfort (unusual I know!).

5. No GCA

6. No GCA

7. Male - aged 59 at diagnosis. Nearly 3 years to become pain and pred free.

[Missus835]

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.

7. Female

[Broseley]

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.

7. Female

[Amerloque]

1 No- started hips lower back and pelvis

2 Yes

3 CRP was 115

4 with Prednisolone dropped to 6 in 3 weeks then 0 in 6 weeks

5 n/a

6 n/a

7 male

[larkthebark]

1. no, first pain in both hips, unable to roll over in bed easily

2. CRP elevated unsure about ESR

3. CRP was 54

4. Dropped to 11 after 4 weeks on Pred

5/6. Not applicable to me

7. Female

[artisam]

1. No, shoulders bilateral

2. Not really - but high for me

3. 16 was as high as it got

4. Yes

5/6 no GCA

7.female

[PMR2011]

1. No, Hips, shoulders, neck

2. Yes.

3. Medium high for US measurements

4. Yes, with Pred

5. No,

6. Generalized symptoms: low grade fevers, deathly fatigue, hoarseness, dry cough, sky high markers while on Pred for PMR

7. Female

[ncfaaeos]

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.

7. Female.

[MiniSpec]

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.

[Longtimer]

1 Lower legs, 2 No hardly raised, 3 same as 2, 4 No hardly, 5/6/7....PMR only....8.....9 Female

[nuigini]

1. Bilateral shoulder pain, misdiagnosed as torn rotator cuffs

2. Yes

3. 78

4. Yes

5. 69.9

6. Yes

7&8. N/A (PMR only)

9. Female

[Suffererc]

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.

Hope all goes well for you 😊

[Jamiesons]

1.Shoulders, groin, buttocks Bilateral plus extreme fatigue 

2.Yes

3. 75 ESR

4. Yes

5. 68.4 CRP

6. LOWERED 

7. NO GCA

8. N/A

FEMALE

[Suffererc]

Neck, shoulders

Yes. 88

yes back to normal within hours after Pred.

No GCA. Although had jaw pain when chewing at 12.5. GP uppped dose to 30 mg for two weeks .

Female

[Hosers2]

1. Severe pain in shoulders, hips, wrists, fingers.

2. Yes

3. 32 ESR

4. Yes

5. 104 C-Reactive Protein

6. Yes (in three months)

7. No GCA, but developed Macular Degeneration in one eye.

8. N/A

9. Male (age 71 at onset).

Note: I developed the same pains five years earlier when taking Simvastatin. They went away after dropping statins.

[LIVEORDIEHEREIAM in reply to Hosers2]

Hosers2, Same here!

[Hosers2 in reply to LIVEORDIEHEREIAM]

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.

[SMH4CRNA in reply to Hosers2]

Been on statins since age 21yo, and now 50yo. Why do you ask? Is there a correlation between PMR and Statins?

[PMRpro Ambassador in reply to SMH4CRNA]

A couple of statins have PMR listed as potential adverse effects and they do cause muscle aches and pain.

[SMH4CRNA in reply to PMRpro]

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.

[Hosers2 in reply to SMH4CRNA]

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.

[ChinaWuntoo]

Bilateral shoulder pain, misdiagnosed as torn rotator cuffs

Groin and buttocks.

Inflamation markers raised.

Dioagnosis (after telling GP that my sisiter has PMR).

Freedom from pain = 6 hours.

Case proved.

[Whitner]

1. Pain in hip treated as bursitis. Then both shoulders and neck then upper thighs.

2. CRP 5.1 and ESR 10. Prednisone 20mg gave relief in 3 days. Numbers decreased next month.

3. No GCA but have had short instances of jaw and shoulder pain flare fixed by upping pred temporarily.

4. On pred 3 years. Diagnosed at 66.

[Sharitone]

1. Lower back/hips. Then R Shoulder, then L.

2. Yes

3. 74

4. Yes

5. 52

6. Yes, eventually. Pred initially controlled symptoms, but not when reduced beyond 15mg - then Actemra.

7. No sight probs.

8. headache, stiff neck, weight loss, fatigue, eventual PET/CT scan

9.F.

[musclesinflamed]

1. Where did your first PMR pain start.

Bilateral upper arms and shoulders

2. Did you have elevated ESR when first diagnosed?

Yes

3. What was the figure?

36

4. Did you have elevated CRP when first diagnosed?

Yes

5. What was the figure?

5.6

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?

So far, no GCA

8. How was GCA diagnosed, (headache, temporal artery pain, sight loss.)

n/a

9. Male

[pata63]

1. Where did your first PMR pain start. Lower Back and Hips

2. Did you have elevated ESR when first diagnosed? not tested at diagnosis, one test a decade earlier, one a year into treatment

3. What was the figure? 9-Dec-09 (6) then 20-Nov-20 (5) a year after PMR diagnosis and treatment

4. Did you have elevated CRP when first diagnosed? Yes

5. What was the figure? 23 (my normal for the previous decade is < 2)

6. Did these results drop back to normal marker range with prednisone or other meds? Yes

7. With GCA, how many have eye problems or permanent or partial sight loss? no GCA

8. How was GCA diagnosed, (headache, temporal artery pain, sight loss.) no GCA

9. Male or Female M

[tempusfugi]

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)

8. N/A

9. Female

[ackagee]

1. Shoulders, Hips, Knees - DX PMR on 17 Sep 2017

2. Yes

3. 29

4. Yes

5. 36

6. Yes - normal after 3 weeks

7. No eye problems or partial sight loss

8. Severe Headache - DX GCA on 13 Jul 2020

9. Male - 78 years old, New Zealand

Full story in my bio

[crafty_grannie]

1 Hips, shoulders, neck then everywhere, loss of weight.

2. Not diagnosed - pain explained as fibromyalgia.

3/5. Numbers weren’t checked.

6. After GCA diagnosed, high figures then dropped with Prednisolone. Don’t know numbers.

7. Lost most of the sight in right eye permanently.

8. Loss of sight, headaches, pain when chewing.

9. Female

PMR subsequently recognised.

[Nextoneplease]

1 Shoulders and wrists

2 Yes

3 56

4. Yes

5 30+ ( can’t recall precise figure)

6 Yes

7. Yes, blurred vision, much more so than for example with dry eye

8. Facial pain, tender scalp, headaches, tinnitus, blurred vision.

(Ultrasound was clear after three weeks on 40mg).

9. Female

Hope this helps 😊

[SMH4CRNA]

1. Where did your first PMR pain start.

Legs, pelvis & shoulders

2. Did you have elevated ESR when first diagnosed?

Yes

3. What was the figure?

37

4. Did you have elevated CRP when first diagnosed?

Yes

5. What was the figure?

3.20

6. Did these results drop back to normal marker range with prednisone or other meds? Y/N

No, continues to be elevated even today. ESR high 67, CRP 3.70

7. With GCA, how many have eye problems or permanent or partial sight loss?

N/A

8. How was GCA diagnosed, (headache, temporal artery pain, sight loss.)

N/A

9. Male or Female

Male, 50yo...Yet to be officially DX due to age.

Do we get the statistical results of this survey?

[Lottieandlola]

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

7 &8 N/A.

9. F

[Saxsoprano]

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.

6.steroids - initially 60 Mgs - immediately removed headache and lowered inflammation.

7. No eye problems.

8.GCA - headache, jaw claudication, weight loss, fatigue. GP diagnosis confirmed by hospital (Rheumatology) ultrasound and temporal biopsy.

9. Female aged 75 at onset.

[Merryfield]

1. Started in right shoulder, then left, then right hip. Within two-week period

2/3/6. Sed rate started at 128%, in 30s now w/steroids

4/5. No CRP test done

7/8. No GCA

9. Female 73