What do I ask/say to my rheumatologist this Thursday?

[Greytree]

I am in the U.S. and have a telehealth meeting with my rheumatologist on Thursday. It will be the second meeting since seeing her in person Oct. 4, getting my blood tested and her diagnosing PMR after seeing the tests. She put me on 15 mg Prednisone daily.

The history she took on that first meeting was thorough. She seemed open and interested in what I had to say and I felt better on the Pred.

I proceeded to go downhill in December after a vaccine booster and being reduced to 10 mg Pred. She said I was fine because new blood tests did not show marker problems. I pointed out that I obviously had PMR before it showed in the markers because of blood tests when my regular doctor tried to figure out my problem (chronic fatigue, aches and pains). The Rheum increased Pred back to 15 mg

I now have what seems to me indications of Giant Cell Arteritis. Dull headaches (not pounding migraines) that seem to move around: temples, sides of head, base of skull. More fatigue. Tenderness of scalp at times. Unexplained weight loss (11 pounds in six week, but now with effort, I've put half back on). Swollen veins on either temple (in the summer for three days).

As a result of my concern, she tested me again last week. It showed CPR at <0.1 mg/L and Sedimentation rate at 24. She said those were "normal" so it was "very unlikely" I had GCA. But, I want to feel more certain that I don't have GCA.

Any suggestions on what to ask or say to her are greatly appreciated. If I am over-worried, tell me that, too. Thanks for any help.

[PMRpro Ambassador]

"Unlikely" possibly - but not impossible. It is said up to 1 in 5 patients has normal markers and being on pred can also lead to the markers not rising as one might expect. A doctor called Hayreh has done a lot of work about what he calls occult GCA where there are no symptoms at all recognised prior to visual loss. Actually, the sed rate is on the high side - many now take the range 1-20 as "normal" (others say up to 30) and that doesm't mean it is normal for you - "normal range" is the range of readings found in 95% of a large population (10,000 plus) of nominally healthy persons. My normal sed rate is low single figures, it ran at 16-18 for weeks during a major flare and no-one noticed.

[Greytree in reply to PMRpro]

As a matter of fact, Sedimentation was 8 in 2016 way before any of this started. It was 27 in June when I was hurting and fatigued. It didn't put up a red flag for regular doc. Testing again with rheumatologist in Oct. it was 48. She said the earlier 27 was normal. Nov it was 15 after Pred has started. Early December it was 9 and then 8 in late Dec. Seems like the 24 a week ago could indicate a problem. What do you think?

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

My ESR was 30 first time it was tested - and deemed to be satisfactory so no action taken by GP. It is within the so called “normal range” - but as PMRpro often says, it’s not necessarily everyone’s normal.

Despite all my symptoms it was never tested again by GP surgery - bad move - 18 months later I had lost sight in right eye due to GCA… diagnosed in A&E…

a case of too much reliance on blood tests and not treating the symptoms.

Issue is, a raised ESR can be caused by lots of things - it just shows inflammation in body, but not what’s causing the inflammation.

Your readings six months ago may have indicated PMR/GCA, but it could have been something else completely.

That’s why symptoms override bloods in most cases in relation to our illnesses.

[PMRpro Ambassador in reply to Greytree]

Both times there is an identifiable trend - and if a patient has symptoms but normal markers or slightly elevated markers, it should be checked a week or two later. If the sed rate was raised for other reasons like a cold, as it may be, then it should have stayed the same or gone down again. In PMR it is likely to go up.

Obviously YOUR normal sed rate is in single figures. if it is in the teens there is a potential problem and if is higher - I think it confirms it. Even if you aren't having symptoms yet - they could well come. Have you reduced your pred dose since you had the low sed rate in late December? Or just before?

[Greytree in reply to PMRpro]

It has not been reduced since then. *Nov. 16 Prednisone was reduced by 5mg to 10mg

*Nov. 23 Moderna Booster

Seemed to go downhill with ailments accumulating

*12/8/21 CRP was <1.0 and Sed was 9

*12/23/21 CRP was <1.0mg/L and Sed was 8

*Dec. 28 dose was raised by 5mg back to 15mg

*1/28/22 CRP was <1.0 and Sed was 24

[PMRpro Ambassador in reply to Greytree]

I think that what you need more than anything is 1mg pred tablets and adjust your dose 1mg at a time. You are supposed to be titrating the pred dose to accurately identify the lowest effective dose - and there is no way you can do that with only 5mg tablets and 5mg changes in dose. At the very least, cut the 5mg tablets and go 2.5mg at a time but even that isn't ideal.

One dose is plenty to keep the inflammation under control - but 5mg less isn't and over time the inflammation that isn't combatted each day builds up and eventually causes symptoms. You need to start with the dose that is enough and reduce is SLOWLY in small steps to find the dose that is right for you at present.

Your doctor can very easily do a urine test with a dipstick test that would suggest if you have a UTI. But I think the main culprit is a dose of pred that is slightly below what you need. That needs sorting out because once you get into a yoyo pattern with the dose, it gets harder and harder to control the inflammation.

[Greytree in reply to PMRpro]

Rheum Doc in TeleHealth "visit" did agree that one-size-fits-all Sed rate range is far from ideal. Individuals vary and many things can throw it off. She said the CRP is better indicator. Said she is always on lookout for GCA but doesn't think I have it. I've mentioned sore scalp, moving headaches, vision issue more than once (right eye is slightly blurry compared to other) but she doesn't pursue or ask about it. Should I see an optometrist or an opthamologist to ask what the problem might be there? She did allay my fears overall somewhat and said we should communicate again in six weeks, when another blood test would be done. She said to get in touch with any further questions and concerns before then. How does all this sound??

[PMRpro Ambassador in reply to Greytree]

CRP may be better - but mine never budged except one day when I had a really bad episode of atrial fibrillation - not that I knew at the time that was what it was. I just felt awful!!! And it was back to normal the following week,

Seems a lot of suspicious things to just ignore. It might be worth getting a retinal exam at the optometrist - long term poor blood flow to the optic nerve would show up as an enlarged optic disc but that isn't conclusive either.

[Greytree in reply to PMRpro]

Thanks. I'll set up an appointment.

[PMRpro Ambassador in reply to Greytree]

Better one or two checks too many than one too few ...

[Greytree in reply to PMRpro]

Thanks. I just made an appointment with an optometrist for Monday.

[PMRpro Ambassador in reply to Greytree]

That's a good start.

[Greytree in reply to PMRpro]

Saw the optometrist. It was helpful. He checked eyes out, said pressure was ok (16). Showed blown up eyeball/veins and what it all meant. Seemed familiar with GCA, Prednisone effects. Appointment in year or sooner if I had new concerns.

[Greytree in reply to PMRpro]

I haven't had any colds but I wonder about a possible sinus or vaginal/urinary tract infection. I don't know that I have any of those.

[artfingers]

Yes, get the 1 mg prednisone, easy to get in States and you can even easily break them in half to slowly, slowly reduce later on at lower doses.

[Greytree in reply to artfingers]

Thanks. Doc gave me 1mg tablets. Reduced from 15mg to 13.7 starting last Friday.