PMR diagnosis

[Bummed24]

I am a 68 year old female who was diagnosed with PMR in December. I began on Prednisone 20 mg, and responded well, so my Prednisone was reduced to 15 mg for one week, followed by 10 mg currently. CRP 41.8, ESR 45.During that time my headaches continued, and possibly worsened. They are mostly constant, with a pain level of 3-4. I have sensations occasionally of mild scalp tenderness, but if I press on my scalp, the tenderness does not increase. The ER doc said I have GCA, after consulting with a rheumatologist and ordered 60 mg Prednisone for two days.

Two days later I saw my assigned rheumatologist, and he emphatically said I don't have GCA. Meanwhile, I am having trouble again with moving my arms and legs for about six hours each morning. I am moving like a ninety year old.

I suspect I was weaned too quickly. And should I pursue troubleshooting for possible GCA? Suggestions welcomed.

This website, I am finding is SO helpful. Thank you from the bottom of my heart!

[cycli]

Sounds like you do have GCA and have another rheumatologist who should know better. Has he taken you off Pred.? if not what is your current dose and what does he say you have?

[Bummed24 in reply to cycli]

Current dose is 10 mg. of Decadron He says I have PMR, but not GCA.

[piglette]

Even if you have PMR and not GCA reducing that fast ie by 50% so quickly would have left me lying in a crumpled heap. I would go for a second opinion.

[123-go]

Has the rheumatologist ordered any tests/scans/imaging? Without this he can’t possibly know for sure that you don’t have GCA unless he has a crystal ball.

Your reduction of Pred from 15mg for one week to 10mg was way too fast: no wonder you are suffering, likewise 60mg for a mere two days.

Please read the following link from FAQs:

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

I would query why one rheumatologist [albeit symptoms described by a 3rd party] suggested GCA yet another one said no….

Further investigation required for sure.

Not sure how long you were on 20mg.. but a reduction to 15mg for only one week and then a further reduction to 10mg is bonkers.

Whilst some patients with PMR can get headaches, they do need to be properly investigated - whether for GCA or some other reason.

[SnazzyD]

I would want to know what they are basing their negative diagnosis on. Also, why they went against a colleague. No doctor can say categorically that you don’t have GCA without any evidence. Often it is made on the balance of probability even after a negative biopsy. Even blood tests with low inflammatory markers aren’t foolproof but yours were up! I was diagnosed on the strength of symptoms and good reposnse to 60/40mg Pred which I was on for 6 weeks before they even thought about reducing. Now your dose is at a level this soon that even people with just PMR likely be having a flare. Third opinion needed.

[PMRpro Ambassador]

That rather precipitate reduction in dose from 20 to 15mg for only a week probably has messed up things.

To be fair - the ER conclusion should have been "very possibly GCA" and given the symptoms, perfectly reasonably. Your assigned rheumy obviously has a cracked crystal ball - he can't be that certain it isn't after a couple of days at 60mg without some imaging of some sort. What you DO have is almost certainly PMR that is undermanaged at 10mg, you need to start again and taper far more slowly. But I somehow don't see that happening with your assigned rheumy. Not sure what to suggest since I doubt your GP would overrule the rheumy. You could discuss it with them though.

[cycli]

You have all the advice needed for now Bummer24. You need a speedy chat with GP and up the dose for now. Take time to reduce. Slow and steady is best. Change your Rheumatologist. I did.

[Bummed24]

I value all of your advice and experience. Thank you so much. I am working on second/ third opinion for better management.

[Bummed24]

Thanks all, for your helpful advice. It armed me with information and courage to return to my GP today. I was advised to return to 20 mg. Prednisone which is the dosage I began upon diagnosis last month. And to increase to 30 mg. if no improvement in two days.

I also received a referral to a different rheumatologist! Unfortunately, my CRP crept up on the meantime to 49. ESR dropped to nearly normal.

My GP thinks the increased dosage of Prednisone should help eliminate the headaches.

I failed to mention I did have a head CT with contrast while in the ER last week. No stenosis noted.

[PMRpro Ambassador in reply to Bummed24]

But the CT with contrast doesn't necessarily show the effects of GCA so keep an eye in those headaches - and any other potentially GCA signs.

[Bummed24 in reply to PMRpro]

Yes. I am learning that from my reading. Good advice. Thanks. Will keep tabs on the headaches.I am pretty much on a crumpled heap today from a relapse due to the under management by the afore mentioned rheumatologist but I now have the dosages to help myself. I will return to my initial 20 mg. dose and bump up to 30 mg. if not feeling better in a few days. Sound reasonable?

Or, because he had me on 60 mg. X two days last week, and then dropped me to 10 mg for the past week, should I go higher initially?

[PMRpro Ambassador in reply to Bummed24]

Not sure - but you are likely to feel dropping from 60 to 10mg overnight, even after only 2 days! You don't ever really want to go to a higher dose if you don't need to but given the ER thought you needed 60mg, maybe you do need more. I would try 20mg first with a low threshold for going up to 30mg. You sound to have a fairly sensible GP!

Do you have any other symptoms? Sweats, feeling fluey, facial pain, jaw discomfort when chewing????

[DorsetLady PMRGCAuk volunteer in reply to Bummed24]

Agree with PMRpro - try 20mg initially and see how that goes...

[Bummed24]

No jaw discomfort. Some low level facial sensitivity. My GP felt it's due to myalgias from the ongoing low level fevers, and that the 20 mg. dose of Prednisone will alleviate it. (Or increase to 30mg if things don't improve in a few days.)

[PMRpro Ambassador in reply to Bummed24]

Low level fevers are actually not that common in PMR alone - and suggest the patient has GCA or LVV as the cause of their PMR.

[Bummed24 in reply to PMRpro]

Good to know. If fevers and headache don't go away in a week or two, pursue more testing?( My ESR is now nearly normal, but CRP up to 49).

[Bummed24 in reply to PMRpro]

What imaging would you suggest to rule out GCA?

[PMRpro Ambassador in reply to Bummed24]

You can't really rule it out with a single test. Prof Vanessa Quick in Luton is working on an algorithm to assess likelihood of GCA which will be very useful.

There is temporal artery ultrasound which is similar to TA biopsy in scope but non-invasive and which can also be used to visualise the subclavian and brachial arteries which can also show the halo sign, For LVV, PET-CT is used but is less accurate when you are on higher doses of pred, above 10mg or so. It is a combination of signs and symptoms but if there is any suggestion of GCA or LVV, a GP is totally out of their depth and you need a good rheumatologist who has access to the various tests.

[Bummed24 in reply to PMRpro]

Good to know.

Last evening I developed unmistakable scalp tenderness, throbbing on my scalp and a return of ear lobe pain when I lay my head on its side. And as I mentioned earlier, my PMR symptoms returned with intensity earlier in the day.

So I took a deep breath and took 40 mg. of Prednisone. Two hours later, I am feeling somewhat better already, if that's possible. I am waiting to hear back from a new rheumatologist to get an appointment. And plan to continue with the 40 mg. for a month, before tapering, unless advised differently. I sure don't want any perfusion issues.

[DorsetLady PMRGCAuk volunteer in reply to Bummed24]

Hope you get appointment asap -and yes stay at 40mg until medical advice received.

[cycli]

Agree with PMRpro. i have both and its been a long hard trip to get where i am now. It took a long while to diagnose and i'm lucky I didn't go blind. Don't wait too long to see an improvement 60 to 10 reduction in 2 days is medically negligent. That rheumy needs reporting. Take control, read up and be proactive. You know your body best.