GCA symptoms after one year of discontinuing prednisone

[Pamk1949]

I was diagnosed with GCA/PMR in 2017. I had a very slow taper of prednisone since, and now have been off for almost exactly one year. Last month I started to get temporary vision losses ( due to bending over in Yoga). My neuro opthamologist said eyes looked good, and that positional vision loss might not be GCA. He asked for a carotid ultrasound which was negative.

However recently I have experienced jaw claudication only while eating , have lost some weight, and ESR/CRP has risen to 22/33. My question is should I treat this as a flare, or start with 40-60 initially just like I did 5 years ago?

[DorsetLady PMRGCAuk volunteer]

Think you need to speak to a doctor who knows about GCA asap -it certainly sounds like it to me -but you shouldn’t be self medicating at those doses.

[jinasc]

You need to see a Doctor or go to A&E, as Dorset Lady has said.

You should never self-administer prescription medicine.

I am assuming you have some spare tablets (left overs) all tablets carry an end date.

[PMRpro Ambassador]

You need to speak to a doctor - and now, today. If you can't get hold of your GP to see you today - go to the ED/A&E. After a year off pred I wouldn't class this as a flare - it is a recurrance and needs proper diagnosis and management.

[SheffieldJane]

I think that a Rheumatologist may have a different take on this to the Neurologist. I would be seeking urgent advice. There are no second chances with GCA as you know. The really high doses especially need medical supervision. I might even prepare for a day in A&E if that would be the quickest.

[Pamk1949 in reply to SheffieldJane]

Thank you to all that have replied. I understand that a year between steroids can’t be treated as a flare, even though I’ve always had comfort knowing that I carried 60 mg in my wallet in case of emergency. Now I’m stuck in a situation where I can’t get an answer. I realize that maybe I shouldn’t take 40-50 on my own, it’s off to the er I guess. Thanks again for all of your help

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

It would be the most sensible option - whether you want to is a different matter- but always best to make sure IF it GCA it’s treated promptly and correctly. Please let us know how things go.

[pinks33]

I was in remission from GCA for seven months until recently, when I had a bunch of symptoms that made me seek help from A&E. My ESR was 49, and a recurrence of GCA was diagnosed. A&E were really helpful. They started me on 40 mg pred and I felt much better within hours, which would confirm the diagnosis. Unless you trust you GP on GCA matters, or have an accessible rheumy(I I didn't!), I would recommend a visit to A&E. I spent most of the day in ambulatory care but it was worth it.

[Telian]

It’s all been said and you need to see a doctor asap. Better to be safe than sorry. Best wishes.

[Triumph650]

Hi Pamk1949,I thought I was free from PMR and had no symptoms for 4 months, then one morning my right eye was fuzzy. My wife is a nurse and I said to her, hospital or optometrist? Knowing the optometrist has all the test equipment I went there. The young lady there was excellent. After the tests she sent me to the hospital to get referral for a CT scan at a major hospital 50kms away.

CT scan was inconclusive so was sent for an MRI, still inconclusive.

The optometrist knew a surgical ophthalmologist in next town and rang and requested urgent consultation that day, so off I go 80kms in the other direction.

Various tests were done and he found a swelling and restriction of the optic nerve where it leaves the eye to the brain. He said that only two things caused this, high blood pressure, which I don't have, or GCA.

So from there 50 mg of prednisone for a week and now 30mg for four weeks and which have a week to go. There is a very slight improvement, but not dramatic.

My blood tests were good and showed nothing, so I am guessing they are not the definitive yes or no with PMR or GCA in everyone, we all present differently.

Before I back to ophthalmologist next week I will be getting another blood test for ESR/CRP levels..

Now to you, are you happy with ophthalmologist, if not get second opinion. If you have a vision problem get your doctor to step up and help you get an urgent appointment.

Don't self medicate, prednisone is something I take begrudgingly because of the side effects.

Carotid ultrasound, which I also had, can detect but again not in everyone from reading on this forum. Also not all radiographers are trained or experienced with GCA detection. Mine was and was done with A&E registrar overseeing.

Don't just wait for your doctor to tell you, read up here and take the questions to him/her. I don't mess around with my doctor, I tell him where are we going with this and if you don't know then say so and refer me on to specialist.

I can tolerate the pain but not loss of sight.

Good luck

[PMRpro Ambassador in reply to Triumph650]

I'd say that 50mg wasn't enough - and certainly not long enough for someone with visual symptoms. And that degree of proof ...

Not sure carotid u/s would show GCA - if it did they would be using it more.