GCA flare or not.

[Esmeruth7]

Saw rheumatologist today.2 weeks ago GP upped pred from 8mg to 40mg for 1 week because of temporal and jaw pain. GP did urgent referral to rheumatologist because I should have been seen in April.Rheumatologist said there is no such thing as a flare of GCA when one is already on pred. I asked him why I have got this head pain if it's not a flare, and he said its all down to the pred and I have to reduce by 1mg a month.

[DorsetLady PMRGCAuk volunteer]

Rheumatologist said there is no such thing as a flare of GCA when one is already on pred.

Of course there is - if you aren’t on the correct dose for your GCA on any given day. Looking at your previous post and what has gone on over the last few months, it’s no wonder you flared

I’d be ditching him and getting one that has more knowledge of GCA and has more empathy … or sticking with GP who obviously is more sensible.

[Esmeruth7 in reply to DorsetLady]

Thanks for your prompt reply. I have had dealings with him before and his mantra is "you have to get off the pred".

[DorsetLady PMRGCAuk volunteer in reply to Esmeruth7]

That might be his mantra-but is he going to be held responding if one of his patients go blind from GCA through his attitude -and negligence..

As you can tell people like that make me so angry..😠

So sorry you have to deal with him.

[PMRpro Ambassador]

"Rheumatologist said there is no such thing as a flare of GCA when one is already on pred"

He said WHAT? What rubbish!!

ncbi.nlm.nih.gov/pmc/articl...

says "Fifty-seven patients (36.5%) experienced ≥1 flares. Fifty-one (46.4%) of the 110 total flares (88 relapses and 22 recurrences) were experienced during the first 2 years after diagnosis. The majority of relapses occurred with doses of prednisone ≤ 10 mg/day (82.9%), whereas only 3.4% of relapses occurred for doses ≥ 25 mg/day."

So relapses can occur even at relatively high doses.

I would question how much the gentleman knows about GCA in the first place and he could certainly do with doing some reading around the topic. I would refuse to see him again - and your GP should contact the hospital on your behalf to express some concern.

[Esmeruth7 in reply to PMRpro]

Thanks for your prompt and very informative reply and as I said to Dorset Lady I have no faith in him at all. He blames pred for everything.

[Grammy80]

DON'T do as he says....I wish I could say I was shocked. I've been on Pred and Actemra since 2019 and have flared up and down and all over the place through the years. I took me four years to get to 10mg. Do not jeorpardize you vision, please. I finally go down to zero at the end of June and despite being on the Actemra, I'm in quite a flare.

Anytime I did reduce it was slow and I stayed at the new dosage for at least a month, often more. Trust your instincts and all the advice you have already received. Some physicians seem to see getting to zero as their success but not at the cost of your eyes! 💞

[Angelsmummy]

I flared at 20 mg and again at 7 mg with my GCA,bloke must be on a different planet or needs to go back to med school.IDIOT!!😱😱😱x🌼

[Nanalinboy]

hi , I have gca , and don’t take any medication for it, but have been suffering chronic headache for 7 days now , so , as I don’t take pressure, there is no way they can blame it on the headache , Dorset lady suggested you find another rheumy , I don’t even have any now , just a polish lady in the hospital who I see occasionally , , I need to find a new rheumy , but don’t know how

[PMRpro Ambassador in reply to Nanalinboy]

You get a new rheumy through your GP who will refer you. If you really have GCA and are not taking medication you are dicing with a high risk of loss of vision - total and irreversible. Or do you mean you had GCA in the past?

On your profile page you ask what is a Bio - it is a summary of your illnesses and journey up to joining HU for that particular illness. For us, we like to see age, sex, country of residence, journey to diagnosis and tests and your history of taking pred. It means we can answer any questions you have about your illness better and can always check our facts.

[Nanalinboy in reply to PMRpro]

some years ago , I was diagnosed with gca , the consultant I saw at the time gave me a prescription in the hospital , told me to go straight to the pharmacy and take 12 prednisone immediately , as he said I could lose my sight on the way home !! Scared the life out of me . I was on pred for 5 years and blew up like a balloon tapered off and am now free of pred. Haven’t seen that particular doctor since and seem to get fobbed off with, there is no cure comments when I go to hospital appointments now . I also have a meningioma of the brain , diabetes , hypothyroidism, fibromyalgia, polymyalgia . Eating is a problem too , the foods recommended for one of the illnesses aren’t suitable for one of the others , and they all seem to say eat oily fish and nuts which I can’t stomach either of . Sorry I went on a bit there , but I think I’ve just given up 🙄

[PMRpro Ambassador in reply to Nanalinboy]

OK, fair enough. But if you still have PMR then you are at risk for GCA flaring and someone should take you seriously. There is no cure for what? No, no cure for PMR/GCA, but there are good management options - and you don't have to blow up like a balloon. Cutting carbs makes a big difference to weight gain and developing steroid-induced diabetes.

[DorsetLady PMRGCAuk volunteer in reply to Nanalinboy]

You did say in a reply 3 year ago that you had GCA and a biopsy- so has that gone into remission or not? And if not, they why aren’t you on medication. If you’ve had a headache for 7 days, and a history of GCA you you know that needs to be addressed.

Who is the lady you are seeing in hospital? If it’s for one of your other health issues, then you do need to see a rheumatologist. PMRpro has explained what you need to do on that subject.

[Nanalinboy in reply to DorsetLady]

I haven’t a clue , nobody has mentioned it since . Yes , you’re right I am having a telephone appointment on Friday for another matter , I will certainly mention it while I’m at it . The lady consultant I’m seeing is I believe , a rheumy , but never actually does anything and I simply assumed there was nothing that could be done , so I just stopped asking 🤭

[DorsetLady PMRGCAuk volunteer in reply to Nanalinboy]

Think you do need to check on the headaches… it may be a flare of GCA, it may not, but you need to know either way.

You are correct in that neither GCA nor PMR can be ‘cured’ as such…but both can be well managed.

[Nanalinboy in reply to DorsetLady]

thank-you for your input Dorset lady . I will be speaking to doctor tomorrow , see what the outcome is 😘

[MiniSpec]

Rheumatologist said there is no such thing as a flare of GCA when one is already on pred.

He/she is totally wrong on that!! I've had GCA twice, both times while I was already taking Prednisolone for PMR. The first time it happened when I reduced my Pred dose from 11mg to 10mg per day. The second time was about a year later, when I reduced from 10mg to 9mg per day.

The first instance started less than a year after I started on Pred and happened as I slowly reduced my daily dosage from the original 15mg I started on. I was fine on 11mg per day, but when I reduced to 10mg per day I got a weird headache that lasted 24/7 and wasn't touched by any painkiller. Furthermore, my scalp became almost untouchable, and the veins in my temples became prominent.

I went to see the GP and he recognised it immediately. He put me on 60mg per day, and the headache and other symptoms went away.

About a year later I had managed to reduce my Pred down to 11mg per day once more, and very very carefully reduced to 10mg per day, as I was scared the GCA would flare up again. It didn't, but when I tried to reduce to 9mg per day the headache returned. So another trip to the GP ensued, and this time I was put on 50mg of Pred per day. Once more the symptoms disappeared quite quickly. Since then I've not had any repeat episodes of GCA, but I've been incredibly careful about reducing my Pred over the years to try and prevent any recurrence.

Regarding your Rheumy, if someone who purports to be an 'expert' on the subject can be so utterly wrong about GCA, then I think that person is in the wrong job, and I personally would find another consultant. I certainly wouldn't trust the first one again, and if I was feeling angry enough about it at the time, I'd probably write to the BMA about the utter incompetence of the consultant, and ask them to either force the person to get better educated, or strike them off until such time as they can show proper competence at their job.

After all, with blindness for you as a possible result of their lack of competence, they need to be made to understand that if you suffer, so will they.

[Esmeruth7]

Thankyou for your reply and sharing your experience. I will certainly not be seeing him again.