Hi

Hello everyone. I’m joining this community for support/advice/information because I’ve now been diagnosed by elimination with Temporal Arteritis. Current dosage of Prednisolone is 22.5mg per day (taken as 25mg & 20mg doses on alternate days), reducing very gradually over the next however many months. At the moment I’m still aware of the underlying headache symptom of the TA and wonder if this is to be expected? My GP has said that if I experience a recurrence if the symptoms I should increase my steroid dose again but this is comparatively low level and my last blood test was ‘normal’.

[PMRpro Ambassador]

Welcome to the club of which no-one wants to be a member!

If you have been diagnosed with "temporal arteritis" by a GP I think you should be pushing for an emergency appointment with a rheumatologist. Giant cell arteritis (a more accurate term as it doesn't just affect the temporal artery) is a serious systemic disorder that is beyond the ability of most GPs to manage. Most have never seen a case.

I hope you were started at a much higher dose than 25mg - that is a PMR dose. The low end of the recommended GCA dose range is 40mg - and you need to stay at it until the symptoms have resolved well and your blood markers ESR and CRP (if applicable, 1 in 5 patients don't have raised levels) have fallen to normal range and have stabilised. I also don't see why you are alternating the doses - there are perfectly good 1mg tablets whether you have been put on ordinary plain white uncoated pred or on the enteric coated coloured pills. This is fairer to your body - big changes in dose from day to day can be uncomfortable.

I'm surprised I'm the first to respond - everyone must have stayed up to watch the tennis!!!

[Primarose]

Hi NitaOD

I have only just joined this amazing help forum.

Sorry to hear that you have GCA.

I was finally diagnosed with GCA in January 2017. I was started on 60mgs of pred and it more or less took the pain away within hours. I did get head pains which woke me up in the early hours of the morning but that soon resolved.

There will be others with a lot more experience than I have who will be able to help and advice you.

Have they asked for a Temporal artery biopsy?

[Hidden]

Hi NitaOD, Welcome and I am so sorry you've had to join us! I have both GCA & PMR; diagnosed in 11/2018. I will let the experts respond to your specific questions, but agree with PMRpro, (RE: I hope you were started at a much higher dose than 25mg) I was put on 40 mg, increased to 60mg. Suffered a flare (during a taper down) and was put on 80mg! I have been tapering down for last several months and I am currently on 30mg.

22.5 seems low for GCA... when were you diagnosed? My EST and CRP have ALWAYS been near a normal range.

Best of luck to you. You're in the right place!!!!

[DorsetLady PMRGCAuk volunteer]

Hi Nita,

Could do with a bit more background information, for example when diagnosed with GCA, what starting dose etc.

As PMRPro rightly says if you have GCA then your dose is not high enough, and if it was diagnosed by your GP you should be seen by a Rheumatologist.

He may then refer you back to GP, but he is the expert and needs to set you a plan.

[Hidden]

Hello again everyone and thank you thank you for your comments!

My diagnosis has taken a while because the waters were muddied by my lifelong migraine attacks & current treatment for anxiety. However, my GP was brilliant and as soon as he saw my blood test results he put me onto 40mg Prednisolone per day & sent me to the eye clinic at hospital. They in turn referred me to an eye consultant who basically said I was too young to have Temporal Arteritis (which I understand is aka GCA) & refused to do a biopsy because he 'knew' the result would be negative. He instructed me to come off the steroids over the next week, but did refer me to a neurologist colleague for consultation. I got down to 20mg several days later & my symptoms returned with a vengeance. My GP re-did my blood test & it was worse than before. He was very unhappy and put me straight back onto 40mg per day. In the meantime I got a private appointment with a rheumatologist. He has also been brilliant. He felt that I did have TA/CGA even though I did not have all the symptoms (no jaw ache or tender scalp). He could not find a Temporal pulse on the right side by the way. At this stage I was on 25mg Pred per day & my blood test came back normal. I have since been following his proposed plan of a month at 25mg, then a month at 20/25mg, a month at 20mg & so on. But this week, the first at 25/20mg has not been entirely successful as I have been suffering from the TA symptoms - low level but definitely there. So. Today I've decided to increase back up to 25mg per day (which he said I could), make an appt to see my GP again when I get home as I'm currently away & go with a list of questions to ask!! If necessary I will go back to the rheumatologist too. Oh & in the middle of all this I also had my consultation with the neurologist who also agreed that I have TA, couldn't find a Temporal pulse, & referred me for an MRI which I've had & which was clear!! Phew.

So sorry this is longwinded but hope it helps with the context of my original questions. Thank you again.

[SnazzyD]

The experts will be along again I’m sure. It is difficult for my brain to get a handle on the exact time frame but it seems an awfully fast taper. I was on 40mg for 6 weeks (4-6 weeks is standard) before dropping to 20mg over two months, then about 2mg per month with a 5 week stay on 18mg for a two week holiday. From 15mg I’ve dropped 1.5mg per month. My inflammatory markers were never abnormal but I had all the symptoms, and I was 54 when it started in March last year. 16 months later I’m on 5mg which I gather is pretty good. I have come close to a flare a few times I think due to illness, huge stress, lack of sleep etc. Apart from the 4-6 week initial blast, I have been making it up but it’s not far off the standard taper. When a Rheumy said in September that I should be on 8mg instead of 17 or whatever it was I said that I hadn’t had a flare and wasn’t that better than going too fast and having to go back up to 40mg? They leave me alone now because I am too single minded to bother with and once I was below 6mg it was all smiles. Don’t forget that your initial inflammation has to be brought under control and all you’re doing is finding a dose of Pred that prevents damage while your body decides when it is going into remission. Finding out your level is the hard bit but made easier if you don’t taper so fast that you can’t tell what’s withdrawal and what’s a flare. Good luck!

[piglette in reply to SnazzyD]

I moved from a rheumie because he said that flares were part of the process and something you had to put up with and seemed more interested in my hurtling to a lower rise than managing my symptoms. One say he will have his come uppance.

[PMRpro Ambassador in reply to piglette]

I often wonder what it is that makes them so sure that flares are part of the process and unavoidable. Given that it says in the literature that the primary cause of flares is reducing too far/too fast - you might think it would occur to them that going a bit slower might have a beneficial effect?

[piglette in reply to PMRpro]

I assume it because all their other patients have had flares too, due to their ineptitude!