GCA - split dose or not ??

[Rimmy]

Hello All

I am wondering if on a high dose of Pred for GCA of 60mg if it is OK to split my Pred dose at all into morning and mid-late afternoon amounts. Unfortunately I was still getting some GCA symptoms - not severe but I feel not adequately resolved after almost a month on 40mg - so with GPs support upping dose to 60mg for now until after i see an opthalmologist at least.

(I realise tho as others have mentioned elsewhere I may never be totally 'symptom free').

I coped on 40mg but felt very 'wired' so thought splitting 60mg into say 50mg and later 10mg or 45mg and 15mg might help - but worry it will not have an effective anti- inflammatory result. My GP said he thought it would be fine but I looked through some older posts and I see DorsetLady you mentioned somewhere it wasn't OK to split doses for GCA ??

Thanks

Rimmy

[Jackoh]

I am not an expert on this but have developed GCA after having PMR for a year. From all the reading I've done on this site since Nov 2014 I conclude it is not recommended to split your dose with GCA. I have alluded to this with my own GP and she never comments on anything to do with the GCA. To be fair I believe she has no real knowledge about this condition, unfortunately. I personally have never split the dose since having been diagnosed with GCA as I have not wanted to risk a flare.

Jackie x

[Rimmy in reply to Jackoh]

Thanks Jackie !!

Rimmy

x

[DorsetLady PMRGCAuk volunteer]

Hi Rimmy,

Sorry to hear you're having problems. No it's not recommended that you split dose with GCA, it's different from PMR in that aspect and seems to require the full dose in one go, not sure why, but maybe just the higher risk involved. Particularly in first 6 months when it may not be fully controlled.

Not sure how long you've been dxd, have you been referred to a Rheumy - GCA patients should be? Looking at previous post you seem to have been on a bit of a rollercoaster dose wise, is that GPs advice?

[Rimmy in reply to DorsetLady]

Hi DL

Thanks for your supportive response DL I appreciate it. Yes you could say 'rollercoaster ride'.

Because I was originally diagnosed 'only' with 'PMR' in January and my GP was relatively inexperienced with this - he started me on 3 days of 50 mg tapering then to 3 days of 40 mg et.c down to 25 in about a month ! Although I found out this was rather unusual later on actually for a couple of months it all seemed to be working quite well in the PMR dept at least - until I got to about 18mg.

But then to confuse matters much of that time I also had fairly bad 'sinus' pain which I ascribed to allergy and told my doctor I was sure it WAS that. But I then had some other 'minor' symptoms which suggested (according to the BSR Clinical Guidelines) that I could have 'uncomplicated GCA' ! - ie without obvious 'vision issues' or major other symptoms like jaw claudication. But I became more suspicious of some niggly temple and head pains and asked the GP myself to up my dose for GCA to the advised 40mg. I sat on that for about a month - the face/sinus pain subsided but then became more worried about some tiny blue 'spots' - very ephemeral that I was getting occasionally in both eyes - which I thought were related to 'floaters'.

Although we have a modern regional hospital where I live in rural West OZ many specialists here are just of the visiting variety and I have an appointment with an ophthalmologist soon - but have not as yet scheduled a Rheumy. But to be honest after everything I have read here I'm not sure how a Rheumy - even a 'local' accessible one could have managed this very differently - so these decisions have had to be been mine really with my GP's agreement as I didn't want to wait too much longer to see someone before taking preventative action and risk eye issues.

Of course all this also meant I was on Pred initially too long to have a biopsy - and they haven't people here trained in ultrasound techniques for GCA either. Anyway I learned it was best to have a large dose of Pred on me for any emergencies and consider that is the best thing I can do under these circumstances.

The higher dose of 60 mg is certainly full-on - I feel pretty 'zoomy' but can cope OK if I have lots to do but I have to STOP myself from doing the 'duracell bunny' thing.

I know my circumstances aren't ideal with all this 'tapering up' - but recalling my mother's unexplained loss of eyesight - and in hindsight I think what was undiagnosed GCA (in NZ in the 1970's) - I'd much rather take the Pred and manage side-effects best I can. I have read everything I possibly can on this and other forums as well as multiple medical journal articles on PMR/GCA, Kate Gilbert's book and all yours and PMRPro's excellent advice so I feel reasonably confident I have made the best possible decisions I could have so far with many long discussions and agreement with my GP. At least here I can get a good 45 minute appointment if I need one. I realise though that in the longer term I will likely have to try to secure a 'good' Rheumy in Perth for ongoing monitoring.

But for now I will not split the dose as you suggest.

Thanks again DL !! (those are also my first name initials so sound very familiar to me)

Best

Rimmy

[DorsetLady PMRGCAuk volunteer in reply to Rimmy]

Hi again,

Yes at 60mg you will feel strange - I was awake half the night, felt I could run a marathon or two (not something I'd ever consider!) and could talk for England! My poor hubby used to say "for heaven sake woman, shut up!" - not something he'd normally say, or get away with!

Guess in your situation, you are probably the best person to monitor yourself, with assistance from the BSR guidelines, regular blood tests and an amenable GP who is probably learning along with you.

Having said that GCA patients are usually referred to Rheumy, from my experience I have to say I managed very well without! I was originally diagnosed by ophthalmologist, and with his help and said guidelines, my GP and devised a plan.

Because I thought I should see a Rheumy I asked and eventually saw one 6 months later - he was uninterested (polite way of saying totally useless) - looked at plan GP/I had devised and said carry on! Whether he was annoyed because someone had diagnosed me I don't know, some consultants are a bit touchy about that. But as I rocked up at A&E at a weekend having lost sight in one eye, and ophthalmologist was on duty, he did the diagnosis and started the treatment!

Good luck, and take care.

[Rimmy]

Thanks DL !!