Having had PMR with 2 relapses, over a period of ten years and been off steroids for eight months or more, I have just been diagnosed with GCA after horrendous head and jaw pain, over previous two weeks.
Started 30 mg of pred on Tuesday and felt so much better by the time they kicked in, in the afternoon.
Day 4 and still have sore temples and head pain. Is this normal?
Thank you,
Catherine
Hi
30mg is a low dose for GCA at least 40mg is usual starting dose and sometimes more is required.
It took me a couple of weeks to get rid of all head pains -and I was on 80mg (albeit with sight loss) -but you may well need more.
Any reason why 30mg?
I don’t know why 30mg and not 40mg but I was prescribed 30mg on the basis that the GP suspected GCA , started them the next morning, then doctor phoned the following morning with blood test results indicating GCA, but didn’t say to raise doseage.
I have to pick up a glucose monitor on Monday afternoon so could ask then. I have more blood tests on Tuesday and another GP appointment.
Thanks for your reply xx
Okay… but you do need to query why only 30mg…all the paperwork does say 40mg as starting dose for uncomplicated GCA [and that doesn’t include jaw claudication].
And more for red flag symptoms which include jaw pain.
Was amending as you wrote…
Just found a new Uptodate part page which goes far enough to say "We never start at under 40mg" but they immediately add a steroid sparer. Which is fine if it is tocilizumab I suppose ...
Not much chance of that if in UK - which I’m guessing author is, although doesn’t say on profile.
Quite.
Hi - and while I'm sure you don't want to be here, welcome back.
That is a very low starting dose for GCA - normally 40mg is the bottom end of the starting dose range, and may be higher, especially if you have jaw pain, and obviously the higher the starting dose, the faster the inflammation is reduced but even so, it can take several days before all the soreness is gone.
likely because you are on too low a starting dose for GCA. Assuming you are in the UK this is the NICE guideline that the GP should now about or have looked up. You should be on a minimum of 40mg. You should also be referred on a fast track referral to a specialist within 3 working days.
I am so very grateful for all your replies which are so helpful. Ironically I run my local PMRGCA support group, but never thought I’d end up with this diagnosis.
I must admit I was really gutted and it’s taken time to process, knowing stories from my group. Thanks all
WOW,only 40 mg!I was started on 60 mg,but maybe that was because I had lost sight in one eye.Such a shock for you to get this now .All Ican say is good luck to you,but as others have said you really should be on a higher dose and press for a Rheumy appointment eh?xxx💐😜🎄
Sorry ,Pred brain,should have put “ only 30 mg”” !😱🎄😜
I agree with SnazzyD that you should be seen at the outset by a rheumatologist who, I believe it’s safe to say, is more qualified in the treatment and management of GCA . Once symptoms are under control with the correct dose of prednisolone, it may be ok to be returned to the care of your GP. My advice is to ask your GP to refer you to a rheumatologist now….and don’t be fobbed off. Good luck-I wish you well.
I’ll ask for a referral on Tuesday when I next have a GP appointment. A fellow GCA sufferer has also given me advice on other questions to ask. I do know that within 6 days of Pred my blood pressure has gone up significantly already which I assume must be linked to x
Mine went up significantly when on high doses,always had excellent BP.Now on a lower dose and BP is nearly back to normal.xx🎄🎁🤶😜
It will be on high doses of Pred but invariably drops back down as you lower the steroids.
Morning all: different doctor rang on Tuesday and said I should be on 60mg which is what you had all said. Then to lower to 40mg on Christmas Day.
Question: this seems a massive decrease, which it is so do you think I should taper down to 40mg and if so, can you tell me exactly what you’d advise, please?
I’m great at advising in tapering for PMR but GCA is all new to me.
Many thanks
I'd say that is probably OK but if you have enough pred you could do the 2 weeks (?) at 60, a week at 50 and then 40. But the purpose of the very high dose is to get the inflammation and any swelling down quickly and usually the 10 days at 60 would be plenty. How were the symptoms on 30mg? Had they resolved?
No they hadn’t Much improved though and wonderful compared to the excruciating pain day and night before I saw the doctor
Which suggests the 40mg dose after the burst of 60mg should be fine.
One of the rheumies here said many doctors thought that 15mg was probably enough even in GCA for many patients but given the potential outcome if compromised blood flow wasn't dealt with quickly they used very high doses at the outset.
Due to current time difference see PMRpro has replied… but just for inf, would agree with her advise… and view the increase to 60mg as usual,procedure for a flare. Just higher doses involved..
Good luck.
The British Heart Foundation has advice for lowering blood pressure bhf.org.uk/informationsuppo....
Keeping active-according to your age and ability- is also helpful:
bloodpressureuk.org/BloodPr...
Good luck with your GP appointment today. 🤞
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