GCA FLARE. ADVICE PLEASE: Hello I have had a GCA... - PMRGCAuk

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GCA FLARE. ADVICE PLEASE

GrannyReid
GrannyReid
19 Replies

Hello

I have had a GCA diagnosis for a year now and have been successful in tapering down to 5mg of Pred. No problems whatsoever when taking 6 mg for 4 weeks. Very excited as gargantuan appetite disappeared and I’ve managed to lose 5lbs in the last fortnight. Then last week the headaches came back. Went to GP - she said ok to self medicate which I’m happy about. Went up to 6 again, next day 7 and today I’ve had to go up to 15 to get rid of the headache. Can anyone advise me please where I go from here? How long do I stay on 15 and then how quickly can I taper down to 5 again? I would really welcome your opinions - have always been so helpful when I have asked before. Thank you.

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SnazzyD

How frustrating! How long were you on 5mg before the headaches started? We’re they the same as pre diagnosis? I’m in the same position and have had stonking headaches after a couple of days of a dose under 6mg. I’ve been toggling between 4.5mg and 5mg and sure enough when I was on 2 days of 4.5mg wham, it was back. For me though the headaches feel like skull ache, cheekbones and nothing like the pre diagnosis pain. Eventually it goes but it takes a week or two. From 5 I’m intending to go really slow especially while I await the results of my Synacthen test today.

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GrannyReid
GrannyReid
in reply to SnazzyD

Hi SnazzyD. Thanks for your reply. Was a week on 5mg before headaches kicked in. Blood test showed inflammation markers were up. Exactly the same type of pain as before. Am scared to persevere on low dose in case it risks my sight. Eyes are very bleary too. Going to optician tomorrow. Good luck with your tapering and thank you for taking the time to answer. It is always a help to share in this forum.

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SnazzyD
SnazzyD
in reply to GrannyReid

Have you tried 0.5mg steps?

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GrannyReid
GrannyReid
in reply to SnazzyD

No, but a good idea. Thank you.

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karools16
karools16
in reply to SnazzyD

I hope you get good results.

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Telian

7 to 15 is a big jump usual rule is to go back the previous dose you were well on. I assume the headache has gone? If so then go down by 2.5 gradually, for 1/2 weeks, until you reach 10mg then reduce by 1mg x 2 weeks until you reach 7, if still okay another 1mg reduction but if any reaction go back to 7 for another week or until symptoms subside - then .5mg reductions and watch symptoms, it might take longer as you get lower so don't expect to rush down to 5mg - dsns...

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SheffieldJane

This must be so disappointing for you. I must say though, to get down, in 1 year, from GCA doses to 6 mgs is really fast. I would be inclined to rest a while at 15 mgs until everything has settled and if your bloods are reliable, I would want to see the inflammation levels reduce. I would then be inclined to do a slower taper of 1 mg, using dsns method and maybe 0.5 after 10 mgs. As you say, you simply can’t mess about with active GCA. The benefits will be still there for you when you get down again, more permanently I hope. I am feeling so fat today so I can empathise with the value of the weight loss and the voracious appetite calming down. I can’t wait.

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GrannyReid

Thank you. You are wonderful. I felt so much better just reading your reply. Words of wisdom noted.

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Marijo1951

I'm amazed that you have reduced so quickly. I agree with Sheffield Jane that 6 mg seems very low. I was diagnosed with GCA and PMR on 31st July 2017 (so almost a year ago). I started at 60 mg of pred per day and I'm now at 17.5 mg. In 4 weeks I reduce to 15 mg. I'm also taking Methotrexate as I had severe flares twice when reducing to 25 mg. Like you I'm glad that the ravenous hunger has diminished. I also find that the insomnia is less bad i.e. a sleepless night twice a week instead of every night.

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GrannyReid

I was actually diagnosed on the very same date as you! My rheumatologist wanted me to reduce even faster but I have had two mini flares on the way. Everyone seems to agree that it was too fast and I will listen to the advice given. Thank you so much for taking the time to reply. Good luck with

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Sho-Sho

I think as other of us GCA sufferers have said you have done a very fast reduction. I was diagnosed two years ago, started on 60mg, after one year was down to 16mg and now on 8mg where I have come to a grinding halt - definitely cannot go any lower at the moment. I think the research shows that you would normally need pred for a minimum of two years and it is not unusual for longer. My rheumatologist hopes that I might only take another year before the inflammation burns itself out, the way things are going.

Have you been under a Rheumatologist rather than just your doctor - it is a very difficult condition to manage and not many doctors have the experience to deal with it.

I cannot help with your flare as, so far fingers crossed, I have not had one, but I am definitely not complacent about it!

Good luck.

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GrannyReid
GrannyReid
in reply to Sho-Sho

Hi Sho-Sho

Yes, have been under a rheumatologist but he doesn’t seem very interested. After temporal biopsy and initial consultation when he gave a sheet with guidance on tapering he hasn’t wanted to see me again. This is why this site is so useful. Feel so much better today having read all the replies. Thank you.

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Hidden
Hidden

So sorry to hear this GrannyReid.... I hope you get it back under control soon!!!!!

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GrannyReid
GrannyReid
in reply to Hidden

Thank you.

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PMRpro
PMRproModerator

Are you not under the care of a rheumatologist? You should be for GCA, GPs are usually out of their depth.

Relapses or real flares of disease activity (as opposed to just having overshot the dose you need) are very common in the first 18 months after a GCA diagnosis. If you need 15mg to manage the symptoms that's what you need - did you try 10mg though on the way up? The best thing probably would be to stick at the 15mg for a week, get the blood tests done again to be sure the inflammation is really under control again and then perhaps try 10mg if they are low. But beware of being too keen to reduce and letting in a flare.

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GrannyReid
GrannyReid
in reply to PMRpro

You are a fount of knowledge and wisdom. Thank you for your reply; I’ll follow your advice. Thank you for giving so much of your time to this forum. A problem shared is definitely a problem halved now. I feel so much better, relieved and not alone.

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Jamie345

I think you did incredibly well to taper down in your first year, I got down to 12/half when I had a nasty flare up that seemed to last forever I put myself up to 15m still feel ill but loathe to go up to 17/half or should I? I really don't know, I had my appointment with my rheumy on 2 nd July which I've been waiting eagerly to seek advice but come the morning I could not even get myself up showered /dressed I called the hospital and they have sent me anouther appointment but it's 1st October, can anyone out there advise me what to do feel low?

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PMRpro
PMRproModerator
in reply to Jamie345

If you can't function - you almost certainly need more pred. But really, if you have an appointment and the thought of showering and getting dressed is too much I can assure you that it is very unlikely you will be anything like as smelly as some patients who will turn up anyway! If it were my choice - I'd say sod the shower, and carry me to the taxi...

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GrannyReid

Thank you so much. Your advice makes good sense and I’ll follow it.

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