Hi everyone. I'm GCA since March, positive biopsy at time of diagnosis and CRP was 141. I was started on 40 mg Pred and within days symptoms settled and CRP and ESR were within normal limits. My rheumy has had me on a fairly fast reduction. I reduced fairly quickly to 10 mg and since then I have been reducing 1mg / month. I am currently down to 6mg. Until the last 2/3 weeks I have been feeling fine. Now I am just wondering whether I have the beginnings of a flare. My CRP has crept up from less than 4 to 19 in the last 4 weeks and I have been having very slight headachey feelings but nothing even vaguely like the nightmare headaches pre diagnosis. I'm wondering what to do? Should I increase to say 15 for a week and try to get it back under control? Or higher? And then taper quickly to say 10 and then go slow?
It's funny ( well obviously not really!) but I have been feeling really low too for the few weeks. Depression definitely figures loud in this illness. Anyway, I would be really grateful for some suggestions from our resident experts.
Judy
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Judy211
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If you’ve felt a bit iffy for the last few weeks, then would guess your flare has been building.
Your suggestion of going up to 15mg for a week or so and then returning to 10mg sounds okay. But once you get back to 10mg stay at that for another 4 weeks before you try tapering again.
From then either use a slow taper if you want to continue reducing at 1mg a month - as follows - or try 0.5mg a month, obviously what you’ve done before was too quick.
1st week - Sun & Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose
2nd week - Sun, Tues & Thurs new dose -Mon, Wed, Fri, Sat old dose
3rd week - Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose
4th week - Sun, Tues, Wed, Thurs & Sat new dose -Mon, Fri old dose
5th week - every day new dose
Note: I found usually once I’d completed Week 5, I was able to go straight into a new reduction. Occasionally I did stay on extra week - depended on circumstances.
Thank you for replying so promptly. I only got my latest blood test results this afternoon and I just felt so disappointed... in myself mostly! Things had all been going a bit too well. I felt fine apart from a few Pred side effects, but I suppose I got lulled into a false sense of security. I will speak to my GP tomorrow and suggest 15mg for a couple of weeks and then see how I go. Hopefully, it'll contain it. Onwards and upwards!
You don’t need to feel disappointed in yourself - it’s not you it’s the illness. However long you’ve got it, and no-one can tell you that you need to take the Pred, you’ve done very well so far, but you’ve obviously got to the level you actually need at the moment.
So don’t try and rush things, it’s much more difficult to reduce once you get to single figures. On higher doses when you are well above the actual amount you need every day it’s quite easy to taper, but as you get lower there’s not so much margin to play with. Plus your own adrenal glands need to start working again, and that can make it more difficult.
Have a look at a post I put up last week re tapering and adrenal glands
I know how you feel. GCA in April 2014 with a CRP of 189, text book progress in under two years reducing to 3mgms then flared. Since then I have been up and down. Had two cataracts removed, bladder problems and lost a tooth this year. I am also prone to any cough ,cold and random virus that's going. My CRP went up to 17 from 3 recently which was attributed to the virus, its now 10 and other than the crippling depression I am absolutely fine and seem to be happy tapering to 4mgms but I am neurotic about it being so high.
Like you I am disappointed with myself and also ashamed that there are so many others suffering horrible pain and all I have to worry about is CRP
The logical part of me knows that it will get better and it will just take its time also I am very fortunate compared to other.
Hi Edith. Well I think you should give yourself a pat on the back...happy tapering to 4mgs without symptoms is pretty good! The crippling depression is another whole other matter. I am such an upbeat optimist by nature but since the advent of GCA I feel like this tiny row boat cast out in the ocean. When the water is calm I feel ok and sometimes even really upbeat and excited but when even the smallest upset in my day happens ( and they do, to all of us, on a daily basis) It capsizes me and I really have to make a big big effort to cope with it. And I do cope with it but I often feel I am close to going under. Anyway, I'm a great believer in positive thinking....I'm sending you some positive thoughts!
I too am very positive and my mantra is that the antidote to self pity is gratitude. Maybe those of us who are normally very resilient get hit harder. It doesn't help that my husband is a GP and I know he gets fed up with my trivia, thank goodness I have friends like you on this site.
I am supposed to go to Majorca with my son and his wife for the weekend but I feel like a wet lettuce leaf, I will try to shrug it off and not spoil it for them
Ymlean as we say in Wales, that's our version of forward .
I've just cancelled my weekend trip to Devon to see a lovely old friend of mine...couldn't face the drive on my own. You go to Majorca and have a reall fab time...do it for the both of us!
I got myself out of bed, did my legs, washed my hair and went two doors down to see my friend where we polished off a bottle of Proseco and reminisced about being young and very naughty. She has macular degenerationand has lost the sight in one eye. Lots of laughing and and now feel better. Thank you all x
I obviously need to visit you and you mate - I'll bring the prosecco!
I and my friend in Germany used to open a sekt in the late afternoon when our children had been playing together. We'd finished it by the time our husbands got home/came to pick me up. Apparently she has totally got out of the habit...
Reminds me of my youth. My friend's husband spent time in West Africa and made Nigerian Beaujolais out of bananas. We had similarly happy afternoons. Those were the days. Just as well we enjoyed ourselves when we could, life soon catches us and tries to spoil it if we let it
You have no grounds for blaming yourself - but that is an incredibly fast taper for even GCA which is probably easier to manage than PMR. The fact the CRP is going up (I think that is more than creeping!) is a sign you aren't on enough pred to manage the inflammation so you really do need to go higher for a while. How long will depend on the result - and that needs monitoring by the CRP.
But if it were me, I don't think I'd be in a hurry to reduce. It isn't a race - controlling the inflammation is far more important.
Thank you PMRpro. I do get that now and actually, tho' I hate to say it, things were going a bit too well...and I was almost waiting for the inevitable. My rheumy's plan was get to 5mg as fast as my symptoms would allow and then stick at 5 mg for 12 months before tapering slowly down. His plan, my body! It was obviously just a bit too fast. I'm learning...the hard way, like most of us. Anyway, I will raise the dose and feel my way gently forward.
Now if he'd been going hell for leather heading for TEN mg and stick there for a year I'd possibly have approved the attempt. But 5mg is a step (or 5) too far. And in PMR or GCA more haste tends to be a case of less speed and repent at leisure.
Yes, thanks. I’ve been doing a bit of research today too. I think things were levelling out ok at 8mg but that is probably my tipping point right now. But in any case, I’ve raised to 15mg today and Ill stick at that for a week or so to get things back under control, then drop to ten for a couple of weeks and thereafter take it very slow. I really don’t want to be yo-yoing if I can help it. Not easy, is it!
Your post 'spoke' to me! This does sound like it could be a flare that needs nipping in the bud.
I have PMR, not GCA, but you may be interested to see the graphs I've posted which show my flare. My GP and I ignored the rise in CRP and ESR (hindsight is a wonderful thing!) until I was incapacitated by bursitis in both hips and shoulders.
I went up from 4mg to 10mg at the beginning of July and am now just starting the taper to 7.5mg at 0.5mg per month from now on.
Hi Rugger. Thanks for that...interesting idea drawing it on a graph. I can now access all my bloods online so I may have a go at drawing a graph myself. Yes, it's definitely a flare. Both my CRP and ESR were very high at time of diagnosis and then they responded almost immediately to the Pred so, along with symptoms, I can definitely trace a clear pattern of what's been happening recently. Frustrating to flare but we've just got to get on with it! Best wishes to you too.
Flares are almost always due to having reduced marginally (or not so marginally) below the dose you need. Occasionally it is because the underlying autoimmune disorder has increased in activity.
Thanks for giving me the nudge I needed. Just back from the most fabulous weekend in Majorca on the boat, if I could find out how I would send you my photo resplendent in my bikini in the glorious sun.
I raised a glass 🥂or five to you and PMRpro and my fellow champagne lover Dorset Lady, I ate too much and laughed my self silly. I now feel and look much better and intend to keep that way. Compared to some of our friends on this site.I am incredibly lucky and very grateful, even this Welsh rain isn't going to get me down again
They certainly are. I used to be so snobbish and dismissive until I found this site.
I have just told PMRPro that I am now packing for the cruise on Saturday. More glasses will be raised to you and my virtual friends in Boston, New York, the Bahamas, Bahama and Florida.
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