Flare up GCA

Have had GCA for two years started on 60 mg had a couple of flare ups and given 25mg methotrexate a week to help finally got down to 11 mg. Now have had another flare up and put back to 30 mg is there no end to this illness? Had just started feeling positive and controlling the illness and doing most things I used to do notwithstanding the amazing tiredness that goes with it does anyone get over this?

15 Replies

  • You can get over it and back to pretty much normal - I know a couple of women in their 50s who are back to work after a couple of quite rough years. You cannot control the illness though - it will do as it likes so you must never feel "I've beaten this, I can do as I like".

    I'm sure the people on here who have got to the zero club with GCA will come and tell you their stories - but they tend not to hang around to tell about their success.

  • Thank you for your reply. this time the headache has been on the opposite side of my head during today it has gone away but now it has started creeping back even though I have taken the 30mg today is this normal ? so frightened of losing my eyesight!

  • Hello Vpankhurst, and I echo George in saying that yes you can and will beat this disease. I know it's difficult but do try not to focus on fear of losing your eyesight as the worry will cause you further stress and won't help in your recovery. The steroids are not curing the disease but are simply controlling the inflammation that causes the pain and protecting your eyesight until GCA decides to go into remission of its own volition.

    Most flares are the result of reducing the steroids too quickly and, like George, I found that reducing very very slowly proved successful for me in beating PMR and GCA into submission, although it did take some 5 1/2 years to reach zero Pred. If we need to learn anything with this frustrating illness, it is patience......in bucket loads!

    Finally, don't fight the fatigue but rest as much as you can to give yourself and the steroids the best chance to beat this illness.

  • Thankyou for your reply I think I need to rest more as you say trouble is as soon as I feel better I think I can do all I used to and not being able to do so is so frustrating patience is not one of my better qualitys. Also I think family and friends think I am making it up and when I go off to have a rest they think here she goes again.

  • Yes you can beat it. I was diagnosed with GCA 3 years ago and like you started on 60 mgs of prednisolone a day. I reduced to 3mgs in 18 months and had a flare up. I was put up to 15mgs and reduced more slowly, coming off all medication at the end of February. Throughout I suffered with awful fatigue but it does gradually go.

    Good luck


  • Hi vpankhurst I too agree with george and celtic,I was diagnosed with GCA Feb 2012, and that same year my Rheumy tried to get me down to almost nothing needless to say what happen next huge flair which lasted months,then lots of other illness,s arrived but here we are now following the advice from this forum of which without this would have commit harry carry a long time ago,now down to 8mgs and reducing very very slowly and still get fatigue but nothing I can not cope with still get few aches and tiny amount of pain in various parts of the body but once again nothing to worry about for me.

    Last week loaned my new GP Kate book to read and he was over the moon with it he said he did learn from it.Do not give up you will beat this illness and take as much advice as you need from this wonderful forum, All I can say is a BIG thank you wish I could meet all the people that has helped me on here.Anne

  • Hello Vpankhurst. It can be very depressing but things do improve. I have had PMR/GCA for 2yr 7mth now & am finally down to 4mg preds a day. Gave up Methotrexate in Feb after having shingles, so far so good without it. I did have a flare last Aug when down to 5mg so am pleased I've passed that mark at the moment. Best wishes.

  • I am in the middle of reducing Pred from 12.5 mg to 11.5mg by the slow method recommended on this site. Am half-way and so far, so good. My rheumy has put me on Leflunamide 2 x 10mg daily as an alternative to methotrexate, to help with the reduction. I haven't had any side-effects so far. Do you discuss your worries wih your consultant? I always have a printed list of questions and I give her a copy, but keep one for myself, so we can go through one at a time.

    Who do you Winchester Hospital, for instancee has a help line to call.contact when you have a flare? Were you told to put the dose back to 30mg in one go?

    I had a flare which involved the horrid headache and sickness. when I got down to 10mg and phoned the dr's surgery to be told to put the dose back to 12.5mg. I

  • there is a help line to the hospital but didn't want to undermine the Doctor perhaps I should have telephoned them. Sometimes I do think I am being a nuisance and try to go to the doctor as little as possible which is hardly ever my consultant told me to drop 1 mg a month which I have done and he did explain about the side effects I was getting at the start which put my mind at rest but the doctor says nothing.

  • Sorry - to continue: I had got down to 10mg and was told to take a 2.5mg tblet and keep at 12.5mg for a couple of weeks. I felt better, had a good night's sleep and was oK the next day. So is it necessary to go right back to 30mg, I wonder.

  • I saw my GP and he put it up to 30 mg straight away He said to protect my sight. I will be seeing him again next Tuesday. My next appointment with my consultant is the 9th of June I had been doing so well just about to go down to 10mg and recently went abroad on holiday and I was fine I have had a kidney infection in the last two weeks with blood in the urine went on a course of antibiotics the doctor tested it again said it was a lot better don't know if that had anything to do with the flare.

  • Yes, it's very possible for the urine infection to have caused the flare - any trauma, whether physical or emotional can interfere with the reduction process. With a bit of luck, once you have completely recovered from the urine infection, you will be able to reduce back down a little faster this time around, at least to as far as 12.5, or or just above the dose at which you last felt comfortable and remain there for a little longer than previously.

  • Thankyou so good to be able to ask someone who knows what I am talking about very tired and wobbly but will keep resting and go with the flow onwards and upwards

  • feeling a lot better reduced to 25 mg by doctor was a flare of GCA she said blood test showed higher levels. see doc again on Monday and she said could go down 5mg a week to start with. still have a problem with blood in urine and they continue to test it regularly. looking forward to discussing all of this with my consultant on the 9th June. This site is a godsend to know other sufferers feeling the same way and how they are dealing with it.

    Today a good day!

  • Hi im on 25mg at moment til 4th June next consultant app. Ive gca pmr and a host of other things click my name if you want .Ive been on AZA got rash with that so stopped am on weekly injection of methotrexate 25mg as steroid sparer. My Consultant wants to get my pred dose down safely .We reduced to fast last time had 2 flares with sight loss transiently . Back up 30mg now on 25mgs til 4th july when I start my second lot of 6 infusions of cyclophosphamide .Oh ive got to start warfarin also after holiday . Border line Hughes ,sticky blood. Good luck to all.

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