Pride before a fall

Hi

Been treated for GCA since November 2016. Slowly reduced by 2.5 mg at a time and got down to 25. Recently had a holiday where I felt the most like me I have done since the begin going if this journey and decided to reduce again to 22.5. I felt great. That was nine days ago. Two days ago the pain started. Temporal and eye pain. I am seeing my rheumatologist on Tuesday next week and took a blood test yesterday so I will have my results for the appointment. I have increased to 27.5 and the pain has eased somewhat but not gone.. will I have to go higher still?

Best wishes to all xx

10 Replies

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  • Sorry you have had this flair. Hope it recedes quickly.

  • Hi

    Both my gp and consultant have said with the temporal pain to increase steroids until you find the comfortable dose. Although they are not concerned if I am stiff or moderately sore with the PMR they do not want the gca symptoms.

    Usually with a flare you can go back to your higher dose for just a week then drop back to the dose you were previously comfortable at.

    Sometimes though we have to adjust this plan for our individual needs.

    Best wishes

  • Thank you for your reply,

    I really thought had found a newhappy place on 22.5.

    Moving in the right direction and beating this thing. I still am. Not st my pace tho which would be zero in a fortnight.......

    As we learn from this group, the illness is the driver and we are reluctant passengers. Some would say hostages. It is a blip that is all. I am not going to let it derail me into dependency. Have a great day everyone xx

  • Sorry I meant despondency😊

  • No, don't be despondent, you are doing well and to learn at an early stage that PMR/GCA cannot be driven is all to the good. Keep chugging along and have a good day today.

  • You might find a few days of 30mg would be enough - it really depends on the doctor, some will go right back to the beginning. But it makes sense to get a grip as quickly as possible.

    Hope it settles down quickly.

  • It is not uncommon to have a couple of flares in the first 18 months. It is in the full BSR Guidelines on the Diagnosis and Treatment of GCA (new ones coming out shortly).

    I started on 60mg in Feb and got down to 20mg by Nov. Then it came back, so 60mg for one week and then 40mg for another week and then slow reductions by 5mg down to 20mg.. once again a wall........so this time 40mg, but this time down by 5mg every month....... till I got back to 20mg.

    By then I had met Ragnar, and I went down by 1mg per week............till I got to 10mg and then used the 'Tortoise and Hare' and the ' Dead Slow Nearly Stop' had been devised, based on Ragnars method. Both availablel free of charge by sending an email to pmrgcafightersne@gmail.com - subject heading Reduction Plans

    5 years later - zero and remission.............

    PMRpro, Polkadot and Celtic (Celtic had PMR &GCA and me GCA, we two started on our journey at the same time. We both went into remission at the same time).

    4 old hands and much progress made since those hairy days 10 years ago.

  • Thank you for your reply.

    I went up 2.5 each day to 30 until I got relief this week. Saw the GP today. She said not to be disappointed with myself and that reductions will have to be slower.

    There seems to be something with this condition or the people who get it that we tend to think we are superhuman and can push beyond our capabilities.

    This reminder of what the pain was like is enough for me to slow myself down and give myself time for the pred to do its thing until the illness goes into remission.

    Thank you to everyone who contributes to this group as we all learn from every experience.

    My spelling appears very different when I am typing on my mobile. I call it FFS. Fat finger syndrome.

    When I read it back I realise what I have Miss typed or missed out so apologies xx

  • Elaine

    Sounds like you have a good GP, they are a bonus.

    I meant to ask, did the GCA come along on its own or did you have PMR first?

    GCA only are pretty rare birds...........like me :)

    Stay there for a while, then try no more than 2.5mg - you might feel odd but if it does not settle down within 5 days of taking the drop - go back. It is difficult to tell from steroid withdrawal symptoms and too soon. You will learn.

    What I have learned over the years, is 'hit it hard and hit it fast' if it is a 'flare' people have and wondered how much to up it. If below 10mg, go back there for a bout 5 days, then drop 1mg every week and see what happens till you get back to where you were at. If you go past it and feel uncomfortable go back to previous dose, you are always looking for the dose you feel comfortable at.

    You can read people's stories on pmr-gca-northeast.org.uk

  • Yes the GCA appeared on its own very suddenly. When I dropped to 22.5 from 25 I felt great for nine days and so excited that I had seemed to get away with the drop. I was on holiday, lots of vitamin d, and then bam once I got home. The head started again.

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