I have what I think is a GCA flare but it is different from what I have experienced previously. I spoke to my GP on the phone - no appointments left today after 8.30 - he left a blood test form for me, results of which I hope we'll be able discuss tomorrow. My last recent blood test gave ESR at 49 but that was thought by the GP I saw then to have been raised by infection from kidney stones. What I have now is occipital pain mostly to the left of my head, also in my left ear and slight tingling going up from this. My eyes have been intermittently blurry for a while but I've attributed this to trying to adjust to new glasses. My question is if I don't get a satisfactory answer tomorrow should I act autonomously and try a substantial increase on my current 6.5mg? (I have a good stockpile of pred). If so, by how much should I go up? It's so frustrating that I always flare when I get to this level of my taper.
Hope for all your experienced and expert advice.
Written by
maria40
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"It's so frustrating that I always flare when I get to this level of my taper."
That is your body telling you that you have reached your destination: the lowest dose that manages your symptoms as well as the starting dose did. You are never reducing relentlessly to zero unless you are under instructions to stop the pred for some reason but after a few months at GCA doses you can't do that fast anyway. So you should be stopping at about 7 or 7.5mg when you get there.
All that you describe could be a GCA flare - and if you tell your GP practice it is an emergency they must get you seen even if all normal appointments are gone at 8.30am. If so you do need more pred but none of us can really advise how much - you need to speak to a doctor. If it gets any worse, call OOH or, if you have any worse visual symptoms, dial 999 and discuss it with them if you have no-one who could take you to A&E. What dose have you been told to go up to when it has happened before? The usual advice given for a flare is to add 5mg to the dose where the flare occurred - so for you probably 12mg. Then you reassess once the symptoms have improved.
I think last time I had to go up to 30mg. If the surgery is as busy as today it will be impossible to get through on the phone. I think my best bet may be to go in person at 11 when test results should be there and if they're not just sit and wait - unless I've got worse before that in which case I'll go up to 12mg in the morning.
I haven't been on a relentless drive to the bottom; I've used DSNS and I had always planned to stop at 5mg if I got there without a flare. Thanks so much for your advice I don't know what we would do without you.
I think you need to increase- looking at previous posts this seems to have been rumbling on for a few months.
Think you probably need to go up to at least 15mg for about a week - then if things settle back down to 7.5mg. Stay there for a few weeks before you think about reducing again.
Obviously if 15mg doesn’t clear things you need to definitely get medical advice - are you seeing a rheumatologist? Maybe your GP is not sufficiently experienced in GCA matters.
Thanks so much DL. Perhaps I should have seen some warning signs.
I am due to see a rheumatologist next week specifically about the results of my dexa scan - I don't know who that will be , hopefully not the walking disaster I was with for PMR/GCA . I'm not the only one to have given up on him. I certainly wouldn't trust his advice on GCA.
The GP I spoke to today is senior in the practice and he did seem to understand but I'll see what happens tomorrow. Any worsening and I won't even wait for blood test result but will increase dose as suggested.
Ask to see them specifically tomorrow and do go in and wait.
Tell them your symptoms are getting worse and you are concerned about your sight and GCA , that you need to know if you need to be on a substantially higher dose that the GP needs to approve for you , and if they cannot fit you in you will need to go to the Hospital to have this sorted out and tell them that you hadn't been able to get in to your surgery.
They may just move a bit quicker then.
If they don't see you , contact the Rheumatologist your saw before or the one you will see next week and ask for advice about your symptoms and increasing the dose by phone . Explain you are happy to wait for a call back from the Secretary with a message or with a Rheumatologist themselves.
If you don't get a proper answer , do go to A and E , it isn't right or appropriate for you to be stuck trying to make decisions on changing your dose like this on your own , especially if it could be GCA Flare and have serious side effects if you don't get it right.
Actually the surgery have been very good: the GP I spoke to yesterday rang me this morning . long before I had planned to set out, to give me my results - not good ESR 68, CPR 27 - no wonder I feel rough. Anyway he was very good about the dose; I told him what I had been recommended by a mythical retired medic friend - i.e. all of you - and he agreed that I could start on 15mg for a couple of weeks and see him immediately after Christmas but if it got no better to increase the dose to 30mg or 40mg if it got worse, and go to A&E straight away.
He gave me quite a good distance check, involving queries about eyes, pulling hair - ouch! - chewing, and bending my head in various directions, also feeling temporal arteries. I was quite impressed by his flexibility in accepting DL's recommendation of 15mg and his willingness to listen to what I was saying. Brought home the real meaning of a consultation.
He also gave me the results of my ultra sound scan for kidney stones, no big ones there but potential for smaller ones to appear . So I 'fessed up about having dropped the AdCal and he said he really would advise me to resume now I was back on a higher dose of pred.
I was talking to him probably longer than I would have done had I gone to the surgery. Afterwards I spoke to a friend whose late husband was treated by the same GP and she said he was one of the best she'd ever encountered. I bet he retires soon, that's what always happens to me when I find a good one but I'll certainly hang on to him until then.
Thanks to everyone who replied for their help and advice.
I managed to email my Rheumatologist to request sanctioning increasing the dose and got a reply very quickly but perhaps I was lucky - her secretary forwarded the email to her. I had already increased my dose which my brother was cross with me for but she increased it even more! Best of luck.
He is a GCA sufferer and not a doctor - but a follower to the letter of what Doctor says! He was worried that I was taking too much prednisolone which was kind of him - although it would be good if he trusted my instincts!
Yes - as I said - your pain! And as a past GCA patient I would say although you are both on Pred, the illnesses are different- and it’s seems to be more difficult to taper with PMR - more prone to flares.
Yes you are quite right - it was my eyesight I was concerned about. However I understand his concerns about pred which he is no longer on - the M stuff (can't think how to spell it just now) has taken over for him 3 + years down the line. I am still in my first year of PMR and GCA.
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