I was fit until GCA diagnosed 7/9/19. Started on 60mgm Pred, then reducing. Had my first injection of Tocilizumab/Actemra on 23/12/20 and injected once a fortnight VG, then zero Prednisolone since 21/8/23.stopped Actemra March 2024, all good until flare confirmed 9/7/24. CRP11 & ESR36. Back on 20mgm Prednisone. October 24 prednisolone 10 mgm daily & reducing to 7 (16th Dec) but symptoms returned so up to 15 then 20mgm (hospital advice). Blood test 3/1/25 ok, consultant (6/1/25) says reduce. All January had a nasty bug/cold/cough. Now on 10mgm & sore head, intermittent headache, fatigue. Don’t feel I have enough Pred in the bucket to keep level but don’t want to get in “yo-yo up down Pred” but not well!
Any thoughts? Advice before I email hospital and I bet they say go up.
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Bachblues
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The January bug - could it have been Covid? How are you tapering the dose - are you going straight from 10 to 7? Blood tests aren't 100% reliable, they can lag a long way behind and it can cause problems. But above all - tapering while ill is never a good idea.
Is there no chance of getting back on Actemra? How did you get such a long period on it before - even the people who were on it pre-Covid only got a couple of years with their extension.
Don’t think it was Covid, but didn’t test. Re - the Actemra, there was the extension, then an administrative hiccup & then my consultant wrote asking for more (various reasons) but eventually it stopped. Reducing slowly as per consultant direction… failed to mention I have a lot of shoulder ache and taking roughly 4 paracetamol per day this last week. Basically struggling! But wonder if it’s just reducing Pred or not enough in the tank!!!
Or is it something else - like myofascial pain syndrome - that is causing the shoulder ache? If the pain is PMR as a part of your GCA, which it could well be, then it isn't paracetamol you need but enough pred. New research has broadened the basis for rethinking the safety profile of paracetamol used longterm - it isn't good.
As DL says - we would say that being on 20mg in December and trying for 7mg now is a recipe for disaster!!!
Thank you both for these swift replies. This is the sequence of Pred: Oct,/ 10 mgm, Nov /8mgm, Dec /7 mgm, 20th Dec/12 mgm, 25th Dec /15mgm, 15thJan/15mgm, 16th Jan/12.5mgm 30th Jan/10mgm & due to drop to 9mgm on 13th Feb.
Being in a similar position ... unless you are symptom-free it is not a good idea to try multiple 2-week reductions. At some point there needs to be a pause - say a month on a level to catch up and make sure you are not storing up problems. Also, viruses can make the immune system frisky, so never a good idea to reduce during or after a virus.
These are the questions I ask when considering when to taper. Are the symptoms intrusive and getting worse over the days? (Increase) Are they grumbling away, not getting worse but consistent and noticeable? (Stick) Are they low level and over time disappear into the background more often. (Stick or taper).
In my experience, you can really trust what the advice above says, and you'll find you need to worry less about the yoyo... if you reduce more gradually and at max every month it is much less likely to happen, and that will be better for your adrenals too. It's like the tortoise and the hare. Good luck.
I was yo-yoing. My GP wanted me to consult a Rheumy with a view to Methotrexate. I asked to be referred to Joel David as I had heard good things about him. I saw him privately in Oxford. He said that MTX was not required and that I had been tapering "much too fast".
His Prednisolone reduction schedule is like this, starting on 8mg for example. Month 1: 8mg every day. Month 2, every 3 days: 8,8,7 all month. Month 3: 8,7,8,7 ... Month 4: every 3 days: 8,7,7 Month 5: 7mg every day.
This could be expressed as Mth 1: O, O, O .. Mth2: O, O, N ... Mth 3: O, N , O, N .. Mth 4: O, N , N .. Mth 5: N, N, N .. Where O = old dose and N= new dose.
I started this regime in August 2023 when I was on 8mg. It is very slow but has worked well for me. I arrived at 5mg after 12 months, with no flares. I decided to stick on that dose for a while. I have recently commenced a new taper to 4.5mg
I’ve been to yoing for months on prednisone as MMF failed I’m awaiting RTM infusion so in the meantime I’m 40mg then tapering to 10 then 5 then in another 6 weeks back up to 40/30 etc it’s a pain. My face is so round and I look pregnant, it’s awful.
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