Flare after short synacthen test

[Meezamom]

I've been on Pred since April 2022, starting at 15mg and have reduced to 3.5mg - it has taken work, but I've used Dorset Lady's super slow reduction protocol and it has got me to where I am now.

I had a short synacthen test 3rd July to see if I would be able to come off Prednisolone, but had to immediately reduce from 3.5mg to 3mg for a few days before and then come off it altogether for 2 days. I went straight back to the last place I felt good, 3.5mg and three weeks later it felt like all my symptoms had come back. I called the rheumatology advice line (which is actually really good normally) and they said it sounded like a flare, but I couldn't increase until I had seen/spoken to the rheumatologist and that would take a few weeks.

Emotional call to GP (because it blooming well hurt!) and I managed to get a nice receptionist and a helpful duty GP, who booked me an urgent blood test to check ESR/CRP and gave me a prescription for 10mg a day but 'reducing quickly'.

Blood test has come back as normal, it was only very slightly elevated on initial diagnosis too. The GP said reducing quickly, but didn't advise how and I was daft enough not to ask. I can't get a non-urgent call with my normal GP until late next week and I'm not sure what to do next with my dosage. If I ask the rheumy advice line, I feel sure they will say my bloods are normal, so just go straight back to 3mg (Rheumy thinks I'm too young for PMR at 59🙄and my records say 'presumed PMR')

I took 10mg for 7 days, pains eased on day 3 or so and much better by day 7, so I have reduced to 9mg. Pains are still there, in shoulders, hips and knees, but significantly less than week one. I have sort of planned to go down 1mg per week until I get back to 3 or 4mg, but I don't know if that's what the GP meant by quickly, should it be quicker or slower? I really don't want another flare!

I did have a little store of Pred from when I was on on higher doses and, like a good patient, I used them up before getting a repeat, so I am pretty much at the mercy of what the GP says as regards getting a repeat prescription in 2 weeks. I would be grateful for any advice please

Thank you 🙂

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare.

I’d say if you have enough of a stash, you can stay on the increased dose [10mg rather than 9mg] for another week. Then in line with protocol reduce to 4mg in one step.. which you can then treat as your ‘new dose’.

healthunlocked.com/pmrgcauk...

For info - you only need be have not taken Pred for 24 hours before a cortisol test, so not sure why you had to go through the procedure you describe.

You are certainly not too young at 59, not even 49!,… think you Rheumy need to get abreast of current information - and a reply ‘in a few weeks’ is not good enough.

[Meezamom in reply to DorsetLady]

Thank you so much, I had a feeling that just reducing 1mg per week might make things worse, but it took 10 months and 5 GPs before I finally got my diagnosis from a trainee GP, who also recommended this forum! I don't have a lot of faith so try not to give them the opportunity to give me the wrong answers!

I love this forum, it has helped me so much and thank you everyone for all that you do😊

[PMRpro Ambassador]

You have got a right load there haven't you!!! "Too young for PMR at 59" - all the guidelines say over 50 and the top PMR expert in the UK says she has several in their 40s.

You have done the first bit of the flare protocol which should sort the effect of that sudden withdrawal of pred. Normally we say add 5mg to the dose where you flared for up to 14 days and then you can drop back to the dose above where you flared. Have you enough pred to stay at 8mg for a bit longer?

But even if your synacthen test showed perfect adrenal function - that doesn't by any means say you can stop pred just like that. 3mg is loads to manage low PMR disease activity - even 1mg can be enough to keep you stable and symptom-free but zero allows the inflammation to build up until you end up back where you started and getting things under control then is almost always more difficult. That last 3mg may take a while to taper without a flare - and you are facing doctors who haven't a clue so will try to force you to go faster.

[Meezamom in reply to PMRpro]

He was convinced I am too young and sent me for MRI, CT, X-ray, weird blood tests, bone scans and more. He was convinced that I have some other inflammatory disease instead, all came back negative. Must have cost a fortune🙄

I received my synacthen results today and I got good results, so yes, now comes the hard work of batting off my doctors and reducing at my speed, where and if I can.

Thank you both, I now know what I am doing and have a plan going forward!!👏

[PMRpro Ambassador in reply to Meezamom]

Honestly - sometimes you couldn't make it up!! I was 51 when it started, nearly 57 by the time it was diagnosed, I got a few tests and the rheumy was insistent it was an inflammatory arthritis and wanted to use sulphasalazine. I couldn't as it needs consultant supervision and I was about to move to Italy - hadn't even got a GP!! 15 years later there is absolutely no sign of inflammatory arthritis except inflammation and arthritis in my low back and my rheumy is happy it is PMR and hasn't changed. At 3mg I wouldn't actually care what it is - as long as I have the medication that deals with the symptoms.