Reducing pred

[Devoid]

Hi looking for advice. Trying to reduce pred down to 10 as advised for cat pet scan .reducing from 40 for suspected GCSEs , negative biopsy but blood test still suggests vascular problems. Was ok first reduction but struggling more each time as dropping 5 every 5 days. In a lot of pain and mobility issues worsening each day. Just wondering if anyone else has had similar advice re scan

[Yellowbluebell]

Hi and welcome to the forum. Dropping 5 mg every 5 days is way too fast and I am not surprised you are in pain. Other members will be along in a bit to advise you as I personally haven't had a pet scan or had to taper at the rate you are. YBB

[Devoid in reply to Yellowbluebell]

THANKYOU it’s just so difficult , but really lovely and helpful to have others experience to get through this!!

[PMRpro Ambassador]

If they want a PET scan then you should be on 10mg or below if it may show nothing even though there is inflammation. Unfortunately I do know a couple of people who were forced to reduce for diagnostic scans and then had a lot of difficulty getting things under control again.

However - what dose have you got to? How long had you been at 40mg?

PMR should be under control with 20mg or even less but reducing at that speed may actually be causing steroid withdrawal rheumatism and you aren't getting over the last reduction before the next one reinforces the effect.

[Devoid in reply to PMRpro]

Started on 40 June 6th and had temporal artery biopsy on June 18th, down to 35 on 20th which went okay,though I have never been pain free and fatigue a real issue.30 from 27th June. Then dropping 5 every 5 days with scan booked for 18 th july

[PMRpro Ambassador in reply to Devoid]

At least you only have 10 days of pain and disabilty before the scan. Do you have any GCA symptoms? It does worry me a (big) bit when they assume it is OK to reduce the dose when a TAB is negative - it doesn't mean that you haven't got GCA, it means they didn't find what they were looking for (giant cells or signs of inflammation) and there are several reasons for that including the fact it forms skip lesions and it possible to miss them in the histology. It may not be present in the temporal artery at all - it doesn't affect all arteries evenly and can be quite localised. A positive TAB is 100% the truth - a negative one means they should go by suspicion and symptoms above all.

The fatigue is the autoimmune disorder, whatever it is, and is a feature of almost all a/i disease. Maybe these links in this post may help explain about living with a/i disorders and managing life as best you can:

healthunlocked.com/pmrgcauk......

[Devoid in reply to PMRpro]

Thanks for the advice, just spoken to rheumy nurse and she has given me some good advice re pain relief and rest, so eh oh 10 days to go!

[jinasc]

Have you a date for your scan?

[Devoid in reply to jinasc]

18th July

[jinasc in reply to Devoid]

Ok.

Watch your eyes like a hawk and if any blurry, flashing lights etc..............up the pred fast.

Roll on 18th July..................

But like PMRpro, I worry a big bit as well.