pain again

[Wendy-woo2]

hi everyone I have recently been in such a lot of pain and was told by my GP to increase my dose of pred from 5mg to 6mg which made no difference to the pain which was getting worse! It felt like someone was sat on my shoulders and neck and tops of my arms felt like I had been weight training and my hips and thighs ached. I finally got to see my rheumatologist two weeks ago who put me on 20mg for a week reduce 2nd week to 15 then 3rd week 10mg and back to 5mg on 4th week the side effects were not good but i knew from previous higher dose this would happen it took the whole week of 20mg before i felt pain free but as soon as i started reducing the pain has crept back in tried for about six days then spoke to GP who said i may need to reduce slower. Spoke to rheumatology nurse today who said must continue to reduce as planned and just take paracetamol! I am so confused now and I really don't want to be in so much p I really thought after five years things would be a lot better

thank you in advance

[SheffieldJane]

Oh dear that sounds brutal and wouldn’t have worked for me either. I would have tried an extra 5 mgs then returned to the dose I was last comfortable at. It does sound a well developed flare so that might not have worked. Maybe 10 mgs then a slow gentle taper would have caught it?

[Wendy-woo2 in reply to SheffieldJane]

Thanks for your reply I have increased a few mg in the past and it has put things right but it’s been a while since I have felt this bad I’m hoping my rheumatologist will be in contact tomorrow to offer me some advice as he was the one that made this plan that doesn’t seem to be working !

[PMRpro Ambassador]

Well that nurse is a bit of a chocolate teapot isn't she? Paracetamol may help withdrawal symptoms but won't help returning inflammation pain. If 5mg wasn't enough before - it won't be enough now. Were you OK on 10mg? When did the pain start to reappear - at 15mg?

[Wendy-woo2 in reply to PMRpro]

Hi thanks for replying I went from 6mg to 20 mg which finally eased the pain away after about a week then I was told to reduce by 5 mg a week after that The pain started when I reduced from 20 to 15 mg

[PMRpro Ambassador in reply to Wendy-woo2]

Possibly simply becuse the 5mg step down was far too big. Yes, I KNOW it works in short term use of pred tapers, I've done it myself. But it seems to pose problems once you have been on pred a few weeks and with PMR in particular. If it was steroid withdrawal it could well not have settled in a week - and then your body protested all over again.