Zero Pred zone

[Queenie1901]

I updated my Bio to show my DSNS taper over last 3 months down to zero. Along the way I was unsure about emerging wrist joint swelling and aches (not pain), ache in the bicep of my dominant arm ( not both) and swollen knee joints which I have had in the background for 2 years. No pain. One paracetamol masks all 90%. I have done a lot of gardening and knitting projects over the last few months so felt it was DOMS and overuse of joints. Some weeks back, as a test, I tried an increase of 5mg for a week which eliminated all then a two step step down and back to final taper from 0.5 mg to zero. At zero now for a week and I still have these same joint aches. Feeling well. Just not sure how to proceed. Watch and wait? Any ideas? I have sent an eConsult to my GP for advice too.

[piglette]

It does seem that you may need a small amount of steroids for a bit longer. I know we are all longing to get of the pred, but the PMR does tend to hang around longer than we want.

[DorsetLady PMRGCAuk volunteer]

You say 5mg eliminated all pain- which is probably what we would expect .. more interesting is what happened in the 2 step down - so can you explain exactly what you did - so how much each time, and how long at each step. Plus was there any return of aches during that?

How long to get from last drop down from 0.5mg to zero? Probably not as long as you may have needed… many find that 0.5mg is still plenty to halt pain, whereas zero isn’t.

However would also ask has the swollen/pain joints issue been addressed at any time…could be RA or another form of inflammatory arthritis - so maybe follow that up.. paracetamol working well may indicate there is something else in the mix.

Re-reading your bio does look like you are pushing the end game with PMR… and that’s never a good idea…as we say on many an occasion the lower the slower… 😊

[Queenie1901 in reply to DorsetLady]

Thank you for your prompt reply. I did 7 days at 5mg, all OK, 3 days at 3mg, all OK, 3 days at 1mg, some aches noticed but minimal. Then back to 0.5 mg. Then you are right I didn't do the full DSNS taper after that. Too complacent and probably paying for it now. I am also waiting for a reply from my GP about the joints issue. Had to send photos!. 🤔🤔

[DorsetLady PMRGCAuk volunteer in reply to Queenie1901]

Probably should have stopped at 1mg….for a while… but too late now. Would agree with PMRpro that going back to 1mg would be a good idea and stay there for a while before you embark on any further reductions…and let us know how you get with the GP.

[random901 in reply to Queenie1901]

Hi Queenie! Just re-viewed Dr Sarah Mackie's video, then opened your post. Both inspiring. Am at 12.5 pred & feeling pretty miserable atm with aches, pains, fatigue, plus frustration. Knitting and gardening are my staple indulgences, and like you am experiencing problems with my dominant RHS bicep. Think I'll follow your example re walking and try and rebuild my ability. In fact, I'm off to the co-op 100m away and shall attempt to waddle without a break. All the best! 🙂

[Queenie1901 in reply to random901]

Yes, knitting and gardening for me too. I had to stop them earlier in my PMR journey so the pleasure in doing them again has been great. Hard to stop before doing too much. Note to self! I hope your walk was rewarding.

[random901 in reply to Queenie1901]

Did it! Thanks.

[PMRpro Ambassador]

"I still have these same joint aches"

When did they reappear?

I'd say you need to take a great deal longer over the last 1mg (at least) and you may need a tiny dose ongoing - for the time being at least.

[Queenie1901 in reply to PMRpro]

So having tried the +5mg and stepped back would it be sensible to do that again or just go back to 1mg or 1.5 mg? The joint issues reappeared about 1mg

[PMRpro Ambassador in reply to Queenie1901]

Difficult to say - I'd try the 1mg approach first, if it works, great. If not a few days with 5mg and back to 1mg though you say you had aches there so maybe 2mg and work from there on a VERY slow DSNS taper. And always use the final step with zero as the new dose. You can't cheat PMR - it always bites back if it is still there.

[Queenie1901]

Thank you for yourhelp to sort out my thoughts. No excuse for me going too fast!