Tapering Pain Question

[SVLady]

Do most of you wait until you are 100% pain free, 24/7, before tapering down to the next level? I am on prednisone and Kevzara so am tapering more quickly than others due to dramatic bone loss since starting steroids. I also have arthritis so it is hard to tell PMR pain from OA pain. Tylenol Arthritis often takes away residual pain but not always. At the moment I am soldiering on with tapering with some manageable pain most days. Any advice is welcome.

[PMRpro Ambassador]

Some of us would NEVER taper if we waited to be pain-free. If Tylenol is dealing with one aspect of your pain, the chances are it isn't due to PMR,

PMR is probably like GCA in that there is more than one underlying cause of the inflammation. In GCA there are at least 3 different mechanisms but only one of them will respond to the use of Actemra/tocilizumab or Kevzara/sarilumab, the one caused by the cytokine (inflammatory substance) IL-6. If the others are involved in YOUR inflammation - you won't get to zero pred without a return of symptoms, What dose of pred you will need can't be predicted. 8-10mg pred is a common sticking point, I am pain-free at 7mg, at 6mg pred the bicep tendinitis returns within a few weeks despite having been on Actemra for nearly 3 years. Even the biologics are not 100% successful. Not all doctors realise that.

If you have some pain that you suspect may be PMR, I would stop tapering for a few weeks and see what happens. If it is the PMR, it is likely to get worse. As I say, if painkillers help the pain, it is probably not PMR.

[SVLady in reply to PMRpro]

Your replies are always so helpful. Thank you for the input. I started at 15mg in June 2024 and am currently on 6 mg prednisone along with the Kevzara. My blood values have always been low normal so it is impossible to monitor my inflammation that way. I may stay on 6mg a bit longer to see how it goes otherwise I drop 1mg per week if possible. Thanks so much.

[PMRpro Ambassador in reply to SVLady]

You can't use the blood markers when you are on the biologics - at least, you can't with Actemra and I imagine it is the same for Kevzara. They stop the IL-6 occupying the receptors they need, and so no inflammation can form. If the inflammation doesn't exist, then the blood markers are not raised, the inflammation triggers the liver to produce proteins in response, CRP is one and the CRP and other proteins stick to the outside of red blood cells and change their characteristics so they clump and fall faster to the bottom of the tube used to make the measurement. No proteins, no raised CRP, no increased ESR (sedimentation rate).

It may be a bit fast at 1mg per week after nearly 6 months on pred and suppressed adrenal function. Once you are below 4mg you may need to go more slowly - it is said it takes 1 month per month on pred to recover.

[DorsetLady PMRGCAuk volunteer in reply to SVLady]

I may stay on 6mg a bit longer to see how it goes otherwise I drop 1mg per week if possible.

Even with Kevzara in the me]ix, , reducing Pred by 1mg per week is very quick. I appreciate you have bone loss, but as PMRpro has said Kevzara is not always the magic bullet some doctors think, and if it isn’t for you then you risk flaring - and probably ending up taking more Pred rather than less.