Tapering question

[Whitner]

I was able to taper from 12.5 mg of prednisone in January to 7 mg about 2 weeks ago. While on 7.5 pain in shoulders came back and stiff knees but I wanted to try to get to 7. At 7, neck, thigh pain and jaw stiffness were added to the list. The jaw stiffness scared me so I went back to 8 mg for about 5 days with no real relief so then I went to 10 mg which was working for about 4 days. Currently I have shoulder pain and stiffness in my knees so wondering if I need to increase to 12 mg and stay there for a while if that dose relieves my symptoms? Thanks!

[PMRpro Ambassador]

What is usually recommeded if you flare because of trying to force a reduction is to add 5mg to the dose where you flared - so from what you say that would be 7.5 plus 5, 12.5mg. It honestly doesn't work well trying to manage a flare by creeping up the dose. Going in fast and hard works best - even 1/2mg too low can make a difference!

When you were first diagnosed did you have thigh and jaw pain? Both are more suggestive of LVV (large vessel vasculitis) or GCA than PMR. If you didn't, then I think you need to speak to your doctor and discuss the possibility of your PMR having progessed or at least having resurged.

[sara44 in reply to PMRpro]

Slow and easy on tapering I have found that 0.5 is the max for me every 10 to 14 days but I have any symptoms I wait to reduce my dose symptoms are telling listen to your body

[Whitner in reply to PMRpro]

Thanks PMRpro. I guess it’s time to contact my doc.

[Whitner in reply to PMRpro]

I did have thigh, hip, neck and shoulder pain. The jaw stiffness is new.

[PMRpro Ambassador in reply to Whitner]

Mmmm - that is what concerns me. It might not be - but you need to check it out.

[Whitner in reply to PMRpro]

I know the jaw stiffness worries me too. I just emailed my doc with description of what’s happening and my plan to up pred to 12.5. I hope she agrees 😁

[SheffieldJane]

It may be that 12 mgs is your optimum dose which is our aim in tapering. I would be concerned about your jaw symptom as it tends to be associated with GCA and is peculiar enough to be a key indicator. In fact chewing gum for two minutes causing pain/ claudication could be considered a diagnostic test. I would definitely discuss this development with your doctor. It could be another reason for your taper failing. If you develop GCA symptoms you move into medical emergency territory and must move fast to safeguard your eyesight. 12 mgs would not be a high enough dose to deal with GCA inflammation. I think medical advice is needed.

[Whitner in reply to SheffieldJane]

I spoke with my doctor and she agreed with you and PMRpro that 12.5 pred wasn’t enough and put me on 15 mg until I see her again on June 30. I’m on my second day of 15 and feel much better! Many thanks to all for your information ❤️

[SheffieldJane in reply to Whitner]

So glad you are feeling better. Stay alert for any other GCA symptoms though. X

[Whitner in reply to SheffieldJane]

Thanks SheffieldJane. 15 mg seems to have gotten my inflammation under control. I hope to be able to start tapering soon.