Taper down to 5mg. Not feeling so good.

[lizg0017]

Does anyone have advice for identifying if the symptoms I’m feeling are Prednisone withdrawal aches/pain or if it’s the PMR beginning to return?

At 5mg for last month, I’m experiencing bilateral hip burn, left wrist pain, bilateral shoulder aches, bilateral upper arm muscle ache, bilateral back of thigh muscle ache, fatigue. All I’m getting from my GP is the steroid will cause bigger issues, stay on taper plan. My rheumatologist says to not freak out and breath through a paper bag.

Are these symptoms PMR reoccurrence or tapering side effects from Prednisone?Feeling discouraged from the States.

[PMRpro Ambassador]

Those are almost certainly signs you have reduced too far - and you have a pair of nincompoops for doctors!!! But it isn't their pain so they don't really care.

You need what you need to manage the ongoing inflammation - and if you continue to taper you will end up back where you started.

Lets be clear: pred withdrawal happens when you try to reduce the dose in too big a step and starts immediately before then improving over the next 2-3 weeks at most. A flare occurs more slowly and is a return of PMR, eventually in all its glory, and it increases over a period of 2-3 weeks or more..

And at this level of pred you may also experience signs of lowering the pred dose because your adrenal function is lagging behind. But that tends to be fatigue rather than the rest of PMR.

[Hollyseden in reply to PMRpro]

I am having aches and pains that I can't decide whether to blame on withdrawal or just too low a dose either. Luckily it hasn't gone to my legs and hips so far but my shoulders and arms really ache sometimes. Sadly, I don't mention it to my doctor because, like most doctors, she just blames the pred and"sooner you are off it the better" 🙄 My question is, should I stick at what I'm doing just now, or try a higher dose for a few days?. Just started taper between 4½ and 4. Thanks

[PMRpro Ambassador in reply to Hollyseden]

Find a different doctor who actually understands PMR. If it were me, I would try a higher dose for a week to see if it helps. If it does, it is proof it isn't the pred but a flare of the PMR. Also if the pain gets worse at lower doses it shows it can't be the pred. Though no doubt she will say it is because you have been on pred even longer...

Yes, sure, the sooner we are off pred the better, but not if the PMR is still active and, as we all know, that can be a long story.

[lizg0017 in reply to PMRpro]

Totally agree. I bumped it up to 6mg from 5mg yesterday. And this morning upon wakening, the pain is less than yesterday at 5mg. Maybe pain level of 1 or 2 rather than a 5 yesterday. I still feel the PMR, but it's definitely more subdued. My instincts tell me 5mg of Pred is my unlucky number right now. So I'm planning on staying on 6mg til I see the rheumatologist January 3rd. Thanks for your response.

[JulianJ in reply to lizg0017]

I'm on my third try to get to 5, still on 5.5 at the moment for another week.

It was hard bouncing up a few mg's like a spring. Take your time and listen or rather feel what your body tells you.

You are the only one that can feel your pain and no doctor can tell you what you need. When I started to tell my doctor what I was doing things started to feel a lot better, getting a little control over this thing!

[GerriMc]

Yep, it’s a puzzle. I was down to 4 and was fairly comfortable. I got a bout of cellulitis following an insect bite and have been struggling every since. I’m at 5 now and strongly thinking of going to 7 to try to get through Christmas. Very sore hips and now shoulders joining in. 🙁

[lizg0017 in reply to GerriMc]

Almost hate to say "I feel your pain". But I do. Best of luck getting through the holidays. Thanks

[GerriMc in reply to lizg0017]

You too Liz! 🎄🎄🎄