Tapering 10% - wildfire stress

[Mstiles]

Hello all,

This is a really stupid math question, if 10% of 13 is 1.3, does that mean it’s OK to go from 13 to 11?

My excuse: I’ve had to evacuate because of the Northern California wildfires. I’m back home for now but wiped out by stress and I’m unsure. Everything is packed and we may have to leave again with nowhere but a motel if we can find one. There are 21,000 evacuees from this fire alone. The fire is still active near us. It will be weeks before it’s put out. The smoke is really bad, designated hazardous for all groups. It gets inside the house even with an air purifier.

I stared having a lot of pain and increased prednisone from 11 to 15. I was there for 2 weeks, went back to 13, then 11. More pain and Fire stress. Back up to 15 and then to 13 for two weeks. I know yo-yo-ing is bad.

I’m pain free now except for the usual morning stiffness.

I did message my new rheumatologist and she asked what I had tapered down to and suggested I try ice, heat, and Tylenol. Not helpful. I’ve yet to message her back about raising prednisone.

I’m back to where I was 3 years ago.

[HeronNS]

You know, if I were you I'd stay at your current dose for a few more days to make sure you really are okay, and then taper by no more than 1 mg. Better a little slower than you might be able to manage than risk another flare. You have enough stress in your life right now. Hope things get better soon.

[DorsetLady PMRGCAuk volunteer]

Personally I wouldn’t complicate matters - lower teens I would (and did) decrease by 1mg until I got to 7mg - and then by 0.5mg a time.

Sorry to hear about your very stressful time - hope it will get better and your PMR settles.

[Exflex in reply to DorsetLady]

I started reducing by 0.5 once I got to 8 mg. I’m currently transitioning from 7 to 6.5mg using the DSNS schedule. My GP just said ‘it will take you longer, but you’re on a low dose’ [and off his radar (I guess)].

[DorsetLady PMRGCAuk volunteer in reply to Exflex]

But if you don’t have any flares, it may not take that much longer, and if it makes life easier, go with it!

[Coffeebeans]

Firstly, sorry to hear of your awful situation, I hope things calm down soon.

Personally with your recent history and all the stress of the fires and evacuation, I would stick where you are for at least another 2 weeks - that would give you 4 weeks on that dose.. I would then go down by 1mg if you are feeling ok and see how that goes.

Slow wins the game with this, especially in the midst of an awful stressful time.

[PMRpro Ambassador]

To be honest - I don't know you should be trying to force a reduction at all when you are under that stress. And I think 2mg is far too much more than 10% of your current dose. 1mg at a time is plenty - it isn't slow when it works.

[123-go]

Mstiles, we've watched on the news and read accounts of the devasting fires in Northern California and as much as it horrified us, what you are going through is unimaginable. It's disappointing that you are back where you were several years ago with PMR but as others have said, slow and steady with small, slow reductions in between. You can do this!

Sending my best wishes,

M.

[Mstiles in reply to 123-go]

Thank you so much.

[Hidden]

Stay safe to you and all yr family,

[piglette]

Why in earth is your rheumatologist suggesting heat, ice and Tylenol when steroids are the thing to sort everything out? We can always use ice and heat to relieve things occasionally of course, but not to compensate for too low a dose. As the others say, stick to the current dose, you don’t want to create problems.

[Mstiles in reply to piglette]

Thank you!Not exactly a helpful response.

[piglette in reply to Mstiles]

I extremely sorry if you feel like that. I was trying to be helpful not unhelpful. What I am trying to say, if you did not understand, is that you are better off using the steroids to support your PMR rather than reducing too much and then having to try and compensate in other ways.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

I think Mstiles meant Rheumy’s response wasn’t helpful, not yours…

[Mstiles in reply to piglette]

Oh no! I meant the rheumatologist response, not yours Piglette! You were very helpful! Fire stress is making my brain crumble. Sorry!

[piglette in reply to Mstiles]

I am so sorry, I must get my brain in gear!!

[SheffieldJane]

You are under extraordinary stress and doing pretty well. I wouldn’t taper while all this is going on. I’d go down by 1 mg max at your level, when things calm down. I am glad you are safe. It must be so frightening.

[Bcol]

Morning Mstiles, the fires that we see on the TV in California and other states of the USA and the world look horrendous enough, but to be involved in them at your level must be horrendous and I would guess your stress levels must be pretty high. I do have family in California and although not involved yet I know they have emergency bags packed. Nothing really to add that's not already been said but my own thoughts would be to stay as you are for at least a couple more weeks, depending on your local circumstances could be longer, then nothing more than 1mg at a time

[Boss302Fan]

I’d would stay at the dose where there’s no pain for at least a week or two before tapering. Are you taking non-enteric coated Prednisone? If yes, you can use a pill cutter to cut them in half. In the US we have access to scored 1mg 2.5mg 5mg, 10mg, 20mg meaning you could do 1.5mg. I wouldn’t do a 2 mg decrease. What tapering schedule are you doing? If okay with your Doctor I’d suggest a DSNS schedule.

[Hidden]

Oh, this is an awful time for you. Have seen on the news how devastating it is. All I can share is my experience after fractures with pred. I just stayed put, 11 mg , for a long time. I think it was 3-4 months. Too much other pain and stress to even think of lowering it, in fact I probably needed more. My best, 🤗

[Mstiles in reply to Hidden]

Thank you!

[ShouldaWouldaCoulda]

I am so sorry for all the troubles you’re going through. I can’t offer anything else but, Be strong

[Mstiles in reply to ShouldaWouldaCoulda]

Thank you, I appreciate it.

[OldGolfer]

My wife and I went through the Paradise wildfire. I believe that triggered PMR for me. Took a few months to find out what PMR is all about - and stress or no stress you need enough prednisone. If I were you I’d stay on enough pred be pain free for a few months. Sort your life out before stressing about prednisone dose.

[Mstiles in reply to OldGolfer]

How awful for you and your wife. So glad you made it!

[Mstiles in reply to Mstiles]

Thanks Bubble❤️

[blueisgreen]

Take care during these fires. I can't imagine being that much inside the fire zone. All I get is smoke in Colorado - but that's enough to do me in some days. I agree with others to just stick to your current dose until some of the other stresses settle down. I hope you get some relief soon.

[Bubble56]

I’ve just read your post and like shouldawouldcoulda I can’t offer anything else other my very, very best wishes to you. I feel heart sorry that you are going through this terrible time, as if this terrible illness isn’t enough!!!!!!