I'm down to between 3 and 4 mg, but am now all achy. So I took 8 mg of prednisone. Will taper starting tomorrow. Is this correct?

[blueisgreen]

Have been on prednisone for PMR for 5 years. Have been doing slow taper from 30 mg to 4.

[piglette]

Make certain the aches have gone before going back to your original dose. You can take 8mg for say a week, if you are OK go down to say 6 or 5mg for a week and see how it goes.

[blueisgreen in reply to piglette]

Thanks. I'll try this.

[DorsetLady PMRGCAuk volunteer]

Depends what causing the aches. Probably not a good idea….if it’s a flare then doubtful one day of 8mg will clear the built up inflammation….if it’s something else then 2 or 3 days may suffice- bit difficult to say as we don’t know what’s caused it. Have you done anything over the last week to trigger it?

Maybe have a look at this post - and specifically how to deal with a flare, if that’s what you think it is -

healthunlocked.com/pmrgcauk...

[blueisgreen in reply to DorsetLady]

I can't think of anything I've done differently to cause the relapse. I've been a bit down is all. I'll look at the post you recommend. Thanks.

[DorsetLady PMRGCAuk volunteer in reply to blueisgreen]

Okay…then you probably need to treat it as flare of the illness because you’ve gone to low on Pred…

[PMRpro Ambassador]

If 8mg sorts the symptoms then stay there for up to a week and then go straight back to 5mg if that was good. You might even be fine at 4mg - how long had you been on it before trying for 3mg?

[blueisgreen in reply to PMRpro]

I've been doing the slow taper over 4 years.

[blueisgreen]

I've done the slow taper for 5 years now. Was excited that 4 was working. So just started 3, then 4 for 7 days, when all this relapsed. However, I must say the RN in my rheumatologists office just called me back (I'm in U.S.). She is strongly recommending I take the Methotrexate. I argued about the side affects but she said they would start me out very slowly. She will also ask my rheumy about a test of my adrenals. A bit confused but as usual the doc wants me to reduce prednisone overall. I might give it a try.

[PMRpro Ambassador in reply to blueisgreen]

If you are already down to below 5mg then it is rather OTT to add all the potential adverse effects and imunosuppression of MTX to the pred. There is no evidence that MTX will reliably get you off pred altogether and IMHO while it may have a role if you are stuck in double figures doses of pred, to use it now is irresponsible - and I know both immunologists and rheumatologists who agree.

[blueisgreen in reply to PMRpro]

I agree with your assessment but it’s a difficult position in the face of this RN. Given how completely busy the office is because of Covid, I’m going to keep trying to talk directly with the doctor. But that won’t be for a few weeks. So in meantime I’ll take 8mg again tomorrow and if symptoms are gone I might start to taper again.

[cranberryt in reply to blueisgreen]

Don’t let them bully you into doing something you don’t want to. When you get to doses under 7ish, it’s maddening that they still push steroids sparers. I gave into my rheumy and ended up with the start of liver damage. It wasn’t worth it. It’s been slow going for me but I made it from 9 to 3 eventually, without the other drugs. In the US especially, it’s hard to deal with these doctors that seem to treat everyone as s formula and not an individual. If YOU want to do it, then go for it. But don’t let them force your hand.

[blueisgreen in reply to cranberryt]

When I finally talked to my doctor (instead of the nurse), she we fine with letting me figure out doses on my own, as she has all the way through. She also didn't push methotrexate .

[PMRnewbie2017]

Could I add, if you drop from 4 to 3 that may not seem much but it is a 25% reduction. Personally I have found it even more important to reduce by the tiniest amounts. Around 10% or even less. This does require some nifty maths, a supply of 2.5mg and 1mg tabs and a sharp knife or pill cutter. Are you absolutely sure you are flaring or could it be steroid withdrawal? I've been down the 4mg and onward reduction road enough times now to know that my muscles don't like less pred, and their sensitivity is not a PMR flare.

[blueisgreen in reply to PMRnewbie2017]

Thanks for that info. I should have figured that out given the difference between 3 and 4. But I'm confused about what the difference is between steroid withdrawal and a flare. Do you treat it differently if it's one or the other?

[PMRpro Ambassador in reply to blueisgreen]

This is what I wrote lower down the page:

The effects of steroid withdrawal tend to appear immediately you change your dose and then improve over the following week or two. If the dose is too low to manage the inflammation then the effects may take several days to show - even weeks - and then steadily worsen as the inflammation builds up. Either way, keeping the size of a change in dose as small as possible helps as does not changing the dose every week or two.

Plus this:

Some people who suffer badly with steroid withdrawal just have to put up with it until it improves - and that is encouragement to taper as slowly as possible, in that reductions should be as small as you can manage and using one of the slowed tapers we bang on about all the time. One day of a new dose followed by the old dose for a few days often makes it easier to cope with the problem. After a few challenges with the new dose at intervals I find my body adjusts and thinks it will be fine tomorrow! Then comes a point where I feel better on the new lower dose than I do on the older higher dose.

[blueisgreen in reply to PMRpro]

Yes I saw that earlier. But does one treat a flare differently than steroid withdrawal.?

[PMRpro Ambassador in reply to blueisgreen]

Well yes - steroid withdrawal is just your body getting used to the new dose which isn't too low to manage the inflammation, just different, and you have to be patient. A flare is because the new dose is not enough - so you need to go back to the old dose that was enough and stop the increase of inflammation building up.

[blueisgreen in reply to PMRpro]

Not to split hairs, but how do you tell the difference as it's happening?

[PMRpro Ambassador in reply to blueisgreen]

Sorry - I can't put it more clearly than I did in the comment above. Steroid withdrawal tends to start immediately you change the dose and then improve over time, a flare takes longer to appear and then steadily worsens. There isn't a sign up, you have to be observant and get to know your body and your PMR.

[DorsetLady PMRGCAuk volunteer in reply to blueisgreen]

See this post from FAQs -healthunlocked.com/pmrgcauk...

[Loyd]

Oh your question pretty much identical to mine!! Will be interested in your replies. It’s a pain is t it?!

[blueisgreen in reply to Loyd]

Clearly it's a pain, but most of all it's discouraging as it has taken me so long to go down to 3-4mg.

[cranberryt]

I will also add that when you get back down to 4, you might try alternating 3.5 and 4 instead.

[DrRon]

how would anyone know the difference between a flare and a steroid withdrawal?

[DorsetLady PMRGCAuk volunteer in reply to DrRon]

See this post from FAQs -healthunlocked.com/pmrgcauk...

[DrRon]

Info please. some of you speak of changing a daily dosage, up or down, as you feel you need it, but without consultation with a doctor or specialist ... do you really do that?

[PMRpro Ambassador in reply to DrRon]

Some of us have discussed it in advance so that if a flare shows up we don't have to wait weeks to deal with it. A few of us have carte blanche, reporting back having done it.

The effects of steroid withdrawal tend to appear immediately you change your dose and then improve over the following week or two. If the dose is too low to manage the inflammation then the effects may take several days to show - even weeks - and then steadily worsen as the inflammation builds up. Either way, keeping the size of a change in dose as small as possible helps as does not changing the dose ever week or two.

[Nextoneplease in reply to DrRon]

Yes, I have done, DrRon!

Out of necessity rather than any agreement. I was flaring at 12.5mg so went back up to 15 and have slowly reduced back to 12.5 over a couple of months. To be honest, GP doesn’t seem to take much notice - so far she’s approved my prescription requests 🤞x

[blueisgreen]

As it happens I was able to wrangle a phone visit with my rheumy tomorrow. I much prefer talking to her vs the nurse who was rather nazi-like. We'll see. I also have an appointment with my general practitioner tomorrow to discuss my ingrown toe nail. I'll bring all this up with him. I also have a large pain in my left side centered under my breast. Curious.

[PMRnewbie2017]

Your pain could be costochondritis, not uncommon for some with PMR. On the other matters, PMRpro has said it all. It is sometimes very difficult to distinguish between a flare and steroid withdrawal. However if you have been a PMR patient for several years and have managed to slowly get down to 4mg or so you should have gained sufficient knowledge about how you feel when a flare is brewing because they don't often hit you without any warning signs. One diagnostic technique would be does paracetamol or another pain killer sort out the aches? If yes, then it's not a flare. Steroids mask the symptoms of so many other conditions so sometimes these surface at the lower doses. Plus, throw delayed onset muscle soreness into the mix as we do more as we feel better. I can strain a tendon or ligament so easily these days after 4 years of Pred. If i sleep in an odd position my neck and shoulders can be very sore and PMR -like for a few days. It is so easy to reach for the Pred and it is so difficult to prove a flare especially as blood markers lag. That's why we say symptoms rule but you have to be sure about the symptoms. Personally i think PMR is active for up to 3 years, receeds over the next year and it takes up to another 2 years to get off steroids. Hence PMR lasts an average of 5.9 years, certainly not 2.