Advice re decreasing

[Glyngin]

Diagnosed with pmr March 2020 started on 20mg prednisone and decreased to 6mg by January 2021.Then had flare up March 2021 so back to 12mg & decreased slowly & now on 7mg but pain starting to come back.Any advice? Show I work through the pain as really don’t want to increase again.Fed up hearing about friends who are now down to 5mg after 10 months.

[jinasc]

Have I read your profile correctly and you were diagnosed with both PMR & GCA in November 2016?

[Glyngin in reply to jinasc]

Correct but stopped in 2017 & had been fine until I got Covid in 2020.Very strange I actually know 4 people who have been diagnosed with pmr since getting covid

[DorsetLady PMRGCAuk volunteer]

hi,

"Fed up hearing about friends who are now down to 5mg after 10 months."....doesn't help does it, but afraid one size doesn't fit all!...as we all know.

First question, are you trying to do too much, or keeping up with friends... neither of which will help, it's your illness, your body not theirs.

On your taper down, what dose did you last feel okay at?...and by slowly, what do you actually mean? Monthly tapers, 1mg a time, or 0.5mg a time, an "overnight" drop or a slower taper taking a few weeks to get from current dose to new lower one?

Any one of these things can affect how successful you are getting from a) to b)...but if a) is what you need and b) is too low - that's how it is.

If you know what dose you were okay (and really okay, not just okay) then go back to that initially and see if pains go. If they haven't after a few days then you may need to add in a bit more. See this post for info on dealing with flares, and deciding what's a flare and what's steroid withdrawal -

healthunlocked.com/pmrgcauk...

once you're back on track, whether it be with just a small increase or a bigger one (following advice in link above), I suggest you decrease by 0.5mg every month, and using a slower tapering plan - this is just one example -

healthunlocked.com/pmrgcauk...

[SheffieldJane]

I don’t think that you would hear the 10 month stories here. The most optimistic estimations are at least two years. The median duration is 5.9 years. You seem to have come down quite quickly in less than a year. 7 mgs is a tricky time because our own Adrenal glands have to wake up after being effectively switched off by the Prednisalone. This can give rise to more symptoms, fatigue etc. I got stuck at 7 mgs for a year as a flare would threaten every time I tried to lower, even by half a tablet. Working through the pain doesn’t work because the inflammation tends to worsen and a much higher dose is needed to control it. Please have a look at the FAQs on here, especially on tapering and the Adrenal function. Don’t compare yourself to your friends, they have either been misdiagnosed or they will face a relapse.

[Glyngin in reply to SheffieldJane]

Many thanks for the info I will definitely go back to 7.5 mg & stay on that for quite a while

[Glyngin in reply to Glyngin]

Back up to 10mg after getting to 5mg .Saw Rheumey consultant who wants me to start Azathioprine.After looking at side effects I am very reluctant does anyone have any experience with this drug ?

[PMRpro Ambassador in reply to Glyngin]

You would be much better posting your question as a new thread, few will see it here in the middle of an old thread.

[piglette]

I have learnt from bitter experience that PMR will always win given the chance. I find it is never worth trying to work through the pain, but to increase a bit and hit the PMR on the head so you can reduce again.

[PMRpro Ambassador]

You are never reducing relentlessly to zero - you are lookingfor the lowest effective dose that gives the same level of symptom relief as the starting dose did. It sounds as if that is 7.5mg for the moment at least. It doesn't mean you won't get lower - just not yet.

While it may be appealing to try to push through, taking even slightly less than you need to combat all the inflammation created each day means that the left overs will just build up until you end up back as you were to start with, which could well result in the dose being back where you were and starting over again too ...

[Chewy21]

I was diagnosed in October 2020 started on 20mg and I'm only down to 12mg. Tried faster and had flares so now I'm going slower.

[AncientMariner]

You need to be patient with this and listen to your body, if it is telling you enough, stop and take advice. Some practitioners will rush you down and often this only results in a kickback. It has taken me Three years of setbacks to get down to 2.5 mg of Prednisolone and I have just discovered that my Cortisol levels are so low I could have an Endocrine crisis which in certain circumstances can be fatal and have consequently been started on 15mg of Hydrocortisone daily. Steroids knock out your adrenal system and it won't always just switch back on, infact usually it doesn't and needs nursing back so don't get impatient Glyngin be good to yourself.

[Glyngin in reply to AncientMariner]

Many thanks for your comforting words of advice.

[AncientMariner in reply to Glyngin]

Friend, I started on 60mg daily after three days on IV drips of 1grm, that's nuclear. It does have an effect, I felt like the incredible Hulk in Frank Spencer's body and was decorating at 3:00 am in the morning. Thankfully I am now quite happy at sitting reading the Telegraph with a pint in a quiet pub. Three years.👍