endo visit - good news / bad news

[winfong]

I'll start with the bad news first ... It looks like 5 mg of pred is my bottom limit. I've failed a couple of times going any lower.

The good news is that now I don't have to worry about that anymore. Honestly, trying over and over again and again and feeling so miserable each time is a worry off my shoulders (both figuratively and literally).

So different from my rheumy - 0 mg in 2 years, no matter what!

Another thing she helped me with was very clear directions about how much to up, when, and then how to get back down.

[123mossie]

Maybe your bottom limit - for now. If you were only diagnosed in 2020 it’s early days yet. I had several wobbles around 5mgm but just stood still for a couple of months & picked up the tapering again. Your rheumatologist sounds sensible, don’t see it as a failure, it’s merely a pause.

[HeronNS]

Yes, just stay at five for a while, and every once in a while try a *very slow* taper again. I was actually at around 2 mg for a few years. At these low doses we get few if any side effects, so should just enjoy the benefit.

I did eventually attain zero, taking a whole year to taper from 2 to zero. Within about six weeks I was back on pred. Currently taking 3.5 after a rocky year. I'm grateful to be this low again.

[SheffieldJane]

I would be relieved about that too. Concern about my adrenal function holds me back when I taper at low doses. Nice to have a tapering holiday until you feel ready to reduce by half a mg again.

[SnazzyD]

I’d say, never say never. You’re only just over a year in and with a major op in between. Just isn’t your time yet.

[SusyTe]

5 mg sounds good to me - it currently seems to be my limit too - and that is after 5.5 years. I did get to 4 mg a few months ago but flared badly. You may find you can get lower when you are further along your PMR journey. I am going to try again next year, very very slowly.

[PMRpro Ambassador]

I can only repeat: when tapering you aren't heading relentlessly to zero, you are looking for the lowest effective dose and you have found that at 5mg FOR NOW. It doesn't mean you won't get lower, just not yet. We find a very common time for PMR to last is 4 to 5 years - so take a rest just now, maybe a few months, and then try 1/2mg using a slowed taper and see what happens. Take as long as you like over the 1/2mg and then rest there for a couple of months. It takes the stress out and stress is a big factor as you are finding. It is far too soon to conclude that is where you will be stuck forever.

[Viv54]

I think thats great news, as you say you feel the stress has been lifted . Enjoy that feeling ! Im looking forward to that day .

[Pixix]

I’ve failed three times to get down to 4mg from 5mg! My doctor said that sometimes he keeps people on 5mg for years, if that’s stable for them. Now, I’m OK on 5mg for 3 days, 4mg for one day…& repeat! I’m trying one more time now….& will see if I get there…dead slow fashion!

[PMRpro Ambassador in reply to Pixix]

And I would suggest: and repeat, and repeat and repeat ...

[Pixix in reply to PMRpro]

Will do!!