Hello everyone

[Groggrim]

Hi, I was diagnosed with PMR last August and given Prednisolone 15mg. I felt better immediately but the pains came back and the diagnosis was in doubt. I was given a reducing schedule. I am still on this and doctors can't decide if I have PMR or not. I have a family history of auto immune illness, RA and PMR.My doctor has more or less let me get on with it and I have to update her from time to time.

Meanwhile I have joined this forum because it's a bit lonely out here by myself

I will be 68 next month and I am female, a wife, mother of three and grandmother of four.

[SnazzyD]

Hello. So, did the pains come back while you were still on 15mg? I can’t quite decide if you are still on 15mg or went ahead with reducing.

[Groggrim in reply to SnazzyD]

Hi, sorry, brain fog and muddle head. The achy muscles came back gradually. I have been reducing since last October. Ok until after Christmas when I got to 7mg, now down to 4.5. might have been a bit too quick but trying to get off Prednisolone as I don't recognise myself on it due to the effects

[SnazzyD in reply to Groggrim]

To get this far in 5 months is a cracking pace and it sounds like you have gone past the dose you need to keep inflammation at bay. Personally, I think it a bit rash to base changing your diagnosis on pains coming back when you have gone so fast. Unfortunately PMR is not at home to an enforced plan; it does its own thing and you need to react to that.

What side effects have made you feel like you don’t recognise yourself?

[Groggrim in reply to SnazzyD]

Irritable, forgetful, slow witted, fatigue, headaches. I last felt ok at 6mg

[SnazzyD in reply to Groggrim]

So, if you were ok and then this started as you reduced, it sounds like you are going too fast for your adrenal function to come back online. It has laid dormant for a while because you have had bucket loads of the artificial steroid that has taken place of your own cortisol. Usually 0.5mg at a minimum of 4 weeks is better. Slower if you still feel done in. Any new dose needs to be dwelled on for a couple of weeks to make sure your PMR inflammation isn’t coming back. Do have a read of this as it is essential reading for anyone under 10mg.

healthunlocked.com/pmrgcauk...

But, if you are getting pains too, that comes first and you need to get that under control.

[Groggrim in reply to SnazzyD]

I went fast because the GP plan was fast (off prednisolone in 5-6minths)

[SnazzyD in reply to Groggrim]

That pace is in no guidelines for PMR. Was this the plan with PMR in mind or was it because they were doubting the diagnosis?

[Groggrim in reply to SnazzyD]

Not sure, I felt rather dismissed. ( I have a lovely young female GP now who is much better.)

[Groggrim in reply to SnazzyD]

Daughter and grandson here now. Speak again later

[Miserere in reply to Groggrim]

I was able to gallop down to 7mg from 15mg initially but after that flares began to happen - and perhaps sometimes the adrenals were slow to respond as well. I have tried tapering several times since and did once get down to 5.5mg but then another flare. 7mg seems to be my base line but I've never been above 15mg - that was at the beginning and only for three weeks. I am now working my way down to 6.5mg - slowly! See DL's tapering plans. I have a house move coming up (fingers crossed) so am taking it very slowly this time.

[Groggrim in reply to Miserere]

Thank you for sharing

[PMRpro Ambassador]

Hi and welcome!!! You won't be lonely here!!

[Groggrim in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

I have replied to your other post re adrenals, but maybe have a look at this as well for general info, although you are not new, new to PMR -

healthunlocked.com/pmrgcauk...

Extra on tapering -

healthunlocked.com/pmrgcauk...

[Zebedee44]

Hi, I’m 68 this month and also feeling the effects of adrenal insufficiency that you describe. I live alone and my two grown up kids live a long way away. As yet no grandchildren. I live in hope.

Actually I live in East Sussex and have taken over the local PMRGCA support group which brings a few of us sufferers together once a month for coffee and a chat. You can get details of your local support group from the charity PMRGCAUk. And there is a monthly zoom meeting for anyone anywhere on the last Wednesday of the month if getting to a meeting is difficult.

You can’t be lonely here, there’s always somebody to talk to. Welcome.

[Groggrim in reply to Zebedee44]

Thank you for the kind welcome 🙂