do you agree with my tapering plan?

[musicalJ]

As instructed by the rheumatologist, on 15th August I began taking 9 & 10mg pred on alternate days. The frequency of pain in my left ear and the left side of my head increased and I developed a new pain, at the back of my head on the lower left side. A couple of times I had pain in the top right of my head, which I had not had before. I was needing a lot of rest, but persevered. After a bit over 4 weeks it was obvious that my GCA was no longer under control and yesterday, as an experiment, I took 15 mg. By mid-morning all the GCA symptoms had gone and I was beginning to feel better than I had for several weeks. This morning I took 15mg again and rang the patient advice line at the rheumatology clinic. The answering machine informed me it might be several days before they rang back, but because of the new symptoms I felt it was more appropriate to talk to them than to a GP, so I left a message. In the absence of further advice my plan is to take 15mg for 7 days, then 11mg for 7 days and if I am stable on that go back to 10 mg (where I was before 15th August), staying there for several weeks if the symptoms remain under control. Then I thought I would try 10 & 9.5 mg on alternate days (having had a row with the rheumatologist over the 7 week slow taper I am trying hard to be obedient). The rheumatologist informed me that adrenal insufficiency does not occur at doses above 5mg, but I feel that part of my problem with the taper I have been trying was adrenal insufficiency and had it not been for the new symptoms and loss of control of old ones I would have persevered in the hope that my body would eventually adjust. Does anyone agree with my plan?

[musicalJ]

To my amazement a nurse from the rheumatology clinic has just rung me back. She said she will talk to a registrar and ring me again.

[PMRpro Ambassador]

I think your plan is fine and what we would have suggested, You know our views of the alternating day approach but actually - it is blatantly obvious that 10mg is only just holding the inflammation and you can't manage on less.

And as far as the slow taper is concerned - it gets you to the same place at the end of the month so sheer stupidity to object to you using it. In fact, in 7 weeks you might be where her alternating days gets you in 8 but more comfortably because her approach is only 1/2mg per month. That is sheer ego on her part.

I wonder if a chat with your GP about this might bear fruit.

If you mentioned GCA symptoms I suspect they may have realised this is more urgent.

[musicalJ]

Further amazement - I now have an appointment to see a rheumatologist tomorrow! I should have more faith!

[PMRpro Ambassador in reply to musicalJ]

"a" rheumatologist - could we hope it is a different, more broad-minded one?

[musicalJ in reply to PMRpro]

Unfortunately it's the same one. I considered trying to rejoin my previous one, but she heads a team and if I succeeded in following her there is no guarantee I would see her.

[PMRpro Ambassador in reply to musicalJ]

But you might be able to call her in as head of the team???

[DorsetLady PMRGCAuk volunteer in reply to musicalJ]

As PMRpro has said - hope it’s a different one, as previous seems to have odd ideas… and as said you know our views on the slow tapering plans as apposed to alternate days.

Yet again, mind boggles at some Rheumies approach - undoubtedly the quickest way to get off Pred is to taper sensibly [ie. slowly] - not sure why they cannot get their heads around that.

[piglette]

Your plan sounds good. You can tell whoever said that you have no effect from your adrenals until 5mg they are WRONG, in my case anyway.