Good outcome, and relief for the time being

[Zebedee44]

My visit to Brightons Royal Sussex Hospital today has been exhausting but I have come away knowing the outcome of my short synacthen test and having delayed surgery on the pesky pituitary adenoma that was revealed (unexpectedly) by MRI in January.

The good news is that my adrenal glands are capable of returning to full function as I taper off the steroids. They performed at 411 after ACTH was administered. I am delighted. Also quite pleased that hydrocortisone will replace prednisolone when I have the inevitable surgery on the pituitary gland and hopefully I won’t have to take pred for the rest of my life.

i have chosen to postpone the inevitable procedure till next year after a further MRI and providing I don’t experience any visual field disturbance. I just want to get emotionally and physically strong enough and preferably off pred. Evidently the pain in my face and body and the fatigue are not related to the pituitary issue, more likely just the tail end of PMR and reduced pred. I can deal with that.

[piglette]

That is terrific news. I hope you get on OK with the hydrocortisone and that by next year you might even have said Goodbye to corticosteroids.

[DorsetLady PMRGCAuk volunteer]

Good to hear, and very wise to postpone procedure [provided all okay] - and build up strength…

Good luck when it happens.

[Zebedee44 in reply to DorsetLady]

Thankyou. I feel as if I have control of my life again, and can deal with the challenges of PMR as I taper down through the lower doses of pred.

[Rugger]

That is a relief and it's so good that you're sounding more relaxed and positive about the way ahead.

Wishing you all the best for the pred taper and gaining your strength to deal with the procedure.

🌻

[PMRpro Ambassador]

That's great! However - don't reject the idea of pred for life entirely. Some people find pred preferable to HC in terms of adverse effects (yes - I'm not making it up!) and both are approved for management of adrenal insufficiency.

[Zebedee44 in reply to PMRpro]

Thankyou PMRPro, I have never been a fan of pill popping and previously favoured a more homeopathic approach to health combined with health lifestyle so I do find the daily pill popping of pred rather tiresome. The slow taper is working, the adrenal glands are prepared to return to normal function, leaving me hopeful that hydrocortisone delivered in a different way might bring an end to the pills.

The talks at the AGM on Saturday reminded me that I should also have been taking stomach and bone protection throughout this period which I have not done for the same reason, now left wondering if my gastritis would not have occurred if I had routinely taken a PPI.

PMR may not be a death sentence any more than a pituitary tumour is but it sure has felt like a life sentence!

[PMRpro Ambassador in reply to Zebedee44]

But the PMR is the bottom line - and HC won't manage it as well as pred. That's all.

[Zebedee44 in reply to PMRpro]

Thankyou, that’s disappointing. I am hoping that by the time surgery is necessary my dose of pred will be much reduced, especially as I now know that the adrenal glands do work. But even at 1/2 mg a month that’s another seven months of tapering pred ( from 3.5mg) and I don’t think I will achieve that speed of taper.

[PMRpro Ambassador in reply to Zebedee44]

They work when kicked hard with an exogenous artificial dose of ACTH. That doesn't mean that they will do so reliably day to day. Is the pituitary producing natural ACTH? Are all the other bits of the system working reliably? It's a bit like your car - the tank may be full but without a battery you won't get far, and vice versa. Or if a fuel pipe is blocked or cut - zilch. It isn't a simple straightforward process.

[Zebedee44 in reply to PMRpro]

I have an appt early in October to discuss with the Endocrinologist who is part of Brightons Neuroscience team. There was evidence of good cortisol levels from 9am blood tests done before the synacthen test but tbh endocrinology is a subject I know very little about. Might be my wishful thinking!

[PMRpro Ambassador in reply to Zebedee44]

It may be so - but while day to day functioning may be OK, the problem often comes in a stress situation of some sort when your adrenal function can't respond enough. Only time will tell.

[Grammy80]

I'm happy that you could come away with peace, knowledge...and armed to make decisions down the line. My best to you.💞

[Zebedee44 in reply to Grammy80]

Thankyou Grammy80