Continuing with hydrocortisone after synacthen test or go back to pred? Dilemma 🙄

[Pollyanna16]

I’m not feeling great on hc & wondering if I can switch back to my 3.5mg pred as my appointment to speak to the endo is not for another month & the rheumatologist similar. I have been on 20mg hc morning, 10 lunchtime & 5 if needed at 3, a regime I find very tricky to keep to. In fact I’m supposed to take the 1st dose at 6am the 2nd at 12 with food which is an absolute pain. However I’ve mostly ignored that & taken it with meals at the normal time. The switch was in preparation for the synacthen test which was 10 days ago, this was at my request as a review of adrenal insufficiency diagnosed in 2018. I’m tempted to write to the endo & hope for a response. What do you think? I’m definitely struggling on this regime, though the heat’s not helping & we go to Portugal on 9/9 I need to feel better by then!

[SheffieldJane]

I can relate to your worries. I’ve got a family visit to Australia in September and no Rheumatologist appointment until November. My Endocrinologist wants to see me when I have dropped to 5 mgs. Pred. ( on 6 mgs) Not feeling great either, fatigue is at its worst yet. I have sent a forlorn couple of emails to Rheumatology.I would try to make contact with your Endo and see if there is any way you can feel better for Portugal. They are in the micro business of enabling you to feel better, after all. Hydrocortisone is to stimulate your Adrenals and doesn’t do much for any underlying disease, as you know. Pred helps the disease but does less for the adrenal recovery. Although I have known people on low dose Pred permanently because of Adrenal function issues. You need expert advice and to ensure that your insurance covers you for the unexpected. Portugal is a lovely, civilised country, there are definitely much worse places to be, if you get sick. Let us know the upshot. It is maybe less complex than we fear. As long as you have some fuel, to keep you going. I hope you have a lovely time. Xx

[Longtimer in reply to SheffieldJane]

I hope your holiday in Australia goes really well. My neighbour's daughter arrived 2 weeks ago from Adelaide, she is here for 3 months...she has quite severe back trouble so got assistance at the airports. I told her it's her fault of this heatwave, she must have brought it with her!...She looks very relaxed in the heat!......we are out of practise.....

Hope all goes ok.....

[SheffieldJane in reply to Longtimer]

Thanks Longtimer. Business class will make the journey bearable and I have learned patience, like we have to. Just don’t want to disappoint them by arriving, hugging everyone, then going into a coma!

[Longtimer in reply to SheffieldJane]

Business class sounds good to me!......I'm sure your family are now aware how things can be, even travelling that far can take days to get a normal routine for some people!...seeing your family will be worth it.....

[Pollyanna16 in reply to SheffieldJane]

Hi Jane, thanks for your helpful reply & I am sorry you are suffering such fatigue with this trip in the horizon. I wouldn’t have thought a reduction sensible whilst travelling. Dependant on how hectic things are when you get there you might manage it. Anyway ….. I did ring the endo’s secretary about 10 days ago to say I was running out of hc & what should I do but endo hasn’t got back to me. I’m beginning to think there’s no harm in returning to my old 3.5mg dose of pred. Reading PMRpro’s articles & other comments has been helpful. I just find on the hc I seem more susceptible to the heat & feel anxious about getting up early to take it with food etc. I don’t have PMR pain anymore but constant aches & quite severe muscle pain particularly around the pelvis, plus oa in knees & wrists . Neither pill will help that! Interestingly I felt rather sick midday yesterday when it was very hot & whilst we were in Provence in June I felt the same. Reading one of the articles it was one of the signs of adrenal insufficiency. I suspect my synacthen test is going to come back pretty low. Take care & hope you get some feedback from the powers that be soon.

[SheffieldJane in reply to Pollyanna16]

I have been prostrate on the bed with a powerful fan blowing over me., whilst the men in my family sun themselves in the garden. I have also experienced sudden short lived episodes of sick dizzy feelings, the above helps. Maybe drop an email to the Endo confirming your intentions. This may galvanise them.My gut feeling is that you will be fine. I wish I was going to Europe. I adore Lisbon.

[PMRpro Ambassador in reply to SheffieldJane]

Probably cooler than the UK today!!!

[powerwalk]

I went on hydrocortisone for a week before a synachten test but then just back to Pred as usual. My test showed basically little or no adrenal response which was disappointing though not surprising and the Endo consultant said to stay on pred. I've often thought would i feel better on hydrocortisone but i rarely see good reports, especially if there is pain going on. Let us know how your test results go as very interested to see if yours has improved. I hope you feel better and have a lovely time in Portugal.

[Pollyanna16 in reply to powerwalk]

Thank you power walk. That all seems sensible. It has confused me because I was given About 3 months supply of hc & no indication of when I should stop taking it & go back to pred. Anyway I’ve decided with all the feed back & my anxiety over the hc to go back to 3,5mg pred today. This is the minimum dose it was suggested I take 5 years ago. What dose are you on? How long have you been adrenally insufficient?

[powerwalk in reply to Pollyanna16]

Endo guy told me to stay on 5mg but I did increase it a bit after months as I didn't feel too good. I've been on 5.5 for months. I don't feel good to be honest, I do have fibromyalgia too, so it all gets a bit mixed up. But I was never this bad, I could function, even working full-time. I'm 6 years on pred. I'd love to get lower but my body isn't havin it! I have been lower in the past but it was an ever increasing dose to this. Let us know how you go, all the best x

[PMRpro Ambassador]

This

karger.com/Article/FullText...

and this

ec.bioscientifica.com/view/...

both suggest that prednisolone is as good as HC in managing secondary adrenal insufficiency.

I read an article recently that felt that pred was actually better for sustained effects - of course I can't remember where! There are others on the forum, in the past at least, who returned to pred because of HC adverse effects. It is after all about feeling well!

[Pollyanna16 in reply to PMRpro]

Thank you so much, very interesting that there seems little between them. A bit concerned about the higher rate of CV problems on pred but that does seem to be on higher doses 🤞🤞 As you may have read I’m fed up with worrying about it & reverting back to pred today. We will see what the consultants have to say when they eventually get in touch! X

[Ronzy in reply to Pollyanna16]

Hi yes it’s an really nasty complicated complaint,terrible in this heat. All the best 🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀