On hydrocortisone after being on prednisone for close to 5 years

[Dancer98]

Anyone else had experience with going on hydrocortisone from prednisone after symptoms of adrenal insufficiency? Endocrinologist saying maybe she can get me off medication when I reach 10 mg.

[OPO4]

I went from Prednisolone to Hydrocortisone about 14 months ago because I also have Addisons Disease and am managing reasonably well.

[PMRpro Ambassador]

It may do - providing the PMR is in remission. If it isn't, the hydrocortison won't manage the PMR well at all and a flare is a very likely result.

Pred is now also used for secondary adrenal insufficiency - doesn't have to be HC.

[1951grumpa]

Last September I tried the HC. I recently went back to 5 mg prednisone because of growing inflammation. I just went up to 7.5 ho get it back under control.

[Ronzy]

well what can I say first time round loved pred what a busts it gave me though it a wonder drug.

But this time no sure ,not happy atall no boost whatsoever couldn’t get off it quick inough 😬 I’m off it now but far far from being write

All the very best. Tack care

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[StellaBulldog]

I've been on Medrol since mid-December -Had successfully reduced from 48 mg to 4 mg and was doing well. Reduced from 4 mg to 3.5 mg and have had fatigue, weakness, lightheaded, brain fog, nausea. No signs of PMR flare. Went back to 4 for a couple days, then 6 and still a mess. I felt like I was in crisis on 7/4 and ended up taking 18 mg and 16 the next day! I felt more human and on doctor's instruction, I've been at 8 mg for 5 days but not doing well. Saw Endocrinologist today and he believes I have steroid withdrawal (same symptoms of adrenal insufficiency but is different and not very common?) Switching me to Hydrocortisone - 50 mg (split dose) for 2 weeks and reduce by 5 mg every 2 weeks until I get to 30 mg and we'll reevaluate. I did the conversion and the 50 mg Hydrocortisone is "only" 10 mg of Medrol but I haven't been that high in over 4 months and since I don't seem to be having a flare I hope this is the right diagnosis and course of action. Time will tell. Sorry so long. Anyone have a similar experience?

[PMRpro Ambassador in reply to StellaBulldog]

If you want a response to your question then you need to post as a new thread - few will see it here in an existing thread as few go back to threads they have already seen,

[Kiwisufferer2019 in reply to StellaBulldog]

Hi Stella Bulldog. I have suffered with withdrawal symptoms, everytime I tried to taper but at last I have worked it out, thanks to this forum. Even though I was doing the extra slow taper. About 2 weeks in, on the slow taper, I get headaches every day, and sore neck and shoulders , as well as aching thighs. My tramadol and panadol leviate the symptoms, which is how I finally realized it's withdrawal, not flare. I also get fatigue, but can manage that by not trying to do too much and having a rest after lunch. Still manage to take Meg for a gentle walk in the park twice a day! I just have to work through it. I had covid 2 weeks ago and was a little concerned, but I was good, just body aches, slight headcold and cough. Very lucky, and didn't upset the pmr. Good luck with your taper. I only go .5mg at a time and it takes me 6 weeks to get to the next dose. I have only ever taken prednisone for the pmr.

[StellaBulldog in reply to Kiwisufferer2019]

Thank you so much for sharing this. Interesting that you mention a sore neck and shoulders. I never had that until today. I'm baffled because I've now been at 8 mg for a week (I was down to 4 mg and feeling great for over a month, then down to 3.5 when I fell apart). The debilitating fatigue and the lightheadedness are a bit better, so that's a huge relief. I agree, this forum provides the best support. Sorry you had covid recently on top of dealing with PMR and steroid withdrawal. Thanks again and best to you on your journey.

[Kiwisufferer2019 in reply to StellaBulldog]

Every time I start another taper I get the sore neck and shoulders, and headaches. I used to think I was having a flare, but since all the information I've read on this forum I've realized it's withdrawal symptoms. Best of luck to you. I'm super excited to get to 7.5mg. I will stay on that for a couple of weeks then start again.

[StellaBulldog]

Thank you, will do!