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 in reply to Kiwisufferer2019]

I hope 7.5 is going well for you and you're not having withdrawal symptoms. I made the switch to hydrocortisone 3 days ago (50mg/split dose)! I've had some issues but nothing horrible so we shall see. I HATE taking so much - I think it's the equivalent of 12 Prednisone/10 Medrol - I was down to 3.5 Medrol. I almost started at 30 or 40 mg but decided to follow endocrinologist's order! Wishing you smooth sailing.

[Kiwisufferer2019 in reply to StellaBulldog]

Good luck to you too, it's certainly a journey. This forum is amazing, so much support and information. Janis

[DorsetLady PMRGCAuk volunteer in reply to StellaBulldog]

He believes I have steroid withdrawal (same symptoms of adrenal insufficiency but is different and not very common?)

Steroid withdrawal is very common - many get it at some time during their taper after each reduction, but what you describe is more likely adrenal insufficiency which is when your adrenals are struggling to work again.

There is information in the FAQs regarding adrenals - and others experiences - but as PMRpro has already suggested a new post would elicit more replies -

healthunlocked.com/pmrgcauk...

And this re steroid withdrawal -

webmd.com/rheumatoid-arthri...

[StellaBulldog]

Thank you, will do!