Changing from Prednisolone to Hydrocortisone?

[Suffolklady]

I was having problems with tapering with pred I’m down to 5mg but getting further has been challenging. I saw my Endocrinologist this week and talked about my adrenal function whether it was kicking in and how I was feeling rough to say the least even after being on the 5mgs for several weeks. He suggested trying hydrocortisone as an alternative 20mg then having a test of some sort to establish if my adrenal was waking up in a months time. He also said it might be easier to reduce on it with out so many side effects. My question is has anyone had experience of changing over and how did you get on? Was it better or worse?

[SheffieldJane]

I was in the same situation as you about a year ago. I was given a Synacthen Test that showed that my Adrenal function was underperforming. I was referred to an Endocrinologist who favoured swapping to 20 mgs of Hydrocortisone from 5 mgs of Pred. I was reluctant to do this as I was still experiencing PMR pain and didn’t think that Hydrocortisone would help. I also trusted and understood Pred. My Rheumatologist was more in favour of me trying Methotrexate to get off Pred. I am currently on 4 mgs ( chest infection and long haul flights slowed my taper). I feel ill and exhausted but not really in much pain, so I do wonder if I made the right choice just to stick with Pred alone. A second Synacthen Test showed a normal Adrenal function and when ( if) I get to 3 mgs I am to have another one. I would also be interested in other accounts of what people chose to do.

[Suffolklady in reply to SheffieldJane]

Thank you for replying, always interesting to hear about others views. My PMR is in a good state and I think that I’m stuck on pred just for the fact I can’t get off it. The choice was mine and as I wasn’t low enough in the Endocrinologist opinion taking pred 5/4 mg to get an accurate reading he thought it futile to take the test. I have been in a rut with my well-being for so long to have to not do anything other than try and reduce pred which I’m unable to do without total crash tiredness, you know the stuff, wasn’t something I was prepared to put up with. He explained about hydrocortisone and gave me the choice saying in a month I could have the test and it would give an accurate reading. That’s what I need for peace of mind. So I get my new meds next week get an appointment in a month. I don’t know what to expect whether I will feel worse better or the same it’s pot luck I think.

[SheffieldJane in reply to Suffolklady]

Yes I think it is too. I fear that this tiredness ( to put it mildly) is going to persist beyond Pred. It isn’t due to Adrenal deficiency alone, this assault by the immune system has taken its toll as well as the steroids. I wish doctors would tell you this at the outset. I have been brought low by disappointment. Good luck with whatever you do.

[Suffolklady in reply to SheffieldJane]

Thank you very much 💕

[bunnymom in reply to SheffieldJane]

This illness and medication is like nothing I've ever know.

[Purplecrow in reply to bunnymom]

Ditto!

[Viv54 in reply to SheffieldJane]

This is me ! So frustrating , jogging along trying your best , but feel like your treading water , im now down to 6 and staying there for a while ! i have to gain strength each time i drop down as found it really hard to cope with the fatigue ! Yes i agree i wonder just how much the pred has bashed my body. Good days bad days ! But i hope we will all get there , chin up . Best wishes Viv x

[Odosmum in reply to SheffieldJane]

I really do not understand why they want people on low dose pred to take Methotrexate. Now I know that I am dead set against the drug due to my experience of it for treating my Rheumatoid arthritis ( it didn't work), but I cannot see the benefit when low doses of pred (5mg and less) are doing the job.

[PMRpro Ambassador in reply to Odosmum]

Exactly my point. If it is a physiological dose and the patient is feeling fine - what's to not like?

[Megams]

Hi Suffolklady - I swapped from Pred early 2015 when 1st diagnosed PMR. Pred ulcerated gut lining. No enteric Pred in NZ & PPI's made me nauseous.

Switched to hydrocortisone which I have made in acid resistant caps leaving gut alone

I am now at 10mg x 2 daily= 20mg. This is equivalent to 4mg Pred - I can not get below this amount without feeling dreadful all the time instead of feeling the pits some of the time.

Rheumy suggests keeping to the status quo reminding me that my daily dose safe long term - I'm assuming my adrenals kicked in long ago as been on the above dose most of this year.

Hope this helps a little..........

[Suffolklady in reply to Megams]

Thank you Megams. It seems that whatever you takes going to have consequences. My Endocrinologist said it’s closer to what the adrenal gland produces than pred but that not to say it’s going to be a breeze in the park taking it.

I will be on 20mg equivalent to about 5mg of pred which I’m on now it’s to be taken three times a day. I’m on PPI have been for years so my stomach usually tolerates tablets. I was hoping that reducing would be easier I was led to believe this but maybe it’s not the case. Thanks for your experience it’s very helpful.

[PMRpro Ambassador in reply to Suffolklady]

It may make well reducing easier if it is adrenal function that is the limiting factor. It won't if it is the PMR.

[Suffolklady in reply to PMRpro]

Well I’m hoping PMR, I’m only going to know that when I am on it. Hope I can tolerate it . It’s easy to blame all pain on PMR with what I have, my PMR manifested its self in the tops of my arms totally eradicated in hours of preds. My Rhuemotologist had scans/ultrasound done on these muscles and I have moderate tendinitis as well. If I get a twinge it’s hard to establish what’s causing it but it’s nothing like three years ago when I started my PMR journey that’s was debilitating to say the least.

[Viv54 in reply to Suffolklady]

Hated the Tendinitis , took me a while to link it with the Pred It was totally crippling . The Dr finally admitted that it may be the Pred . But i really had to point it out to her, im afraid Drs really dont have a clue . The lower i got on Pred the less pain.

[PMRpro Ambassador]

It really depends on whether the problem is adrenals or the PMR returning doesn't it?

One lady had got to 2mg and felt fine - but her doctor did a synacthen test as a standard procedure and it was found she had no adrenal function in response to the stimulation. Obviously that is a problem so she was switched to HC - but found the adverse effects too unpleasant and asked to be put back to pred and did fine. That is a slightly different situation, she needs the HC as a replacement therapy rather than it being used to try to stimulate a return of adrenal function.

Like with pred - everyone is different. The only way to find out is to try it.

[powerwalk]

Is it the fatigue you find bad? Do you have any pain? I ask because I would be at the same level, had to increase to 5 but even at that still have no quality of life. I cannot see me ever getting off this stuff. I cannot get rheumy appointment til end of January and to be honest I don't know if it will do me more harm than good as if he pushes me to reduce I don't know what will happen! Very interested to see what option you go with.

[Suffolklady in reply to powerwalk]

I have minimal pain from PMR if any at all but I do have pain from other conditions back, neck but that’s not due to PMR I had that most of my life. Yes, when I first went on Pred I felt wonderful full of energy PMR pain disappeared along with a lot of my other pains...great! However as I reduced besides all the other problem I got, I had pain but not PMR now I’m at the stage I want off it to try and see where I’m at with other medications. My mind is so confused most times I forget from one minute to the next, I can’t even talk properly as my words come out all muddled and wrong so if I can get off pred then maybe in time this brain fog will lift. It’s a different option for me whether it’s right or wrong I don’t know but if I can get off of steroids then I can see where I am and maybe get a bit of my life back because at the moment I don’t have one. I got my emergency pack from the hospital yesterday and hopefully get my hydrocortisone tablets early next week plus I’m getting a test in a months time ( first test I’ve had). It’s a different step whether it works out or not I don’t know but it’s worth a try.

[powerwalk in reply to Suffolklady]

Yes i remember now you saying about the other pain, like myself, a big piece of pain ! I hope you get some help with all this. Fingers crossed for you.

[Megams in reply to Suffolklady]

~I really don't want to rock your boat any further but I have constant brain fog when I'm down with virus (seems fairly often lately) & can absolutely vouch for muddled memory in what I was thinking 2 seconds ago.......

As for trying to articulate correct words the right way round in a sentence!! Concerns me at times as stickler speaking English language the way it should be spoken.

I've learn't to be kinder & gentler on myself otherwise I want to weep.

Steroids have certainly added to this but ageing big part of process (I'm reminded by GP & Rheumie despite convenience of saying as such), along with side effects of other meds no doubt being factored into equation.

I wouldn't be without my HC because I appear to have developed other inflammatory issues along the way - its a matter of weighting up all the pros & cons & juggling many balls at same time.

Sorry to add more fuel to the fire - good luck with big hugs ~

[SheffieldJane in reply to Suffolklady]

The muddle headedness, that you describe so well, was me with untreated PMR. As presentations were part of my job, it was horrendous. Now I forget the names of actors, films, politicians, mid conversation but it is not the awful brain fog from before, where I could hardly form a sentence and would look blankly at an encouraging face and nothing would come out.

I am in London with my husband who is here for a conference. The train journey ( unremarkable) but uncomfortable, exhausted me so much and filled me with such back and leg pain that I felt unable to go for the special meal he’d planned. I took one extra mg of Prednisalone as an experiment and within 20 minutes, I was able to tidy myself up and go. I know I am trying to reduce my dose before I see my Rheumatologist ( one of the best) but it’s just daft. All she can suggest is Methotrexate and I dread it.

[Suffolklady in reply to SheffieldJane]

In a way it’s a relief to know that this muddled head is something I’m not alone with. I know I’m not a great conversationalist even before if I have a queue to talk in a group I’d be tongue tied but that’s me, as much as I’d like to be fluent and confident I never was but to not remember, as you say, names of people tv programmes that are so familiar is total bizarre, annoying and embarrassing.

I’m glad you were able to enjoy your special meal. It’s tiresome when that happens to you. Prednisolone has never effected me in the way you explained although pain was an issue initially it wasn’t debilitating enough for me to use it this way. I have alternative pain relief that works well. That’s why I think I’m ready to come off of it. Next move hydrocortisone . I don’t know enough about methotrexate only a friend has it for RA and suffered from its side effects. Hope it goes the right way for you.

[Suffolklady]

Bless you Megams! I know things are not going to be a doddle because I’m changing meds it might go horribly wrong but I have to be positive.

[SheffieldJane]

Let us know how you get on please. X