Nervous changing from Prednisolone to Hydrocortisone

[Suffolklady]

I have been on prednisolone for about 6 years and was down to 4.5mg but not feeling great with general pain so upped it to 5mg. Adrenal gland isn’t working so I doubt if I can get off steroids entirely anytime soon. Anyway spoke to my Endocrinologist the other day and we discussed trying Hydrocortisone as an alternative to see if I felt any better in my general well, health which isn’t great. This weekend I’m going to go on the other drug but am very apprehensive and nervous not sure how to do the change and organise the three doses I have to take. Will it still control pain and can the dose be upped in crisis or illness and to what degree? Will I notice the difference? Anyone with a word of wisdom I’d be grateful of your input.

[SnazzyD]

Are they concentrating solely on your adrenal function? If so, that would explain the hydrocortisone. However, if your pain is PMR then really you need Pred as it doesn’t leave the system so quickly and is more potent. My adrenal function wasn’t great at 4mg but slow reducing at 0.5mg over anything from 8-14 weeks made my Synacthen test much better at 1.5mg. I had to be really slow or else I felt very ill. I have fluey general aches and pains but not bad pain. My Endo wasn’t unduly worried, saying I just needed to slowly get lower because of course 4 and above mg is going to make have a suppressed adrenal gland. I am concerned about your pain though and perhaps Hydrocortisone isn’t the best option for that right now. Where is your Rheumy/Dr on this?

[Suffolklady in reply to SnazzyD]

Initially I was taking them for PMR reducing and getting stuck at 7.5 for a long time. I’m not in the best of health with skeletal issues and muscle pain generally ( scoliosis and two ops) so it was always difficult to say if the PMR has gone. The arm pain which was the initial trigger went within hours of Pred (15mg) so it was speculated I had PMR and I was treated as such by my Rheumatologist for about 3 years. Then I was transferred to Endocrinology for synathen test ages ago and also discovered my thyroid wasn’t stable. That’s another story. At this point my Rheumatologist left about 3 1/2 years ago. I was supported by my Endocrinologist consultant and still am. However I did get an dreadful pig headed Rheumatologist as a replacement he said I don’t think you have it PMR now and I can not comment on your case as I haven’t seen you from the start. Your notes on the case I can not comment on either as it’s from a previous colleague it wouldn’t be fair to expect me to judge your condition! He wanted me down to 3mg ( I was on 5 at the time) in three months when he’d see me again. He then left the hospital at some point as I never saw him again. Spoke to my Endocrinologist he was horrified and said no if your adrenal doesn’t start up you can be in trouble. So I went down to 4mg but ended up on 4.5mg for nearly a year. Then with the covid crisis I had a Nurse practitioner in the Endo dept who was amazing very supportive but I’m left without a Rheumatologist and have been since mid covid my GP has written a letter but it’s been months now chasing it up. So although my Endocrinologist who is a super old school chap is supporting me he only can within his expertise not on the condition side. I don’t feel well haven’t for a long time it might be the Pred I don’t know but it just a trial to see how I get on with hydrocortisone and I might feel better on it. Pain wise as I said the PMR might have subsided but my general pain is high and I expect Pred keeps it at bay but I was wondering if Hydrocortisone does attack the pain in the same way. Sorry about the long dialogue!

[SnazzyD in reply to Suffolklady]

Oh my goodness, that is an appalling state of affairs for you. I assumed it was largely a Covid induced mess but then you said Covid came along later in the story when it was already pretty bad!

I guess, as PMRPro suggested, you need to try the HC. If the pain is due to PMR that is still not done, it may show itself with this less potent, less persistent corticosteroid. At least if the pain gets worse it might give you more clues. If it doesn’t, that helps diagnosis. I hope your adrenals get the message. It took many months for mine to come back on line and then another 18 months to feel confident in most situations. I’m just saying that as it is easy for one to lose hope that it’ll ever happen sometimes.

[Suffolklady in reply to SnazzyD]

Yes a right mess all in all. The hospitals are in such a state so treatments are at a minimum . I was wondering if pain increases on hydrocortisone or I have illness does the sick day rule still apply and how it might work with the dosage. I’ll give it a try that’s all I can do. Thank you.

[SnazzyD in reply to Suffolklady]

You need to ask the prescriber but as with all steroids you need to have sick day rules. In case you are left adrift, try this advice leaflet

uhbristol.nhs.uk/media/4266...

[Suffolklady in reply to SnazzyD]

Thank you Snazzy that was incredibly informative. Getting to speak to consultants is a luxury and we never went in depth about it at the time so the info you gave was very useful.

[PMRpro Ambassador]

"Will it control the pain?" - difficult to say. If your problems are PMR then it is possible it WON'T control the inflammation as well. HC is not as strong an antiinflammatory as pred and has a far shorter halflife so it is out of your system far more quickly and sometimes the 3 doses per day doesn't control the symptoms particularly well. But you have to try it to find out.

You should be able to just switch to taking the HC, taking a dose in the morning. one afternoons and one evening and then see how you get on. Has he given you a higher dose than the direct equivalent?

[Suffolklady in reply to PMRpro]

Yes of course it’s not possible to say just trying to get an idea from others who might have changed over. It was explained about the three a day doses. Think the dose is 20mg per day. I’ll wait and see going to start it at the weekend.

[Hidden]

I’ve been on Pred for 10years but I’ve never been able to get under 7.5mg without feeling awful I’m under an Endocologist now and he just recently had me change to 30mg of Hydrocortisone 15-10-5 doses over the day, I had increasing body pain and after 2 weeks I decided to switch back to Pred I’m feeling better but still suffering from arm pain occasionally and feeling quite stressed out.

[PMRpro Ambassador in reply to Hidden]

But is the under 7.5mg awfulness a PMR problem or an adrenal problem? We have plenty of Long PMRers - most of us would be delighted to get to 7.5mg on our own!

[Hidden in reply to PMRpro]

Mental health problems anxiety, low mood, very stressy, disturbed sleep so it’s always put down to adrenal problems.

Rheumatologist binned me and now under endocologist.

Just giving my experience on the change from Pred to Hydro.

[PMRpro Ambassador in reply to Hidden]

But problems also exaccerbated by PMR - I had them through the 5 years of PMR with no pred which is why I often say that things should always be put down to pred or adrenals. PMR can be the cause of a lot of things they don't usually associate with it.

[Suffolklady in reply to Hidden]

Oh dear, thanks for your thoughts it’s good to hear what people think good or bad.

[powerwalk]

Just want to wish you good luck with this. I hope you get relief. I've often thought about changing, ive been told my adrenals are highly unlikely to come back, buf i have so much pain im not sure it would suit me. The endo just said to keep taking the pred. Let us know how you get on.

[Suffolklady in reply to powerwalk]

Thank you Powerwalk. I don’t know if it will be better or not the pain I have is rampant at time but I have occipital head pain so often headaches shoulder and neck and this gets me down which is a vicious circle. Along with tiredness non motivation it’s a mixture of just feeling rubbish all the time. One task can wipe me out is it Pred I don’t know, is it results of PMR who knows or perhaps it’s the way I am. I just know at 64 it’s hard to think of my future where it’s a battle every day and a long road ahead if hydrocortisone changes the way I feel I’d be over the moon but I’m not holding my breath. The chances are slim.

[powerwalk in reply to Suffolklady]

Oh i hear all that!! And share most of it!! Really hope you get some relief from a new med. Fingers crossed.

[OPO4]

I was changed from prednisone to hydrocortisone because I also have Addisons Disease. I have been told to , and do double dose for 3 days when I feel I’ll.

[Suffolklady in reply to OPO4]

Thank you very much OPO4 so the same as Pred I doubled up for a couple of days. How you feeling on it? Is there a noticeable difference in a good or bad way?

[OPO4 in reply to Suffolklady]

After one day on double,I feel good, not tired and not sick and not much pain. It gets better day 2and3. It feels like a fix my body needs.

[HeronNS]

Fyi, here is a table of dose equivalents for the various corticosteroids.

If you have to log in, it's a free account:

emedicine.medscape.com/arti...?

[Boomerang4]

I was diagnosed with PMR and Adrenal Insufficiency last year. Catch 22. Been on pred. since and got down to 8mg but in trying to do so suffered from depression. My doctor suggested seeing an Endo. He put me on Hydrocortisone . First week was great - no depression and not so tired. Second week it all fell apart - acute neck and shoulder pain , hearing suffered ( felt like my ears were blocked) , acute pain in back and legs and depression started . I have unofficially returned to pred. but am trying to talk to my doctor. I was warned that the PMR might flare. I am feeling much better back on pred. but this is me and it might have a different effect on someone else.

[powerwalk]

Suffolklady, did you try the hydrocortisone instead of the pred? Just wondering how you were getting on with it? Hope you're doing ok.

[Suffolklady in reply to powerwalk]

Hi powerwalk, yes am still on the hydrocortisone started on 2nd September. Drawback remembering to take them three times a day and often forget then think ‘shoot’ I’m late again but I don’t feel ill when that happens. As for adrenal function not sure if it’s helping to kick start it or not. Do I feel any better on them the jury is still out on that one. The main drawback is that it doesn’t control the pain like prednisolone does, I’m thinking that PMR might not be an issue now although I do have a painful upper arm muscle but I do use crutches hips and lower back pain but I had spinal fusion in the past so it’s not easy to pin point what is what. I feel pain in most places tbh and Pred did mask pain better and hydrocortisone doesn’t. So more pain! I’m in two minds whether there is an advantage to it or not. My Endo consultant seems to think I’d be on low steroid permanently. Did get referred back to the rheumatologist last week checked me for fibromyalgia and had a good chat, had bloods done at GP and awaiting a MRI scan on shoulders and neck at the hospital. Then we go from there. If it is considered to be fibromyalgia then it’s a pain clinic issue not rheumatology which is a problem as our hospitals pain clinic has collapsed with no consultants.

I’m hoping someone on here has been through the same thing with hydrocortisone versus Prednisolone to chip in. Thanks for reaching out I kept meaning to add to my post with the progress.

[PMRpro Ambassador in reply to Suffolklady]

If you were better on pred - tell them you want to go back. The medical opinion these days is that there is little difference between pred and HC for managing adrenal insufficiency and if you are likely to be on it longterm you might as well ask for the one that gives YOU the best result.

endocrine-abstracts.org/ea/....

[Suffolklady in reply to PMRpro]

Yes there is no problem with going back on it the endocrine consultant is fine and leaves it up to me to decide. I’m putting it off as I didn’t feel great with the transition from Pred to hydrocortisone it took a while to settle but as you did mention before to me at least I have a steroid boost at intervals through the day where as it’s different with Pred.

[powerwalk in reply to Suffolklady]

At least it hasnt made you feel awful. Real minefield isnt it. I have fibro, trying to nagivigate it all like yourself is exhausting. Just had second lumbar surgery in 4 months so im a bit if a mess!! Hope you get some help with the pain management if you go. Thanks for reply, often wondered if i would chance changing as ive been told my adrenals are shot, but you never know whats the right thing to do. Mind you, no one has ever suggested it to me!!!

[Suffolklady in reply to powerwalk]

This fibro thing is all new to me I’m not really sure how they go about finding if I have it so it is bloods first but consultant doesn’t think any inflammation will show, then MRI scans. The steroids I’ve been on for 7 years+ on low dosage 5mg with suspected PMR initially so adrenals are not going to be happy if the function exists. As I was under the endocrinologist with thyroid issues adrenal was bought up and have had a massive support from him with steroids etc but of course somethings are out of his zone. Now after 3 years of messing around without a rheumatologist I have got one. Now I have more support but only if it’s PMR or steroid control not fibromyalgia. How do you feel with fibromyalgia? What treatments are there if any?

[PMRpro Ambassador in reply to Suffolklady]

If the pain goes away with more pred it is very unlikely to be fibro - though no reason why you can't have both unfortunately!

[powerwalk in reply to Suffolklady]

The fibro is bad fatigue and at times unrelenting muscle pain. I had that before pmr. I manage with mostly over the counter painkillers. No blood tests, etc., will show it. They do use other meds, trial and error really but i couldnt take them, im not good with side effects but some people can take them. Do let us know how you get on.

[Suffolklady in reply to powerwalk]

Thank you for the info. I will let you know with the progress.

[HeronNS]

I saw this thread because at some point I put a reply in it. Maybe write a new post (you can refer people to this one if you don't want to repeat the whole story) but a new post would reach new people.

[Suffolklady in reply to HeronNS]

Good point