I have come off prednisolone gradually on a couple of occasions. The last time I had a synachen test and was put on a small dose of hydra cortisone 10mg as the results showed I wasn’t producing enough natural steroid.
After being on it for 2 years and feeling ok I wanted to revisit coming off steroids as I don’t want to be on them for life and I know your body can recover and make it’s own natural steroid and this won’t happen whilst you are on medication.
My consultant has swapped me again to prednisolone as there are not small enough doses of prednisolone and I am trying to reduce from 2mg every 3 months. Some more basic blood tests have shown my body is only producing a low level of natural steroid on its own and to my dismay I am shattered all the time.
I just wondered has anyone had any experience of their own adrenal system recovering? I was told that hydrocortisone is a more natural form than prednisolone by one consultant - but another just laughed and said a steroid is a steroid?
Just wondering if I’m wasting my time spending another 9 months struggling with fatigue only to be simply told to go back on a higher dose of steroids. My endocrinologist consultant seemed to struggle answering my questions.
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Katie18
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"I was told that hydrocortisone is a more natural form than prednisolone by one consultant - but another just laughed and said a steroid is a steroid?"
It depends how you look at it I suppose. HC is is structurally ALMOST the same as cortisol.
HC has a much shorter half life in the body (time for half the dose to be excreted) so using it is felt to be more like the natural pattern of cortisol secretion - a dollop in the morning to get you going for the day and another smaller dollop in the afternoon. You don't usually do that with pred as its effect lasts from 12 to 36 hours, once a day dosing is more convenient. Either way, you have some risk for not being able to cope with severe stress.
In between there isn't steroid floating around - so it is said there are fewer side effects. However - that depends on the person, some people have side effects with HC but don't with pred. It doesn't matter which of the range of steroids (there are several) you take, they have the potential for the same side effects.
Many people HAVE managed to get to lower doses than ever before using it. But even with this, if your adrenal glands aren't able to produce a decent amount of cortisol then you will get stuck somewhere. But it is impossible to tell whether your adrenal glands are simply resting on their laurels because they know there is some steroid around or because they simply can't do better.
Instead of worrying about being on a small dose of pred for life think about it as if it were a thyroid problem of diabetes - because in essence that is all it is: you are taking the pred for the same reason as someone has thyroxine tablets or insulin injections.
You do realise that adrenal insufficiency is potentially a life-threatening condition? If you were to experience really severe stress of any sort you could become very unwell with an adrenal crisis. In the meantime, as well as having that hanging over you, you are unable to function well enough to enjoy life. I have been on pred for 9 years - it doesn't bother me as much as it does the rheumy and it appears that my adrenal function isn't all it might be either. I also seem to suffer increased atrial fibrillation as I lower the dose. That's enough for me to be happy where I am.
Hi PMRpro thank you for that information that’s very useful.
I do realise that adrenal deficiency is serious but I also think that doctors seem to be reluctant to test for this or monitor your levels of cortisol produced naturally. I don’t want to stay on steroids in whatever form without at least giving my body the chance to recover & produce it’s own. However I’d like to be able to reduce in a controlled way which is monitored to make sure my levels don’t fall dangerously low. I left my endocrinologist with lots of questions that they seem unable to answer.
My GP has referred me back to them in 3 months as they thought my concerns about reducing over 9 months without any monitoring were valid. I also know that you are likely to feel tired when you reduce prednisolone whether you have adrenal deficiency or not so maybe it’s a question of being patient allowing your body to adapt? Hopefully I won’t have to wait too long Forbes my next appointment and I’ll be armed with questions and get some better answers.
I too have adrenal insufficiency. I have been down to 6.5 And became very ill. My prednisone was increased to 9 mg and it still did not do what I needed I had to go to 14 to start feeling human. I am now on 13 and feel pretty good. I am also still on Actemra. The 13 mg are not controlling the inflammation of GCA.
Are you aware of the recent study at Mayo clinic where they kept track of relapses in GCA and found that you need not have symptoms of the disease but the ESR above 29 was considered a full blown flare. I have never had the return of head pain but my blood markers go straight up when I stop Actemra. We have tried twice. There was a lot more info. If you like a will find the link and forward it.
Oh yes - that sounds interesting. I know that normal blood markers when on Actemra does not rule out the actual disease process being active - and I do have to say, that does concern me somewhat! Not from my point of view but because some doctors seem to assume that Actemra is the be-all and end-all...
It is a little scary to have a false negative. We thought that at 13 mg GCA would be taken care of the inflammation. After all it’s going on five years now. Before Actemra The lowest I think I got down to was 12 and then relapsepsed at 12. That was the lowest I think I got to several times. After starting Actemra two years ago I had an ESR of 2. I was disappointed when I found out I’m still at 13 for both GCA and my adrenals. Then again 13 is not doing it for GCA but instead of going up I went back onto the shots. It’s all very disheartening. This could mean both medications forever.
But if the Actemra hasn't made a significant difference - is there any point in continuing with it? Personally I'd take pred rather than Actemra - but then, I wouldn't get the option here. In fact - I suspect I may never get the option because of other things.
Other biologics are being trialed for GCA - perhaps it would be worth trying on eof them? And there are other cytomines (the inflammatory substances) that are touted as being involved in GCA besides IL-6 - if your GCA also involves a different one you might NEED a different one.
I am on 13 mg prednisone when I stopped the Actemra my ESR shot up to 27 and my CRP also went up dramatically in a week which means GCA was not under control with 13 mg of prednisone. If I stop the shots who knows what I will need in order to keep the inflammation under control. It is most difficult to determine what causes the body pain and fatigue whether it is the adrenals the steroids the GCA. I do find the joint paiin and body in general including headaches are somewhat better with Actemra. So far I am not aware of any other drugs available to me for the GCA. I am 76 and would like to live with as little pain as possible. I think I am tired of fighting. The roughest part this was not having a rheumatologist for such a long time that understood the disease. Between The PMR and GCA it’s been a difficult journey since 2011. This summer I endured 5 skin cancer surgeries to my face. Three around the left eye one of which was melanoma. A creation of prednisone I believe. I have in the past talked about the surgeries That I need but do not think I will have because of the adrenal issues and the inability to heal. Oh well. Off to Florida in two weeks. Had dinner with my daughter and shopped with my walker. No complaints here. Life is still good. 🤕🤕
Thank you Nap1 that does sound interesting. I’m pleased that you are feeling stable even if it does mean taking a low dose steroids. Feeling well is the main thing.
Hi Katie18. My experience has been that I did recover from steroid induced adrenal insufficiency. After 5 years on prednisone for both PMR and GCA, I spent 15 months bouncing around a dose of 5mg. or less and experiencing fatigue and some pains while my monthly blood tests for inflammation showed consistently low levels. I asked for a referral to an endocrinologist who switched me over to hydrocortisone for a month and then did a synacthen test which showed I had some adrenal response but at a rather low level. The endocrinologist suggested a slow taper to get off the hydrocortisone. That went well and I was able to stop it after about 2 months of tapering. That was 18 months ago. I continued to experience rather wide swings of energy and fatigue and sometimes localised pain in feet, knees or back for almost a year -- to the extent that I went back to the rheumatologist twice in that in that year for blood tests of inflammation factors. My levels remained low and I was advised it was probably pred withdrawal. Gradually my problems subsided and for the past 6 months I have felt like a normal person again and even have been able to do some mild strength training to try to restore muscle and balance. I hope you are able to get some answers and make some progress. I found it much easier to taper from hydrocortisone than from pred. The endocrinologist said it's shorter half-life in the body may help prod the adrenals to take up the slack.
Thank you cdrnoncourt that is really helpful and gives me some hope. My key concern is I don’t seem to be monitored whilst coming down. You were obviously very patient about coping with the fatigue and that probably helped you.
I would like to say my bit. I will not recover from Addison's Disease. I am on 7mg Pred, and only allowed to taper to 5mg and then stay there, permanently.My Endo is very clued up. I had GCA for 13 years. Last year, when I was on 2mg Pred, I had a synacthen test, and the results showed A.Disease. I fell apart. How could a healthy person, with NO FATIGUE,get a result like that? I had to come off Pred. drastically, which is not advised. Swithced to Hydrocortisone, and it was ROUGH. Stomach troubles. Eventually, after 3 months, I felt as though I was losing my mind, and refused to continue with them. Was put back on Pred, and near normality returned.
What will you do, if you come off steroids and get ill? The rule is to double the dose/get paramedic if vomiting/diarrhoea. I have so many other health issues, that I am content to be on 5mg for life. Wishing you the very best.
I have gpa and have been on pred for 3 1/2 years. I also have adrenal deficiancy. I take 7.5mg daily . I do struggle in the same way ie fatigue and just feeling very unwell especially in the afternoon or when i over do it. I have learnt my limitations.
I have just had my second synachen test and my adrenals are still not producing.
The endochrinologist told me the body needs 5 mg to function normally, but
When i tried to reduce i felt very dizzy and had a glucose drop. The endo wants me to reduce very slowly , i said how when you have only 1 2.5 and 5. She said ask the vasculitis team . They suggested take 5 and 2x1mg= 7 for a week then 2.5mg and 4×1mg =6.5 mg,then 5mg and 1mg=6, 2.5mg and 3x1mg = 5.5 and so on. I havent tried this yet.
Since my last test, they now want me to stay on the same dose 7.5 as normal for me.
I did ask about hydrocortisone but endo said no. Maybe it's the cost.
It is unlucky but I have learnt to live with it.
I will check out the sites pmr pro suggested. thanks
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