I’m looking for some information and advice. Just a quick synopsis of my history. I started with PMR when holidaying in Madeira in December 2015. My hands ached to such an extent that I didn’t know what to do with them! From there things got worse, neck, shoulders, hips, back, feet, I thought that my arthritis was getting much worse, but it wasn’t until I went to my GP in about the May or June that I got the suspected diagnosis and was put on Pred from the start. I was under various Rheumatologists over the years, all very helpful and approachable, but I was very up and down with my Pred. I was then passed on to the endocrinologist clinic nearly two years ago because, it would appear that my adrenal glands had shut down! Unfortunately I didn’t have a very good rapport with the endocrinologist and came out feeling very confused. I am at last getting to the point. He wanted me to have another Synacthen test,( I had had one previously, but my Pred was too high and it was inconclusive ). He said if I could get down to 5mg a day he would suggest that I changed to Hydrocortisone, 10mg morning, 5mg lunch time and 5mg in the evening. Although I wanted to come off Prednisolone, I was very nervous of trying something new. He was not very pleased I must say. Since seeing him twelve months ago, I have really tried hard to get my Pred down. Before lockdown I was determined to wean myself off the Pred, I got down 1.5mg and felt absolutely dreadful and went up to 5mg for a few weeks, and I am now on 4mg. I am due to see ‘the man’ this coming Tuesday and desperately need your advise and information about Hydrocortisone. Thank you.
Need help and info about Hydrocortisone. - PMRGCAuk
Need help and info about Hydrocortisone.
Hello! Sorry to launch with questions but here we go. What dose were you when your adrenals were pronounced shut down? How is your PMR symptom control in all this? When you say you felt dreadful at the lower doses, what do you mean? What has your reducing schedule been from 5mg?
Hi SnazzyD, thank you so much for your prompt reply. I cannot remember what preds I was on when my adrenals were first mentioned in a letter to my doctor, at that point I was on 7mg. My last rheumy said that my PMR was clear, which is why I was transferred to the endocrinologist, but I was still suffering the same symptoms, albeit not anything like as bad as my PMR at its worst. My method of reducing Pred is to reduce by 0.5 every 3or4 weeks. I managed to get down to 1.5mg during lockdown, I’m sure I wouldn’t have managed it if life had been normal. By then I was feeling so poorly, pain and acute fatigue. On my doctors advice I went back up to 5mg ( I’m now on 4mg) And whilst I feel better than I did, my main problem is still awful fatigue. I gauge how I am doing by how I manage to walk up the stairs, or should I say pull myself up the stairs! Also lifting my arms to do my hair can be a problem. I hope I have managed to answer your questions clearly, if not, please let me know. Thank you again.
"My last rheumy said that my PMR was clear, " - what was that supposed to mean? If you were still on pred he couldn't know it was gone, if that was what he meant - only that the amount of pred you were/are on was/is enough to manage the inflammation. The fatigue could be poor adrenal function - but in combination with lifting your arms being difficult it could equally well be the PMR not being controlled. I use the stairs as an assessment too - and a couple of mg more or less makes a massive difference to me.
Hello again. Well, the rheumy may think he has superpowers (not the first) but the only way to find out if PMR is in remission is to have no steroid at all in the system for a number of weeks. 7mg is still plenty to keep some inflammation suppressed. Blood tests for inflammatory markers aren’t a good guide either because they too are kept down by Pred. For the doc to say you have no PMR when you have symptoms is confusing, but again it is not uncommon for this approach- look at the calendar, look at the numbers and decide what should be the case instead of what’s in front of them.
7mg is a funny level where there is enough to keep the adrenals mostly asleep but too much still for them to feel they have to wake up. Many feel pretty rough at this time and the trick is to work out what is PMR revving up and what is adrenal insufficiency. The dose is still too high for a Synacthen test to be meaningful. I just had GCA and I felt shocking until I got to about 5mg, but still I had periods of feeling incapable. Many report this “deadly fatigue”, as it is said. The only thing for it was to do very little and take life not even in the slow lane, but in the escape lane. I felt fluey, acutely tired, emotional, shakey at times, nauseated at times and I could no longer get up in the mornings. The naps I was beginning to shorten went up to an hour+ again. Remember that at 5 years you are on the median time of duration for this condition, not the maximum.
Due to this precarious energy situation my reduction was 0.5mg every 6-8 weeks and the lower I got the slower I got. Under 3mg it was every 10-14 weeks. That was plenty; life was still a struggle at times. The Endo’s said 0.5mg every month but I reminded them that I felt dreadful doing that and I had a home life to cope with. So they had to put up with it; another one of those nutty patients who think they know what is what. Some patients are put on 5mg for months to settle before carrying on down. In any case, symptomatically you are still showing signs in your arms that the PMR is still going. Sounds like your doc is sensible an not afraid to deal with what is. Perhaps suggest to your doc that you go to a level you were comfortable at (5mg?), hold until your pain is stable and then reduce very slowly indeed. My GP booked my Synacthen for when I was 4mg so perhaps you make enquiries to that effect for later. In the meantime take it very easy.
Hi SnazzyD. You say that you just had GCA, I think that that is quite enough to contend with. A neighbour of ours had ‘just’ GCA and he was very poorly for quite a long time so I really sympathise with you. I had symptoms early on and I was terrified at the thought that I may have it too, fortunately I didn’t. Our neighbour is now fit and well by the way.
I am anxious to have the synacthen test and try and move on so I’ve decided I will change to hydrocortisone, so wish me luck and thank you for your help.
Thanks for that.
Do please take note of what PMRPro says in the fact that you have trouble getting your arms above the head is likely your autoimmune activity is not done. Having a flare due to rushing off Pred now you’ve got this far would be tragic. You may not be ready PMRwise to be covered by a shorter acting cortisone so keep an open and honest eye on yourself.
We all want to get back to normal, but usually normal has changed and has to be discovered and adapted to in time. The difficult bit is not knowing what that is and you really cannot rush this bit. Good luck with it.
I’ve taken on board what you have said. Thank you again SnazzyD.
Both pred and hydrocortisone are corticosteroids so have many of the same effects. The reason for using hydrocortisone instead of pred is because it has a much shorter duration of effect than pred and as a result mimics the natural production of cortisol by the adrenal glands. That means the adrenal glands are poked a bit harder to get back to work. Being on HC instead of pred may be enough to get the adrenal glands to wake up. But the short period of action means that you need to take it more often. However, even a short period of taking HC before the synacthen test gives a more reliable result for the test as to whether the adrenal gland is CAPABLE of producing cortisol.
Some people do fine on HC - one lady on here uses it to manage her PMR because she can't take pred. Others don't get on well with HC and have switched back to pred.
If you can answer Snazzy's question we may be able to explain more.
Thank you PMRpro, I only wish the endo. had explained all that to me as clearly as you have and I may have been happier to change over. Do you know what the possible side effects are? I hope you don’t mind me mentioning something else that really distresses me. When I began taking the preds, I had the moon face and put on weight around my middle, I know this is quite common and whilst my face has almost gone back to normal, I am left with the most strange shape around my middle. I have always been slim and find it most distressing that I cannot get into any of my clothes. I am careful what I eat and whilst I have lost a little of my weight, it has come off my arms and legs which are now painfully thin. My BMI is still 21.something. I have never looked like this since I was pregnant! I must say that I am a little nervous about meeting up with consultant on Tuesday, he lacks empathy I’m afraid. Thank you again for your informative and prompt reply.
I know - I think too many doctors assume the patient will accept their arguments when they do what they always do but there is also the point they themselves don't know how to explain things simply or think they have but it is as clear as mud!
When I started low carb, the first place the fat came off was around my midriff - I didn't notice it until the trousers I had with me as an alternative for my daughter's wedding almost fell down!!! But you are obviously very lightly built so don't need to lose weight in general. Although you say you are being careful what you eat - you may just be eating more carbs than you get away with to lose fat.
The adverse effects of HC are the same as any corticosteroid - but like any new medication, different people experience different problems. Some people don't have any, others are simply unhappy but you can't know until you try.
Thank you again for your good advice. Do I gather that my weight gain is nothing to do with the preds. I have read that they give you a good appetite causing you to eat more, but to be honest they didn’t encourage me to eat any more than normal but I still ended up with this horrible uncomfortable ‘lump’ , which I cannot get rid of. Yes, I will cut down on my carbs even more and see if I can do better.
Knowing what I now know about the Hydrocortisone, I think that I will go with it, I can always go back to the preds if needs be. Wish me luck with my telephone consultation on Tuesday, and thank you again for all your help, I do appreciate it.
Oh yes - it is almost certainly pred related - it makes the body store excess glucose as fat in specific places: around the face, on the back of your neck and around your midriff. Cutting carbs is a very good way to get rid of fat deposits because low carb makes the body use up the fat.
Wow, your reply brought a smile to my face and I’m now even more determined to cut the carbs and lose it, especially as I’m changing to the hydrocortisone. I suddenly have renewed optimism!
No guarantees, and it may not be 100% - but it works for a lot of us. If you don't try, you won't know.
BMI doesn’t quite work on Pred because some of the weight loss will be muscle loss because Pred increases this. I went very low carb and high protein with normal fats. Even when on less than 1mg my fat was in that funny middle bit, and when off Pred for 4 weeks it went. However, I do wonder if body changes after dose dropping are delayed and I was starting some very mild core strength exercises.
My Endocrinologist wanted me to shift to Hydrocortisone 25 mgs when I was on 5 mgs of Pred. My PMR still felt very active. I believe that Hydrocortisone behaves more like our own production of Cortisol in that there are gaps, you take it 3 times a day. It has a shorter shelf life than PMR but it does allow your own Adrenal glands to be stimulated by the lack of outside Cortisol. I do not think that is very effective with PMR pain and stiffness though. I refused it in spite of having failed a Synacthen Test. Once I dropped to 3 mgs of Pred my subsequent Synacthen Test showed the potential to work. I still have a cortisone injection kit for a potential Adrenal crisis. Unlike your man, mine was charm itself. Their perspective on our disease is different. My Rheumatologist was on my side about sticking with Pred. I felt pretty conflicted. My PMR seems to have gone into remission with Tocilizumab help. Unless finding ankle boots with a low block heel a challenge is PMR. More due to lockdown I think - like a toddler’s early steps. It’s your body be firm.
Thank you for sharing your experiences SheffieldJane, and for your information. Having weighed everything up, including the fact that I really must lose my horrible stomach, I’ve decided to switch to hydrocortisone. I feel I must give it a try, and I suppose I can always go back to preds if needs be. It will also please my endo,., who wasn’t very pleased with me for saying no thank you when I saw him 12 months ago. Please wish me luck.
The article by Dr Sara Muller in the Spring edition of PMRGCAuk NewsWire is worth reading. She refers to the work of Borresen in Denmark and the similarity of PMR symptoms and those of adrenal insufficiency. Although not mentioned in this article it does seem that due to the shorter half life of hydrocortisone the steroid levels may be low enough during the night to stimulate more ACTH production and hence stimulate the adrenals sufficiently to bring them back to “life”. It seems to me that hydrocortisone gives much greater flexibility in the treatment of symptoms than prednisolone especially as the smallest dose of pred is 1mg.
It is perfectly possible to adjust dose by 1/2mg down to 2mg by combining 5, 2.5 and 1mg tablets even without cutting tablets. Unfortunately, HC must be taken 3x daily to manage the inflammation and symptoms well - and multiple daily dosing is well known to reduce compliance. Taking pred at any time after midnight means the blood level of corticosteroid will be very low at midnight which is when it matters - OTOH, taking HC in the evening might not.
Thank you Tonylynn, I have received so much help on the forum, and now that I understand a little more about hydrocortisone, I feel that I can take a chance to move over from preds after all this time. Please wish me luck and thank you again.
This is a reply from purpleandwhite. I just wanted to thank you all for the help you have given me. I feel so much more upbeat about my problems now.
Good luck !🍀
Let us know how you get on.
I will and thank you again.
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