I was diagnosed with PMR on December 2015 and started on 20mg of Prednisone. I have side effects of raised ocular pressure, osteopaenia, cararacts and jaw bone loss due to 1 Aclasta infusion.
I am presently on 5 mg prednisone and am experiencing symptoms relating to low cortisone levels. I had a synacthen test six weeks ago which showed that my adrenal glands have not kicked in.
After discussion with my rheumatologist nurse specialist today, I agreed to start hydrocortisone, 15 mg in the morning and 5 mg at 1500hrs.
Has anyone have experience with this, or could offer some advice.
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NZShez
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I know the theory is that HC is better for persuading the adrenal glands to wake up (the halflife in the body is less) but one top rheumy likes to keep patients at 5mg pred for up to 9 months before continuing the reduction and it seems to work well just being patient.
I don't want to put ideas in your mind but one lady on the forum has been switched from pred to HC and is having horrid side effects. Theoretically they are both corticosteroids but I know from personal experience that while prednisolone and prednisone suit me well, methyl prednisolone was horrible. Not all steroids are equal.
I do hope the HC works well for you but if it doesn't I'd ask for a rethink.
Thanks PMRpro. As I have commented to the others, I am thinking of seeing an Endocrinologist if I don't feel any better.
I had Adrenal crisis a short while ago due to an acute illness and was given IV HC. I must say that I felt great while I was on it; but couldn't sleep! But then it was high dosage with 20 mg of pred.
I haven't made the switch yet as its a lot to think about.
I have a similar story, but had PMR and GCA for 5 years. During the 5th year, symptoms seem to be going away and monthly blood tests for inflammation were all low, so Rheumy and I decided on referral to endocrinologist. She did a blood test for cortisol and ACTH and switched me directly to the same hydrocortisone dosage as you for a month. I found I felt better under hydrocortisone than under prednisone. She explained that a synacthen test was unreliable while on prednisone because prednisone breaks down slowly in the body and rates vary, whereas hydrocortisone reliably disappeared from the body in about 4 hours (hence the afternoon dose). She said the body would therefore be challenged a bit more to recover adrenal function. After a month I had to omit the afternoon dose and the morning dose on the day of the synacthen test. The test showed my adrenals were capable of functioning. She then tapered me off the hydrocortisone. Her taper plan suggested 2 weeks, but I gave myself a month. I have been off steroids for 6 months now. I have some joint pains, but they are not the same as with PMR and my rheumy thinks it's from steroid withdrawal combined with osteoarthritis that never plagued me while I was on prednisone.
I hope you have a similar success (without the osteoarthritis, of course).
cdenoncourt. It was good to read that you have done so well on Hydrocortisone. I remember your previous post, and how much I was encouraged by it. My journey with HC is poles apart from yours.The Endo seems to think I may be on too high a dose, for these symptoms I am having. I am waiting for an appt, in the hospital day unit, to have hourly bloods, all day, to determine the right dose. Then, will have another synacthen test later on.
I hope NZShez will be encouraged by your experience, and not be DIScouraged by mine.
Thank you for your reply. I am still deciding on the switch. I think I can't decide because I know much about Pred and so little about HC. I have no idea of how to reduce when necessary; I don't have another appointment with my Rheumatologist until January. I will speak with the Pharmacist when I collect them.
I believe my endocrinologist said 4mg. HC is roughly equivalent to 1mg. pred so she put me on 15mg. HC (10 in the morning and 5 in mid-afternoon) to be replace the 4mg. pred I was on. But do talk to your pharmacist about that, don't trust my memory on that. 😉
NZShez, I DO so hope that your hydrocortisone experience will be like cdenoncourt's, and NOT like mine.
I had GCA for 12 years, and in May, this year, and having tapered, successfully to 2mg Pred, was feeling like my old self, esp. my mood.I had a synacthen test and my world fell apart! I have Addison's disease. 10mg HC am, 5 at lunch and 5 at 5pm.I am a wreck, like this morning, in the mornings. I start to feel ok-ish, in the evening. My stomach aches, and, now, recently, I have upper arm, shoulder, neck, flank pain. I have had 3 osteo appts, but had to stop due to cost. I am hoping to be able to have Bowen Therapy, eventually.
Twice, I have thought of going to A & E, BECAUSE i FELT 'OUT OF CONTROL'. I raged, air was blue and threw things about, shouting. When I was menstruating...am now 70..I used to have those feelings. Menopause 45 and felt wonderful..no depression/hot flushes.
Last week, I saw the Endocrinologist, after waiting 3 months. Unfortunately, the 1 who diagnosed me BY LETTER, was on holiday, so he didn't get the wrath of my tongue, but the substitute did! He told me to calm down. I told him he had taken my life away. He was a nice man. Said 20mg HC equal to 4mg Pred.When I was on 2mg Pred, the Endo told me I HAD to be off in 2 weeks.
Added to all this, he thinks I may have diabetes
. Went for blood test, and waiting for result.
Sorry for the rant. Hope things turn out WELL for you.
So sorry to hear of all your troubles. It does seem like the first endo should have put you on a lower dose of HC equivalent to the 2mg. of pred you were on. I hope you get some better help soon.
Interesting conversion of pred to HC. I was told that 15 HC in the morning and 5 HC in the evening would be equivalent to 5mg HC. I will ask the pharmacist.
If I don't feel any better after a while, I will ask to see an Endocrinologist. I am still being managed by rheumatology
Hi, please look at my note directed towards the steroid issue and psych issue. I am so understanding of the mess you feel. I have lost 4 jobs in 2 years, lost relationships and become reclusive due to prednisone. I have Addison’s and trying to get back on hydrocortisone which I felt ok on.
My name shows up as Swasey.
Hi. Personally, I am trying to switch back to hydrocortisone from prednisone as I feel mentally, the hydrocortisone is a better choice for me. The prednisone is prob more consistent per my endocrinologist but it is causing grave emotional issues for me since being on it staring 3 years ago. All in all, the hydrocortisone is more like our body rhythms and feel it causes less issues that the prednisone . My big worry is how to do that without fall out pain. My endocrinologist is not on board with this but I feel the need that I have to be to save my sanity. I have withdraw from society because of the prednisone, lost jobs and relationships due to behavioral issues since being on this medication.
I just switched yesterday but had gotten down to 1mg prednisone, my adrenal and pituitary are still not functioning but thought maybe they were as physically you usually can’t get that low. So she suggested we switch to Hydrocortisone, today is my first day with 1mg a day and must say I have never experienced this much pain, ever.
I’m sure all diseases are different but if you have a painful one like I do, I would ask if your can trade slowly as I’m not sure I can take the pain anymore and that’s after two 30mg morphine and OxyContin. Be careful prednisone you have to get off super super slowly and hope one day your glands start working again
Had you noticed this thread is over 6 years old and the most recent reply is over 3 years old?
However - if you have gone from 1mg pred to 1mg hydrocortisone, no wonder you are in pain. There is a 4:1 dose relationship between the two and if you were on 1mg pred, you need at least 4mg HC to get anything like the same effect and even then HC doesn't really work the same as its half life is far shorter and is out of your body quickly and the antiinflammatory effect is not only weaker but shorter.
Neither morphine nor oxycontin have the slightest effect on the pain of PMR. I think your doctor needs some refreshment on PMR and the use of pred. If you were OK on 1mg in terms of PMR, the best approach is simply patience. The return of adrenal function can take a LONG time, many months, not a few weeks, and you have to stick with it. 1mg is plenty low enough for things to happen - in time.
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