On since 2017. I am at 5 mg and really would like to be off as soon as possible. Also on Actrmra.
I am not happy with the advice of my endocrinologist. Can I just cut back 1 mg every 2 to 3 weeks Do I need to be at normal levels cortisol snd acth?
I I will be just fine without it. My primary care seems to think that is OK. My rheumatologist never wants to take responsibility for it and then I end up at an endocrinologist that I think wants to milk me. I need off and actemra works well for me. All input appreciated.🙏
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Aleish
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Hello Aleish. You don’t tell us what the conflicting advice is. Adrenal recovery can be slow and is best facilitated by a slow careful taper. Maybe half a one mg every 3 weeks and see how you go. The Endo is the specialism you need right now. Are you free of PMR symptoms? Lucky you if you are. The last lap can feel the hardest almost. An adrenaline crisis is pretty serious. Good luck!
on prednisone and was tapered to 2 mgs after 4 yrs but got covid 3/2020 and had to up to double digits. I use Actemra and will continue. It is just this discrepancy from docs. re labs. PC sees labs and has me coming off the way I want to, at least getting to 2 mgs. Endo milks it and I believe its about getting more time billed on me. I will never feel like a normal person because I fibro for 40 years. However I do feel better when I am on my Actemra. I cannot stand being on prednisone. It limits what I can eat. It keeps my pressure up. It keeps my blood sugar up. No grains no flowers no sugars.
Four years of this BS is enough to make you not really care if you live or die anyway😱 I am going on 78 . I do want to be around but no more prednisone.
It all depends on your body. Endocrinologically speaking 5mg was miles away from zero and I felt every 0.5mg dropped each 8-14 weeks (depending on dose and how I felt). 1mg every 2-3 weeks makes me balk but I’m not you. My endo said 1mg per month but they soon shut up after a couple of crises and my reports of crippling fatigue, unstable emotions and weakness the rest of the time. If your reduction is too fast you’ll soon find out; it’s not like PMR flares that can build slowly though it can creep up on you. Be aware that crises can pop up during a period of feeling ok during normal everyday routine, just from doing something different. What is it at 5mg that is so bad you just want off asap?
PC claims Cortisoland ACTH tests are not the clue because she said she will see it on my quartetly labs on other tests if lacking prednisone is an issue.
I will always have pain and that is no way to judge for me.
In a way they are right in that just because a Synacthen test looks ok, it doesn’t mean the glands will produce cortisol every time you need it, especially during acute or prolonged stress. But they do give some indication of potential. At 4mg it mine wasn’t special but reducing Pred triggered the adrenals enough to be much better by 1mg. However, it took a good while and feeling very under par to get there as in we’ll over a year. What I don’t get is if they are using quarterly tests to judge your adrenal function, it’s a bit late in the day if you’ve been having problems because they come on so quickly. Not sure what other tests they would look at, perhaps glucose, sodium and potassium? Poor function causes low sodium and glucose to go down, potassium to go up but this can happen quite quickly. Symptoms are a very good guide.
"I am not happy with the advice of my endocrinologist."
Unfortunately the endo is the expert at this stage of tapering off pred. At 5mg you are on enough pred to suppress the adrenal production of cortisol which is essential to life. The only way to get that back is slow tapering to allow the adrenal function to return to normal. If you go too fast you are at risk of an adrenal crisis and they can make you extremely ill and even kill if it isn't recognised and managed.
The Actemra will replace the pred for PMR, if you are lucky, it doesn't for about half of patients, but all it does in endocrinology terms is allow you to get to a lower dose of pred - and that is the mechanism for adrenal function to return. Your PC is wrong to some exent I fear - she might see derangement of other blood tests and symptoms in a slow onset of adrenal insufficiency but stopping pred quickly at this level would be the eqivalent of surgical removal of the adrenal glands.
Dad2Cue had been on pred for much longer than you but he did stop suddenly at 3mg, under the care of his endo I think, and he was OK. One option is to switch to hydrocortisone which is thought to stimulate the adrenal function better,
Hi Alesh, What exactly is the problem with pred, is that you don’t like the side effects or some other reason. I’m taking between 3mg -5mg each day and can’t honestly notice any difference. I stopped taking actemra as I didn’t like the side effects, according to my blood test I had fatty liver, I’m 47kg, hardly fitting with fatty liver, anyway I stopped taking actemra and liver returned to normal.
Can’t say with pred at 5mg or below its a problem, or is it some people have more problems than others.
I Agree taking high dose pred causes lots and lots of side effects.
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