Ending prednisone

[Purplecrow]

I’ve decided to drop current dose of Pred from 5 to 2.5 mg. After a week or so,…I intend to stop pred totally.

I started pred in 2013, After 10 + years on the drug, and 5 mg for past year, I don’t think there will be too many negative consequences if I stop taking it, using a quick taper and end.

Last week, I had cervical spine surgery, and for the next while, I will be using some powerful narcotic pain drugs. It seems reasonable that the narcotics will control the withdrawal pain, and I might get to end prednisone while I recover from the surgery. Feels like a delicate dance, but I’m experienced with symptoms and issues with prednisone, having been on a very low dose for so many years, and I think this might work.

those of you who have years of experience, similar to mine, please weigh in on my plan….

I’ll keep you posted.😁

[pegpowell]

5 mgs is not low compared to a slow 1/2 mg drop to 0 to let your adrenals become re-activated. Once getting to 0 slowly, it sometimes takes up to a year for adrenals to become completely functional. I reduced by 1/4 mgs towards the end. It has been almost a year with no pred (since January) after taking it for 7 years for me.

[DorsetLady PMRGCAuk volunteer]

After 10 + years on the drug, and 5 mg for past year, I don’t think there will be too many negative consequences if I stop taking it, using a quick taper and end.

I shouldn’t be too sure about that.. you could risk adrenal insufficiency and make yourself very ill. Think you need to rethink your strategy.

[SnazzyD]

I don’t think withdrawal pain is the main consideration. Autoimmune activity aside, your adrenal function may well not be ready to take up the work after a 50% in dose. 5mg is low compared to say 15mg but still significant enough to suppress adrenal function to some extent according to my Endocrinologist. If you insist on doing this and seem to feel ok, make absolutely sure you have Pred with you at all times in case of an adrenal crisis which can kick in after a relatively small extra effort for your body which is already dealing with the surgery. Reliable function took me over a year to achieve even after spending a year around 1mg. Have you discussed this with your doctor?

[piglette]

It is not the pain of withdrawal that will be the problem if you reduced so quickly. It will be the fact that your adrenal glands will not be able to cope with such a fast reduction. You could make yourself very ill.

[PMRpro Ambassador]

Five mgs is enough to be still suppressing production of cortisol. If you stop your pred over a period of a few weeks, you are putting yourself at a very high risk of developing an adrenal crisis which could make you very very sick requiring hospitalisation and could even be fatal.

At the very least, get a synacthen test done before you cut the dose to 2,5mg and then after a few weeks at 2,5mg. Please discuss it with your doctor. Stopping like that from 5mg after a few MONTHS would be dodgy, doing it after 10 years on pred is risking a lot.

[HeronNS]

I agree with the others. During my final descent into zero territory I went extremely slowly. Having been bitten once by a brief unsuccessful flirtation with zero after a year-long taper from 2, I just let my body decree whether I was ready to take another step down. Have never actually looked to see how long that final stage took, but it was many months, maybe well over a year. Even at that I still suffer from fatigue and have little stamina. If I were you, I wouldn't dream of a rapid drop from 5 via 2.5 to zero. Even if PMR is in remission, and you can't know that if you're still on 5. you'll suffer from losing the cortisol top up.

(Me - started pred June 2015, last dose Feb 2024, but *most* of those years after the first two I was at a dose of no more than 2 and sometimes less)

[yogabonnie]

I hope your spine surgery is a huge success!!!! and the drugs help with the pain. and you will feel much much better soon. As for the PMR and prednisone drop I am right in there with HeronNS and the others... listen to them or at the very least talk to you doctor. you are risking playing havoc with your adrenal glands. I know how you feel about this damn prednisone I have been on for 10 years and just FAILED again to get below 2mg. so back to 2mg. after having to go up to 3 and slowly down again to 2. I intend to stay at 2 for 6 months or so until I try once more.

[Bcol]

Have to agree with the others, 5.0mh to 2.5mg tp 0.0mg is a extremely risky move and as well as possibly making you very unwell could end up with you taking even more Pred to get it sorted. Hopefully the back surgery went well. 🫂

[marionofnorwich]

I am not one of the experts but that sounds dangerous to me. Having surgery might / will require more pred not less. If your adrenal glands are not working normally you could have an adrenal crisis although I guess as you are a,ready in recovery but my gut feeling is that it is not the right time to take that risk. You need all your resources to recover. Good luck!

[ImC_]

I’ve been on Pred for 4 years, so can’t match your 10 but it’s long enough. Below 5 is when most care is needed. Experts have already pointed out the adrenal crisis you’d risk. I can’t help wondering why you had a year at 5mg without (I infer) any attempt at a slow taper to 4.5 but now want to make such a massive jump. I’m at 2.5 ; the fatigue has to be carefully managed. Due to the blood testing cyber attacks I couldn’t have a basal cortisol test but lining one up now before I go any lower. I’m not a worrier, generally, but I feel very cautious about even a 0.5 mg reduction at this stage.

[cranberryt]

usually you need MORE prednisone when you have surgery because yoyr adrenals are surpressed and cannot respond to the surgery. As PMRPro said… adrenal crisis can be fatal. Contact your doctor and your surgeon. They have protocols to follow.

[Wizards]

I was on prednisone for 8+ years. I've been off since January 2023.I can tell you only my experience. At 5mg I could tell my adrenals were having problems, I thought then I was exhausted but what a joke compared to when I got down to 2mg.

At 2mg my rhumitologist test and I was at 25 low normal is 100.

My Endicronologist then saw me and wanted me off. I never once yoyo'd and I didn't reducing to 0 but as I wrote my sister I felt like I was dying.

I was in crisis and I literally could barley move or do anything.

If I was to do it again I'd go to 4 mg and stay for a year to let my adrenals catch up.

I didn't start to feel better, meaning I could walk till the end of February.

I'm just now feeling like I'm getting some of my energy back and that's 18 mos off.

I should never have listened to Endicronologist and more my instinct but you can taste the end and I could feel the pmr was gone. However your adrenals can literally be deadly as my rhumitologist yelled at me over the phone saying I could be dead.

You've been on a long time what's a little longer.

I'm in Canada

[BarbB]

Surgery and recovery is a major stress, after which people with healthy functional adrenal glands put out MORE cortisol than usual to cope. If your adrenals are suppressed and in addition you cut your prednisone dose immediately afterwards you may not heal properly and you may have difficulty with pain control.

I had a friend who had been on 5 mg pred for Lupus for years who needed back surgery. Her surgeon had her do a cortisol stim test to see if her adrenals had been suppressed too much to be able to respond to the greater need for cortisol in the post-surgical period. If so, he was planning to INCREASE her dose of pred for a while. Fortunately for her, her adrenal glands were still responsive and she didn’t need that.

You really don’t want to risk experiencing adrenal insufficiency after a major surgery.

[KASHMIRI1]

Sorry this is a bit late but I wanted to say I am waiting for spinal surgery and have been told that they will most likely increase steroids before ,during and after surgery. Take care with that speedy reduction you could become seriously ill