Reducing prednisone to zero

[Plains]

I have been on Prednisone for over two years. I am currently taking 1 and a half Mg.

I believe the reason I have been able to reduce so low is due to the infusions of Actemra, which I started in October. For the last several months I had been reducing 1/2 mg of prednisone every three to four weeks.

I do not have body pain unless I do too much yard work. I always feel fine the next day. So all is normal in that area.

My question is, if I am feeling okay can I just keep reducing my prednisone every three / four weeks? I don’t want to have any adrenal issues.

[DorsetLady PMRGCAuk volunteer]

So long as you continue to feel okay then carry on -but slowly and maybe leaving a bit extra time in between tapers. So 4-5 weeks or use one of slower tapers we talk about on here -in the FAQs section.

If at any time you don’t feel okay then just “tread water” for a while until you feel okay to resume.

At such low dose there really is no rush -and there’s a lot of difference between 1.5mg and zero - in respect of your illness and your adrenals…

[Plains in reply to DorsetLady]

thank you!

[Amkoffee in reply to DorsetLady]

I'm confused about your last statement. I developed adrenal insufficiency from my pred use and I was under the impression that 5mg pred was equal to what our bodies produce naturally. So wouldn't that mean that Plains has past the point of AI and can taper as they have been assuming the PMR symptoms don't return?

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

Depends on individual-anything between equivalent of 5 to 10mg Pred -but you don’t know when YOUR adrenals will return to full function - it can take between 6 months to tear AFTER you have taken last dose of Pred. So no, Plains cannot be sure adrenals are 100%

see this from my post on adrenals -

WHAT HAPPENS WHEN YOU ARE ON STEROIDS

The body normally makes approximately 30mg of cortisol per day although that is not necessarily a constant level, measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.Once you have been on steroids for more than 2-3 weeks and at a dose higher than 7.5mg (which is roughly equivalent to the normal cortisol production by your Adrenals [does vary between 5-10mg for individuals] known as the physiological level they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena! Even on higher doses of Pred where perhaps you would not expect to feel fatigued or stressed you do, and that’s because you don’t get that extra “oomph.”

[Amkoffee in reply to DorsetLady]

It's really odd for me the way it came down because I had been off pred completely for 2 or 3 months before I started feeling so poorly. But I had an extremely stressful event happened which may have caused the adrenals to completely stop producing cortisol. That was in January of 2021 and now I have to take 25 mg of hydrocortisone in order to stay "normal." I have had two crisis since then and the first one I just doubled my dose and everything was great and that's because I developed a fever during covid. The second time however was so bad that I finally did some Googling and found out that pred takes longer to get into the blood stream but it lasts longer. Since I had some prednisone left over I took some of it and it helped me through the crisis more than hydrocortisone. I told my endocrinologist about this and he was glad that I had done just that. Of course I do have an injectable steroid should I need it but so far I haven't needed it because I've been able to keep the steroids down.

[SnazzyD]

You may not have any problems but if you do you’ll find out. If you do, it’s an easy fix. Go back to where it was ok and then reduce more slowly, say twice the length of time. You can tell because you feel tired for no good reason plus or minus the other add ons. Do have a read of the adrenals section in Mrs Nail’s FAQ’s on the right here. I would say though, always carry your Pred with you because your adrenal function may be ok for now but if you do anything unusual and it makes extra demands on your body and it can’t produce the extra required cortisol. You can have a collapse of sorts when you feel like someone has just found your off switch. You might need a swift mg or two and a long rest. I don’t mean that you feel a bit tired when you’re enjoying yourself somewhere and want a bit of extra pep to keep up your energy. I mean a sudden or growing feeling of really not having anything in the tank and possibly ill as well or worse still getting a deep feeling of doom.

You may find at your present rate your adrenal glands keep up with the increasing demand or cortisol. It would have floored me but this is a very individual thing but keep prepared for at least a year after stopping Pred.

[Plains in reply to SnazzyD]

thank you

[piglette]

That sounds like things are going well. At such a low dose I think I would give it four weeks between drops. The fact your adrenal glands have not complained about being woken up is good news. If they do start complaining STOP reducing and ideally just stay on that dose until things improve.

[PMRpro Ambassador]

Your doctor may be willing to do a basal cortisol test as a simple guide to the state of your adrenals - just a cortisol measured on a blood sample taken between 9am and lunchtime.

[Plains in reply to PMRpro]

thank you, I remember you mentioning this test on other posts. I will for sure ask!

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Mentioned in this link - from the FAQs section -

healthunlocked.com/pmrgcauk...

[Plains in reply to DorsetLady]

thank you so much for this. I remember see it a while ago, I now saved it.

[Sandidee]

I taper every 8 weeks by 1/2 a tablet and I am currently tacking 1 mg so my advice would be go slowly it doesn’t matter how long you take as long as you get there in the end.

[Denbo51]

I did exactly same and got to 1/half I just stopped it completely and feel fine,no more steroids pred

[Bachfugue]

If you’re having Actemra infusions, the decreasing dose can be different, and quicker than without it. There maybe other people here also taking it that can share their experiences.

[AnniesRyder5]

just wondering how was it decided to prescribe Actemra please?

[Plains in reply to AnniesRyder5]

hello, my Dr thought I could have GCA, while I did not have all the symptoms of it, he decided to start the Actemra. If you are in the US Medicare will pay for the infusions once a month. It has really helped everything. No more pain…. I will be in it for a year and then we will see how it goes. My fingers are crossed but realize I may have to stay in a low dose of prednisone.

[AnniesRyder5 in reply to Plains]

good luck👍

[PMRpro Ambassador in reply to AnniesRyder5]

Only an option in the UK for relapsing or resistent GCA and even then only for a year though that is supposed to be under review.

[AnniesRyder5 in reply to PMRpro]

thank you and that explains why we don’t hear a great deal about it 🥴

[PMRpro Ambassador in reply to AnniesRyder5]

Certainly not at the start or if you manage to taper pred reasonably well.

[AnniesRyder5 in reply to PMRpro]

thank you

I have my second rheumatologist appointment on Thursday (diagnosed in 2020)

I’ve tapered to 5mg after trying to settle at 4.5 but neither my body nor mind would tolerate it.

I can attribute reasons such as 5 months of medical interventions and last week a bout of flu. Joint pain and very low moods are my excuse for staying at 5mg.

A different consultant tells me I need a reverse shoulder replacement but it is a big op so just after Christmas I opted for pain relief via steroids in theatre which was a waste of money. Meanwhile waiting lists permitting I accept I need the shoulder op but in addition to that I have horrible pain in my right scapula and buttocks.

I’m actually nervous about relating this tale of woe to the rheumatologist because I usually do a good cover up. And hate to think I’m a wimp for not going the course.

Any advice would be much appreciated

[PMRpro Ambassador in reply to AnniesRyder5]

Being at 5mg after 3 years of GCA is a pretty good result, You aren't tapering relentlessly to zero, you are looking for the lowest effective dose for maintenance until the underlying cause of the GCA has burned out and gone into remission. I would say the bulk of GCA patients need pred for 4 to 6 years and this last stage is a question of balancing the antiinflammatory need for GCA/PMR symptoms and keeping the pred low enough to allow the return of adrenal function which must be established to get lower and lower.

What happens at 4.5mg? And any doctor who now attempts to introduce any other medication to "get you off pred" needs their head read - low dose pred is safer and better tolerated than the options.

[AnniesRyder5 in reply to PMRpro]

thank you and I do very much appreciate your positivity

[PMRpro Ambassador in reply to AnniesRyder5]

What are the symptoms when you go down to 4.5?

[AnniesRyder5 in reply to PMRpro]

very stiff in my legs, shoulder, and neck, general feeling of being unwell, tired and demotivated !

[PMRpro Ambassador in reply to AnniesRyder5]

That could be PMR symptoms being part of your GCA but also poor adrenal function can cause similar symptoms. In both cases, more pred sorts the symptoms out.

As for demotivation - join the club!

[AnniesRyder5 in reply to PMRpro]

I’ll let you know what the rheumatologist says

[Plains in reply to AnniesRyder5]

there another biologic drugs you can take like Actemra to help you reduce your prednisone. They are very costly in the US unless you have really good insurance. I have pretty good insurance but the cost to me woukd still be about 1,700 a month. The infusion of Actemra is only a 20.00 co pay.

[PMRpro Ambassador in reply to Plains]

Not in the UK!