prednisolone taper

[runcyclexcski]

I am sorry, folks, for another confused post. TLDR: how hard was it for you to taper to zero prednisolone, and how did you know between "toughing it out" versus "time to give up" or "time to call an ambulance"?

Two years ago, I tapered from 10 mg to 2 mg daily. That was managed by my asthma team in Leicester and they took cortisol tests throughout. They told me to "toughen it out" when it was rough going, and they were right, it went OK. Then I had to move to the EU, and I never managed to do the final taper from 2 mg to 0. My new consultants never brought it up, they just kept prescribing me the 2 mg pills for 2 years. Then one day they declared (via a phone call out of the blue) that "prednisolone is bad for you", and offered to taper to 0 "in a few days in a hopsital". I said no at the time (again, over the phone), b.c. I knew that the 2-0 mg schedule takes 6 months. So whatever they were offering did not make sense, it sounded like I would be in for a death march while being trapped in their hopsital, and they did not explain further.

Since my cortisol reacted "fine" while I tapered 10> 2, I figured I can taper slowly on my own terms, w/o going to their clinic. While tapering I was having fatigue and panic attacks here and there, but it was tolerable. Then at the "2-1-2-1" pattern (which took 4 weeks to reach) things started getting rough. I can't say if it's panick, hyperventilation, asthma attacks, fatigue, heart rate, or a combination of everything. The peak flow did go down 10%, although when I take Xolair shots (or get to live to the 2 mg dose) it temporarily gets better. I am now back to needing Ventolin to sleep at night.

At this point I am thinking to remain at the "2-2-1" pattern, but it feels like a failure. One part of me wants to" tough it out" (like I did in the UK) and to keep going. At the same time I do not want to have some "crisis" and I do not want to deteriorate to the point of needing 10 mg or more prednisone a day to live. But since the consultants were not helpful ("either go to our hospital, or we do not care"), I feel like I am on my own.

[Tree20862]

I have never been on prednisone for more than 6 months. My pulm and I did a slow taper. I was able to do it at home, ending in a week of 5-0-5-0.

I wish you well on this journey.

[runcyclexcski in reply to Tree20862]

Thank you, Tree. Are you still on 5-0-5-0 now? If yes, did pulmonologist decide to keep you there for now?

[Tree20862 in reply to runcyclexcski]

No. It was the end of the taper. Alternated days for at least a week, maybe 2. It was the Spring of 2017 so I don't remember the specifics.

As of now, I'm off prednisone since Dec of 2022. It was a 3 day course to get me over an asthma flare triggered by a cold. Before I started Xolair in August or September of 2016, I was treated with every asthma flare with 12 days of pred, at least 3-4 times per year. After a year on Xolair, I only had one flare per year or longer. The last 2 flares needed even less pred to stop the asthma. 🎉

[Burghy]

I am like you the aching is unbearable for me I now take two mg and I am sick of trying

[Thomas45]

For asthma I only have 8mg a day for a week. For Polymyalgia Rheumatica I started at 20mg a day and slowly reduced to 1mg every 7th day, then 0 mg daily. That took just under 4 years. I used a method called dead slow, nearly stopped, where for example reducing from 2 to 1 was 1 day at 1mg, 13 days at 2mg, then when body has accepted that 2 days at 1mg, evenly spread and 12 days at 2, when body accepted that, 3 days at 1 and 11 at 2, and so on until you get to 14 days at 1mg. Stay on 1mg a while, then same method to get to 0mg.

[runcyclexcski in reply to Thomas45]

>>>That took just under 4 years.

Wow. Well, it is what it is, I have to take it slow then. I haven't realized the body is so fine-tuned. Also I have to put a lof of faith into the accuracy and precision of pill manufacturing :). 1 mg is a spec one can just about see by eye and handle on analytical scales (if one holds one's breath). Sure, the pills are not made that way, but still.

[Thomas45 in reply to runcyclexcski]

Just under 4 years to get from 20mg every day to none. You're at 2 mg not 20.

[runcyclexcski in reply to Thomas45]

True. Although somehow going from 2 to 0 appears harder than from 10 to 2 (my NHS consultant has warned me of this).

[Tigerlils]

It took me two years to taper from 5mg daily to 0 having been on pred for the previous five years. It was really rough and I found it was harder when I got to the lower levels. The consultant said I could stay on 1mg as I was finding it so difficult but I wanted to get off it so I stuck it out. It’s nearly a year later and I have largely recovered, although coming off pred has exposed a severe sinus problem to go with my asthma.

[Kekememe1 in reply to Tigerlils]

I'm going through exactly what you went through and I'm terrified to get off prednisone. I've been on prednisone for about 6 years and right now I'm on 10mg, I have tried to taper to 5mg but always get a big flare up with massive fatigue. Did you get super tired too? I'm in the USA and basically doing it on my own. My doctor has advised me how to do it but everytime I try, I get the big flare up along with the sinus thing which then gets the asthma ball rolling. I would love to do the cortisol test but doctor says I need to be off prednisone completely for at least 2 weeks. I'm really trying and also want to lose the prednisone weight. Any tips or what you went through would be greatly appreciated. Hope you are doing much better these days!

[runcyclexcski in reply to Kekememe1]

*** but doctor says I need to be off prednisone completely for at least 2 weeks.

My specialist tells me not to take it for 24 hrs before the cortisol,

[Tigerlils in reply to runcyclexcski]

yes I was told not to take any steroids the day before a 9am cortisol test. They stopped testing after the first few reductions once they were happy that my body was producing cortisol at a good enough level.

[Tigerlils in reply to Kekememe1]

I was exhausted whenever I dropped a dose but it gradually improved after 2-3 weeks each time. I didn’t think I’d put on much weight but I still lost a lot and now weigh what I did when I was a teenager! It was an awful two years and still is due to the sinus problems, but I’m so pleased to be off the pred on a daily basis. I’ve had to have four short courses over the last years due to asthma flares though.

[runcyclexcski in reply to Tigerlils]

>>>I didn’t think I’d put on much weight but I still lost a lot and now weigh what I did when I was a teenager!

I did put on weight, too. When I feel OK with asthma, I manage to spin some of it off by ZWIFTing on my bike at home. Still, I feel like on prednisone (even if it's only 2 mg a day) I am always sluggish and losing weight is difficult. And right now, while tapering, I cannot even think about exercise -- just want to curl into a ball and sleep.

[runcyclexcski in reply to Tigerlils]

Tigerlis, your experience makes me feel better about my own "troubles". I.e. it sounds like it takes time. I have decided to try and stick to the 2-2-1 mg pattern for now; if I manage to get back to "normal life" after a month, I can try to go furhter down. Right now I feel silly b.c. I can't do any "normal" things anymore -- always feeling on the edge of having an attack. I do not have a "full" attack, but it always feels close (I am sure folks here know that crappy feeling). I hope that this goes away eventually, have to remind myself not to give up and not to go back to the original dose.

[Bigoil]

After being intubated and ventilated, the respiratory and ICU department decided to keep me on a weaning supply of prednisolone reducing from 40 by 5mg weekly for 10 weeks with the last fortnight being 5-0-5-0 then 5-0-0. This, they told me, would give time for the 4 inhaled corticosteroids to kick in. My consultant, luckily a world expert in eosinophilic, explained that both systemic and inhaled corticosteroids have long term effects but inhaled have less muscle weakness and bone decay.

If you have at least 2 inhaled corticosteroids there should be no need for systemic prednisolone, except during an attack.

[Lysistrata Administrator Community Ambassador in reply to Bigoil]

I think that last statement really depends on the individual person and what works for them. Obviously how you did it worked for you, under specialist medical supervision. But the situation may be different for someone else.

I'd also add that the adrenals need to be factored in and that will depend on past dosage. I had to take low-dose systemic steroids for about 4 years for adrenal insufficiency, rather than for asthma, due to my previous oral steroid use. (And now it turns out oral steroids don't even do much for my asthma anyway).

I would say however, for anyone reading this who does have adrenal problems that I really think an endocrinologist should be in charge if adrenal insufficiency is suspected or confirmed. There may be some asthma specialists who have ended up managing it ok but it's not their area of expertise, though of course they need to advise and work with the endocrinology side on what's best for the individual's asthma.

[janedivney in reply to Lysistrata]

I so agree with you, an endocrinologist’s input is vital. Some medics seem incredibly ignorant of the vital role adrenal glands play. My endo has provided me with a letter to show other docs, instructing them on the “sick day rules” etc. I asked for this because I’ve found other doctors don’t take adrenal insufficiency seriously enough, yet as I’ve said below, an adrenal crisis can be fatal.

[Lysistrata Administrator Community Ambassador in reply to janedivney]

Yes they used to try and mess it up every time I was admitted for asthma! I really felt like I had to be very well informed and willing to push it.

They'd often mix up the dosing with pred too, which was particularly dangerous when they wanted to give me 10mg of hydrocortisone (half the standard dose!) when I was in hospital with an RSV-triggered asthma attack.

I had to push back hard on that, especially when I'd literally just had an adrenal crisis on 4x that dose!

[runcyclexcski in reply to Bigoil]

Thank you Bigoil. Did you manage to get off it completely, or do you still take it?

I am also on Trimbow.

[Bigoil in reply to runcyclexcski]

Completely weaned by mid-june after being on it since mid-february with the occasional 4 day break. Only one 10 day course in October as an acute exacerbation (40% peak flow). It will only be needed for exacerbations. I am guessing the 3 other inhaled corticosteroids also keep me from needing prednisolone.

[runcyclexcski in reply to Bigoil]

Bigoil, thank you. Congrats on being off it, I hope I can get there, too, one day, and only use 10-14 day courses for exacerbations (like you do). My last 14-day course was 4 months ago due to Covid, otherwise I am on Xolair, montelucast and Trimbow.

[Wodie]

Hi. Has anyone Explained why there is this push to discontinue oral steroids?When your level of corisone drops it stimulates the anterior pituatry gland to produce adrenocorticotropic hormone. ACTH which stimulates the Adrenal gland to produce cortisone. If you continue to use steroids this feedback system stops and you become permanently steroid dependant. This leads to an iatrogenic Cushing Syndrome.

Please don't take this as gospel. Im dredging my memory as my Mum was left on steroids and became steroid dependant. This was an era when the dangers weren't known. There may be medical advances meantime but this may give you a base to discuss with your consultant. Good luck.

[runcyclexcski in reply to Wodie]

Thank you Wodie. I was hoping that 2 mg a day is not that big of a deal and that at that level my body still "remembers" how to make cortisol. Of course I may be wrong and I base this idea on (mostly) notthing. I think the reason why they remembered about the taper is b.c. they wanted to do a methacoline challenge to see lung function variability. On prednisone, their challenges do not work.

[Kekememe1]

Sounds about right to me. It is incredibly hard to get off after you have been on it for awhile. Sadly I've been on it for 6 years now and was an uncontrolled diabetic and obese because of prednisone. Lately I started Mounjaro and it's helping to keep my diabetes in line. I hope I can get off prednisone someday though.

[Iceskate]

Hu,

To be honest with you I used to drop mine accordingly and then come off it altogether. I felt as if my arms would burst so avoid them like the plague. If I were you I would ask for a bone scan. Are you taking calcium? I am 52 and my bones are in a really bad state. My left hip is -2.7, right hip is -2.4 and spine is -4.7. I smashed (doctors' word) 7 bones in my ankle last year. The 3 main ankle bones and 4 others as well as a severe dislocation by stepping one foot over a puppy gate in the garden. Had to have wires, plates and screws in both sides of the ankle. The screws are almost through the skin as I have very thin ankles and need it all removed. I have to inject myself every month twice for a year to help my bones. I was told a lot of steroid use have been a massive cause. Ask if you may need a bone scan , Dexa scan. Good luck.

[runcyclexcski in reply to Iceskate]

Good point about calcium, thank you for the suggestion! I hope it would come up in bloodwork, b.c. i haven't specifically asked for it. For now, I only have joint pain while sleeping, and I attributed it to aging (I am 48). I also manage to do some nordic and dryland skiing and I occasionally take spills on pavement and ice/snow -- so far no fractures, thank god (only bruises and teared pants/gloves).

Is that Dexa scan a whole body thing, or a "representative area" (like ankles or wrists)?

[peege in reply to runcyclexcski]

I've had three dexa scans on NHS (after fractures) they were all lower body taken from waist down. Might be different in Switzerland with your health insurance. Good luck with the pred reducing runcyclexcski

[runcyclexcski in reply to peege]

Thank you peege, I will ask my GP about a dexa scan then. Switzerland's system resembles the US system more than the UK system. Although I can use both German and Swiss insurances, depending on which one is better for a particular treatment/test.

[Iceskate in reply to runcyclexcski]

It is the whole body.

[YSpencer]

Sorry l have only taken short courses of prednisolone so can’t help you.

[janedivney]

Hi there. Although you’re only on 2mg, it might be your adrenals never activate fully to allow you to get down to 0. I spent 3yrs at 5mg but have never been able to cut pred out entirely and am now settled permanently on 4mg. Repeat cortisol tests indicate adrenal function of only 6% so the 4mg is just cortisol replacement.

Btw, there’s no mistaking an adrenal crisis. I’ve had two. It creeps up on you over a week or so & results in extreme fatigue & muscle weakness (even standing is difficult) and mental confusion. This is serious & requires immediate medical help because the next step is coma, and if ignored, even death.

[runcyclexcski in reply to janedivney]

Thank you, Jane. I hope it does not come to coma and the fatigue at this stage is annoying, but it does not feel like I am about to pass out yet. So I am trying to "toughen it out" and stick with the current 2-2-1 regime for a month, hoping that it will get better in a few days/weeks.

[Lysistrata Administrator Community Ambassador in reply to janedivney]

Agree that adrenal insufficiency needs to be taken seriously. And unfortunately it's often misunderstood, especially when doctors have absorbed the message about not giving too many steroids, but not the part about how they're still needed if adrenals aren't working.

I do want to add that I only ever had one adrenal crisis and it didn't creep up on me at all, but felt like it came on relatively suddenly over one evening. Though tricky to tell for sure as I had been dealing with RSV infection plus asthma which triggered it. But the part that was definitely AI crisis came on over hours not days for me.

I'm saying this just so anyone reading doesn't discount a more sudden onset. Particularly since the mental confusion is definitely there!! I decided I had hypothermia, even though I was indoors under a duvet! It took me ages (and two episodes of throwing up hydrocortisone pills) to realise what was going on and to use my emergency injection.

My endocrinology nurse confirmed that it had been one and told me I should have used the injection earlier.

[runcyclexcski in reply to Lysistrata]

Thank you Lysistrata. In my case, endocrynologist was not ever even mentioned. I guess they were going to taper in a hospital, while stimulating the adrenal glands, and over there they could "rescue" me if anything went south.

For now, I am happy to be on 10 espressos a day ro fight the fatigue which is how I lived for 20 years anyway.