Delayed reaction to steroid drop

[Neriah]

Hi everyone, I came off my last one mm of prednisolone 8days ago. To my surprise, I felt wonderful, more positive and full of energy than I have for years. However 8 days later, I'm suddenly exhausted and pretty achy. Can you have a delayed reaction to steroid drop like this/

[PMRpro]

Why not? It was a 100% drop in the amount of pred your body was used to! And while it wasn't much - it may have been enough to keep your system running happily. Your body has had to make up for that and it is a very complex system involving several organs and hormones which can take some time to settle down. Especially if you went from every day 1mg to every day 0mg.

[Neriah in reply to PMRpro]

Yes, I can see that. But subdividing 1mg is tricky. I could try one day on and one day off I suppose. Perhaps just being a bit too enthusiastic.

[PMRpro in reply to Neriah]

Doesn't matter how accurate it is - it is still less than 1 and more than zero. But taking 1mg and then adding in an odd day without works too. Start say with a few days between the days with none and reduce the number of days slowly until you get to alternate days and then increase the number of days without pred slowly. Do you see what I'm saying?

[Neriah in reply to PMRpro]

Yes I do. Thanks. Now this is probably an obvious question. Would just that 1mg drop be enough to unmask what my GP thinks may be diverticulitis.? Hardly constitutes a flare, but quite painful. Certainly came on 8 days after steroid drop.

[PMRpro in reply to Neriah]

1mg is certianly more than enough to unmask PMR! If the dose is just managing inflammation of some sort, doesn't matter WHAT sort, and suddenly it isn't QUITE enough, after a few days it will mount up to enough to feel again.

[Neriah in reply to PMRpro]

Bother, is all I can say. I am trying alternate day 1mg dose pred and also taking turmeric milk and aloe vera. Might add in slippery elm.But thanks for your response. I will get off these damn steroids if I possibly can.

[PMRpro in reply to Neriah]

" I will get off these damn steroids if I possibly can."

Why? you are on a low dose - with no real longterm side effects

medpagetoday.com/rheumatolo...

and your body is producing corticosteroid anyway - you'd be dead without it! Once you are below about 7mg your body tops up what you take as tablets.

Low dose pred has far fewer side effects than a lot of OTC medications.

[Melba1]

I had something similar when I dropped from 10 to 7.5, felt great for about 2 weeks (almost normal !) then over the next 2 weeks got the fever, ulcers, rash and joint pains then in the next 2 weeks reflared very badly with neurolupus so back on 40mg 🙁. I’m not sure it was just the steroid drop but think my body flares at below 10 at the moment. Yours sounds different as 1mg probably doesn’t stop you flaring but removing it may cause steroid withdrawal symptoms I think? But PMRpro is the expert on steroids so maybe look over her previous advice on dropping it slowly? It’s hard mentally to do slowly though - I’m always desperate to get off them quickly but have learnt it’s then one step forwards but many steps backwards. Hopefully yours is just a blip for a few days whilst your body adapts?

X

[Neriah in reply to Melba1]

Thanks Melba 1, that's helpful. What confused me was that I did feel so good and energetic after I stopped. As you said - almost normal! So it's useful to know someone else has had a similar experience, though I don't see the physiological logic of it. Previous reductions of steroids I've had the reaction immediately which makes sense.

I'm sorry about your experience. We all try so hard and bravely to get off the steroids. How on earth did you manage 40mgs without killing someone though?!. My limit without meltdown is about 25. But you are so right - slowly, slowly, slowly. Grrr.

[Melba1 in reply to Neriah]

Yes this disease is teaching us patience if nothing else 😬

Really hope yours is just a short term adaptation to being steroid free and you have that lovely normal feeling again soon.

Oh dear- yes I think a lot of people feel like you on high steroids. I am the opposite - just feel ‘high’ and laugh inappropriately!! So I suppose that’s better even if it does embarrass my children (like when I had hysterics at parents evening and just couldn’t stop laughing - my son had to apologise and say it was the drugs!! 😱😂)

[Neriah]

Oh dear oh dear. Never mind about you embarrassing the children, what about them embarrassing you?

Phoned doctor who was sympathetic and said it could well be steroid withdrawal and opined that the accompanying pain in the hip coul be osteoarthritis revealing itself as the steroids disappeared. Oh good! I hadn't thought of that. Just toying with diverticulosis as an idea.