Life After Pred!: Hi everyone, I have been off Pred... - PMRGCAuk

PMRGCAuk

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Life After Pred!

Attic profile image
15 Replies

Hi everyone, I have been off Pred for about 4 weeks now after being on it for just over 6 years.

I thought I would feel great once I was off it, but instead I feel completely washed out, weepy and exhausted.

My question is, is it normal to feel like this, or should I go to the Doctors. No sign of PMR though, so that is good news.

Thank you, Jenny x

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Attic
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15 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Just because you’re off the Pred, doesn’t mean everything is back to normal. It takes time for many things to readjust to life after Pred.

Sounds as if your Adrenals are still struggling - and to be honest there’s not an awful lot you can do about that... except be patient.

They will get back to full working in time - but they don’t switch back on like a light bulb... more like the first low energy ones that took time to build up to their full potential!

Just give yourself some TLC and take each day as it comes - cliched I know- but that’s how it is!

Attic profile image
Attic in reply toDorsetLady

Thank you DorsetLady. I think I am feeling a bit low because I have Atrial Fibrilation and have started getting more attacks off that as well.

I will be patient as you say. I don't know what I would do without this Forum, it is such a great help.

Thank you Jenny x

PMRpro profile image
PMRproAmbassador in reply toAttic

WAtch out for the a/f - mine always comes out to play if I drop the pred dose! No rhyme nor reason except I did have to admit that a G&T wasn't good for it :(

PMRpro profile image
PMRproAmbassador

It is thought it takes up to a year for adrenal function to be reliably back to normal. Did you drop from 1mg to zero straight off? Even 1mg can be doing lots and must be made up for.

Attic profile image
Attic in reply toPMRpro

Hi PMRpro, no I didn't drop drastically. I alternated between 1mg and half a mg for several weeks.

Jenny x

HeronNS profile image
HeronNS in reply toAttic

If you have to go back on for a small dose at any point, when you taper off again, alternate between .5 and zero for a few weeks - an extra step beyond what you just did.

SnazzyD profile image
SnazzyD in reply toAttic

I took about 8 months to go from 1 to zero and fiddled about with cutting 1mg into 4. I definitely felt the lack between 0mg and 0.5mg which is why I went so slow at the end, all the while thinking it was ridiculous but my body was having none of it. The endocrinologist who signed me off a few weeks ago made some noise on the end of the phone that made me think that they thought it was overkill. So what? It worked form me. There is a reason why they say you should carry your steroid card for a year after stopping Pred.

Viv54 profile image
Viv54 in reply toSnazzyD

No one has ever offered me a card !!

Rugger profile image
Rugger in reply toViv54

Your Pharmacy might have one, otherwise you can print one from the internet. Search on "Steroid Emergency Card". It used to be blue, but it was updated in August 2020.

Viv54 profile image
Viv54 in reply toRugger

Thank you , i will.

Mikb profile image
Mikb

I have been off pred for 8 months now. The first 6 months for me were rough, but I am feeling less tired and more energetic now!

SheffieldJane profile image
SheffieldJane in reply toMikb

Good to know!

Lollybygolly profile image
Lollybygolly

Well done!! I assume you tapered very carefully. Not tapering, as I found out this week, isn’t clever. Apparently the cortisol levels can be affected drastically - I went from 5mgs to 0. My body seemed ok but by day 6 I was crippled with wrist hip and knee/ankle pain. I’m back on 5mgs with a 2mg uplift today, day 7.

The hormone imbalance deserves a blood test (I’m having my first one this year) to check out what’s happening. But no pain is terrific. Be kind to yourself! Good luck.

Attic profile image
Attic in reply toLollybygolly

Hi everyone, thank you all for taking the time to reply to my post. I think it makes you feel better when you know you are not on your own doesn't it.

Take care Jenny x

Andymurph profile image
Andymurph

Bless you Attic

You're not on your own. Unfortunately we sometimes find getting to zero isn't what were expecting.

I speak from experience.

As others suggestedI think a precautionary blood test might be wise.

What are you taking for your Afib ? some of the beta blockers don't suit everyone,

I was taking 7.5mg of Bisoprolol after my Afib diagnosis and found I was like a dying duck by early afternoon.

I'm not a fan of GPs but it might be worth a referral and chat to your cardiologist.

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