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
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!
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
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.
Hi PMRpro, no I didn't drop drastically. I alternated between 1mg and half a mg for several weeks.
Jenny x
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.
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.
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!
Good to know!
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.
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
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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