upping Steriods

[Eternity6]

my liver inflammation is rising , I’m just getting over covid, two neg lateral flows now, but I have orange urine and as I passed out was taken to hosp did loads tests one being liver, my level was raised into hundreds, and I’m at home no energy for last 10 days, having tried to get hold of my consultant few mins ago, he’s saying as I’m now on 50mg aza and only 1 mg of pred I now have to boost my steriods for seven days to now 10mg starting tomorrow, I’m scared stiff of raising it as I remember how poorly I was raising it years ago, obviously I’m going to do this as I understand it has to be done, anyone else had to do this short term and then decrease slowly!

[sylvi]

You sound like you have been quite poorly darling. Sending you hugs. xxxxx

[Eternity6 in reply to sylvi]

Thankyou Silvi xx

[Runrig01]

I had trouble years ago with Azathioprine, they increased my Aza from 150mg to 200mg, which sent liver enzymes soaring. I had to have lots ver ultrasound then switched to MTX.

I’ve been on steroids for 10yrs, if I’ve increased for a short period of a week, I’m allowed to go straight back to my previous dose. If it’s more than 2 weeks I have to taper off very couple of days. 10mg isn’t a large dose, so hopefully you’ll cope fine and it should help the inflammation in your liver.

[Eternity6 in reply to Runrig01]

I’m on 50mg aza I’ve been on steriods 17 years, but have almost come off them I was on 1mg and thought I was doing so well, then caught covid and my liver levels going up ( hence no energy at all) can’t walk very far average 20 steps and have to sit down, lateral flows are now neg but I’m left like this,, really scary no energy and breathless now, so consultant has advised that I go straight to 10 mg pred this morning! I was concerned it was a big jump from 1mg but totally understand it has to be done to get my liver reducing inflammation, about to take it after my breakfast dreading side effects ,

[oldtimer2]

10mg is quite a low dose of steroids. Used short term steroids can be very useful for reducing inflammation. But they don't tackle the underlying cause which needs a diagnosis and treatment.

[Eternity6 in reply to oldtimer2]

I have the rare autoimmune hepatitis I e had it for many years

[oldtimer2 in reply to Eternity6]

I'm sorry to hear of your diagnosis, but the inflammation does need supressing!

In the past I have had to have 60mg steroids to suppress inflammation causing bone marrow failure and then tail down slowly - it did send me a bit loopy and I put on 10Kg of weight which I've gradully managed to lose again.

[Eternity6 in reply to oldtimer2]

wow that’s a high dose, and you have managed to lose the weight that must have been difficult for you, how long did it take you to taper down from 60mg?

[oldtimer in reply to Eternity6]

It took about two years to lose the weight. But I was able to tail down the steroids in the first year. But I have to be on a maintenance dose of 5mg now. So far have managed not to have osteoporosis or diabetes. But it's better than the alternative of dying from bone marrow failure !

[Mozart150]

sending a big hug -get well wishes xx

[Eternity6 in reply to Mozart150]

thank you so much xx

[wilbertjellyfish]

When I was unwell before Christmas a respiratory DR said..."obviously you know to double your steroids when you're ill". I'd not heard this but it makes sense. Your body naturally produces more steroids in response to stress such as being unwell. When you are on steroids even low doses it suppresses your body's ability to react to stress and produce more. So a short increase then cut them down. I think if you're on steroids less to five days you don't even need to wean off.Hope they do the trick and your feeling better soon. Also drink plenty, orange urine can come from dehydration.

[Eternity6 in reply to wilbertjellyfish]

I didn’t know you had to actually double your steriods when you are feeling poorly, but obv I got in touch with my specialist and he said you really need to go to 10 mg for a boost as obv the 1 mg steriod I’m on is doing next to nothing, I’m going to be on the steriod 10 mg dose for 7 days and after liver inflammation test I will be told what to do

[wilbertjellyfish in reply to Eternity6]

I'd never been told it either but the way this respiratory Dr said it, it was like common knowledge. I understand the rationale and I'm usually (at the minute) on 10. I uped mine a bit but have cut them down now I feel better.

[Eternity6 in reply to wilbertjellyfish]

glad you feeling better

[Leics]

I hope you feel better soon. As others have said 10mg isn’t a massive dose of pred but totally get your concerns if it doesn’t suit you. Be very vigilant about how you are feeling but hopefully your doc knows what he’s doing and inflammation is needing to be reduced. I’ve had a week of 40mg without taper before due to long standing chronic cough and breathlessness and I don’t have asthma. I’m sorry I can’t be of more help and to be honest we can only give you a sense of our experience and we are all different and unable to give you medical advice. The one bit of advice I can give you is drink as much water as you can stomach as it will help flush your kidneys and remove some of the toxins dehydration is no joke so live near the tap if you can.

[Eternity6 in reply to Leics]

yes I was dehydrated when I passed out and was taken to hospital but obv wasn’t drinking enough but for last nine days I’ve been drinking 2 litres of plain water every day and it stopped the dizziness, yes I have a very good consultant and I have a lot of faith in him, thank you Leics

[Leics in reply to Eternity6]

Oh well I’m glad it seems as though there is a bit of an improvement for you. I’m only one day post covid and I’m certainly hoping I’m over it with the help of antivirals which to be honest made me very poorly and I’m convinced I would have become dehydrated had I not stopped them with docs ok to do so. Will hope you improve with the help of increased steroids and it makes things better for you. It’s also very good to hear that you trust your consultant because that’s half the battle.

[Eternity6 in reply to Leics]

my consultant at the hospital is amazing I can’t fault him, I wish I could say the same about my local gps

[Deeb1764]

I do the up

And down of steroids a lot. My norm is now 5mg but at moment due to breathlessness and maybe infection up to 20mg. Do this for a week then next week 15-10 then 10-5 as long as everything holding ok. It’s a normal plan with my GP to try and fight it all.

[Eternity6 in reply to Deeb1764]

how are you feeling on 20mg so you come down 5mg drops each week until you back to your normal 5mg is that right

[Deeb1764]

I feel Ok coming down I think as been doing this for 3years my body issues to the swings of it. I tend to do 20mg for example then the following week I will do 4 days @‘15 then alternate 15/10 for 4 days then 10/5 for 4 days then to 5mg.

My GP is good he knows I get my steroid use and is happy to allow me to come down the way I do it as it works for me!

[Eternity6 in reply to Deeb1764]

good it works for you x

[Paisley58]

Wishing you well.🙏 sending you lots of love and light 💕

[Eternity6 in reply to Paisley58]

thank you very much only on the second dose of 10mg so no improvement yet early days though