Feel like death ... : Hi recently been diagnosed... - LUPUS UK

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Feel like death ...

Leighlup profile image
13 Replies

Hi recently been diagnosed about 3 months ago i was put on pred for tge past 3 months startin with 10mg going down to 7.5 5 and 2.5 i had to come off them due to bad side effects but i has got down to 5 mg i am now gaving what i think bad whithdrawal symptoms what can i do to stop feeling like this worse feeling ever gettin me down ...... i have started back on 2.5 jus to see if itll take the edge off it ... :(:(:(:(

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Leighlup profile image
Leighlup
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13 Replies
whisperit profile image
whisperit

Hello leighlup,

@PMRpro is our local expert on prednisolone dosing, but I think it's fair to say that many of us find that after a while on 10mg or more, reducing past around 7.5mg a day can be tough. This is the level where the body's own cortisol production has to kick in again to substitute for the prednisolone. I'm not sure that there is a simple way of easing the withdrawal symptoms, but if you are struggling, that probably means you are reducing too quickly. Going down by just 1mg a week, or even less, may give your body more time to adjust. Hopefully, once natural production is fully online again, the symptoms will go. x

Leighlup profile image
Leighlup in reply to whisperit

Thankyou for your reply not a nice feeling .. :( hopefully soon back on my feet ..

JazPont profile image
JazPont

Leighlup have a chat with your GP about it.. don't suffer darl, if your experiencing withdrawal symptoms your doc can help you with that.... take care and stay positive xxxx

Leighlup profile image
Leighlup in reply to JazPont

I cant see nothing ?

JazPont profile image
JazPont in reply to Leighlup

Sorry my phone is being stupid!! I just edited it xxx

Leighlup profile image
Leighlup in reply to JazPont

I jus read it thankyou i have jus rang my gp what do they give to help do you no plus i had to try get of the pred as was having major thrush never suffer with thrush either . Xxx

JazPont profile image
JazPont in reply to Leighlup

Well if your experiencing withdrawal symptoms then your body still isn't producing the right amount of hormone to replace the steroid, hence the awful symptoms. Maybe he could advice you on a diet plan, natural herbs, or a tablet of some sort. I'm not a GP though so don't quote me me on that lol. As @whisperit said above, your maybe reducing to quickly. They can certainly give you something to help with the thrush though! Xxx

Leighlup profile image
Leighlup in reply to JazPont

They gave me pessary and cream didnt even touch it .. x

PMRpro profile image
PMRpro in reply to Leighlup

Then your doctor needs to find a better approach than a pessary and cream! Oral nystatin is a good start.

It can be managed - but it needs the right approach.

PMRpro profile image
PMRpro

What were your "bad side effects"? "Just" thrush?

Pred has a lot of potential side effects but almost all of them can be managed when you know how.

As the others have said, I'd suspect you have reduced too quickly after being on for more than a couple of mmonths and you are suffering adrenal insuffiency problems until your body catches up. It can make you feel really unwell. Unfortunately the only cure is to reduce more slowly - neither diet nor supplements will do anything. And you could be made quite ill in certain circumstances so if you do feel really unwell call the emergency doctor and tell them you are recently off pred.

Leighlup profile image
Leighlup in reply to PMRpro

I also had blurred vision quite badly...

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK in reply to Leighlup

Hi Leighlup,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. The contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. To download or request the pack, please click here: lupusuk.org.uk/request-info...

Have you spoken to your doctor about this?

Prednisolone is discussed in our factsheet 'LUPUS: and Medication' here: lupusuk.org.uk/wp-content/u...

You may like to read our factsheet on 'LUPUS: The Mouth, Nose and Eyes' here: lupusuk.org.uk/wp-content/u...

Please let us know how you get on, wishing you all the best.

leslieliesel profile image
leslieliesel

I also was on prednisone for 2 months 10 mg....I slowly taped down and had a couple of tough with- drawl days....I managed to push through the feelings..or maybe I just embraced them...I did get off and I have no with-drawl issues any longer...I began pred last September I'm fine now....even though I don't feel as well...but my fear of pred side effects are worse than the pain...plus I had to get off to have an up coming sugey

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