24 years on long term predislone

[Foodstuff]

Hi

I'm in the process of coming off long term predislone after 24 years and feeling really tired run down and had to take a day off work to sleep .I had 18 hours and do feel a bit better but need to know its not just me as my asthma nurse says there is no connection.

Any thoughts

[Bronagh2015]

Hi Foodstuff, have you had a synacthen test carried out? I was trying to get of Pred after 20 years and when I managed to get down to 5mg my Consultant carried out this test on me, unfortunately it showed that my body has forgotten how to produce cortisol so it's Pred for evermore now. It means I now have adrenal insufficiency so have to make sure I always have extra Pred at hand in case of an accident or severe illness.

[Foodstuff in reply to Bronagh2015]

Hi I've had the test and it shows that it's working fine but that doesn't help that I'm so tired

Thanks for the reply.

[Matti1]

I hope your asthma nurse knows what she's doing.

I was on permanent steroids for two years and the withdrawal effects of you Google them can be horrendous. I had some and had to taper down 1mg a month once I got to 10 and then exacerbation and had to go back up and start again.

Eventually due to withdrawal we went to half milligram reduction a month. It's not pleasant but lots of people on Google describe the symptoms of you Google long term Prednisolone withdrawal symptoms.

Yes the replies above on synacthan test are correct, you should have had that and sadly one person has to remain on them. I had that test and was still producing cortisol which is hormone from adrenal glands that synacthan test checks.

[Emily35]

Long term pred can definately make you feel this way, tired and achy.

Can I ask, are they giving you an alternative treatment in replacement for the pred to manage your symptoms, or is it that those symptoms have eased so you are now able to try reduction??

Good luck and hope things settle down

Emily

[Steven9818]

I have seen quite a few (patients) with similar symptoms coming off long term Prednisolone. Most report extreme lethargy (usually when dropping below 8mg daily) and flu like symptoms. It will get better, just stick with it as best you can and good luck