Getting off of prednisone not so simple.

[Tiredofpmr555]

I was told to stop my 1.5 mg per day dosage after going through the cortisol testing in Aug. About three months went by and I started having some nausea which got worse and my appetite was poor. Also had a breathing problem develop but never had a cold or sore throat. Dr. prescribed Prilosec and Ventolin. By Christmas I had lost a lot of weight and decided that I should try going back on Prednisone. I took 10mg. and decreased every day down to 1 and stayed there and my appetite came back and the nausea subsided. I did have some stomach cramps for a few days and I increased prednisone by one three times a week,

In the meantime my appt. with my primary care came up and he is not convinced that any of this is connected to adrenal gland insufficiency and I am going to have to have two CT scans done to find out what ails me I am convinced that getting ones adrenal glands back working as before prednisone might not be as easy as it sounds

[SnazzyD]

No it isn’t easy as they say for many people. If you just stopped 1.5mg I’m not surprised you felt ill. I took months to go from 1.5mg to zero and even after stopping, I was still prone to adrenal insufficiency if I over did it for about 18 months. This is why you have to keep carrying a steroid card for a year after stopping . I had a test at 1.5mg that said the glands were capable of working but it doesn’t say if they will do so every time, especially if one has a big demand on the body. However, it is good it isn’t just being blamed on your adrenals too and you’re getting more investigations. It may be something else cooking which may even be putting extra strain on your body on a daily basis that your adrenal glands aren’t yet ready to cope with.

[PMRpro Ambassador]

You are absolutely correct. The test showed your adrenal glands COULD make cortisol - not that they were doing it reliably and consistently. To tell a patient to just stop at 1.5mg is asking for trouble - even 1/2mg of pred can be enough to manage the inflammation produced by a very low level of activity of the underlying cause of PMR. Tapering slowly goes all the way down to the wire - and the wire is zero pred.

But a few extra tests isn't a bad thing - make sure nothing is hiding in the undergrowth!

[pmr_nikola]

Additional tests wont hurt and you will feel more at piece, but just for reference to go from 1.5mg to zero it took me from mid April to mid December. Even then I could feel 0.5mg drops.

[okydocky]

Thank you for your input

[PMRfacebook]

It took me a year to get from 1.5 to 0 and it wasn't easy. It has taken a further year at Club 0 Pred to feel "well" again. The last hurdle is often the hardest. My GP gave similar advice about stopping altogether at 2mg but fortunately, due to this Forum, I knew better - good that you're having further tests- good luck

[Tiredofpmr555]

I was so happy thinking I was off of steroids but it looks as though that was wishful thinking. Thanks for your input. I'll post later after I have these CT's done and get results.