Vasculitis UK

Reducing Pred and elevated leukocytes

I am now down to 4mg of pred after 12 months with highest dose being 25mg. Also on 2g mycophenalate. I believe the myco has allowed me to reduce the pred which is great however I am so fatigued yet can't sleep. No energy whatsoever. Also, having always had elevated wbcs which led to diagnosis of Lcv along with biopsy. My leukocytes have always remained high whilst on pred. Drs says pred can do this. Why now I am reducing pred are the wbcs still rising ? ALSO WHY am I not losing weight and this moon face?

1 Reply

Some people don't lose the weight until they have stopped the pred altogether - sorry. My friend put on 6st - didn't lose an ounce until she took her last tablet and then, without her noticing, it just melted away. She finally noticed when her skirt fell down in a shop!

I lost all my pred-associated weight while still on 10-15mg pred - but I cut carbs drastically. Even now, if I eat more than a very small amount of carbs I don't lose any more and even put on weight.

And the fatigue - is very possibly adrenal insufficiency. While you are on pred at above about 8mg your adrenal glands don't need to produce cortisol, the body's natural corticosteroid that is essential to function properly. As you reduce below that your body has to start to produce cortisol itself again - and it can take some time to settle down. The slower you reduce the dose the less your body notices: every time you change the dose the whole feedback system that governs it swings about again and takes a while to settle down. One doctor in the south of England likes to keep his long term pred patients at 5mg for up to 9 months on their way down - just to allow the body to catch up and it makes the rest of the journey easier for most. If you don't have the fatigue problem then obviously you can keep reducing - but as soon as the fatigue starts, try slowing the rate of reduction down.

Some endocrinologists feel that at about 5mg it is advisable to switch from pred to the equivalent dose of hydrocortisone which is a shorter-acting corticosteroid and may need to be taken twice a day but this encourages the adrenal function to return better.


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