Recently Diagnosed. Advice on Next Steps?

Joel,

Your counts are excellent!

Cushing's syndrome is the constellation of symptoms produced by too much cortisol (a hormone produced by the adrenal glands). When it is caused by a pituitary tumor, only then is it called Cushing's disease. Prednisone is a synthetic form of cortisol, so it will also produce those symptoms. Prednisone suppresses your natural production of cortisol, so when you wean off of prednisone your body actually produces too little cortisol. This is the opposite of Cushing's, and is called adrenal insufficiency. Prednisone causes the symptoms of Cushing's disease, but not the disease itself. If you are having multiple Cushing's symptoms, you should have your cortisol checked for a problem with your adrenal glands or your pituitary. However, there is a long list of conditions that cause eosinophilia, including allergies.

My wife is 21 months into a partial response to Rituxan, with counts mostly in the 50s. A few times she has dipped into the teens and twenties, and each time her counts recovered without treatment. If your count falls into the thirties, that is still a safe count, and given the risks and side effects of every treatment there is (including splenectomy!) one can easily live with counts in the 30s, with an occasional course of steroids, IVIg, or Win-Rho if higher counts are needed for surgery. If platelets drop too low too often, and further treatment became justified, splenectomy would not be the next treatment on my list.

Joel:

Your counts are great! They could still go up or down and only time will tell. I wouldn't even think about splenectomy at this point. That is usually used for people who have consistently low counts and who do not respond to treatments.

Cushing's symptoms during Prednisone is normally temporary. They are symptoms, not the actual disorder. I have never heard of anyone actually acquiring Cushings after steroid use.

Thank you Rob and Sandi!

I was confused about the whole Cushings thing thank you for clearing that up. The symptoms are starting to fade I think. My neck was still bothering me for a while but the hump has mostly gone away. I feel pretty great about where I am at right now. So hopefully we continue to see a rise! I couldn't believe it when they told me 100 and even though it dipped to 95 I still feel confident it will go up again. I was pretty bummed out immediately following treatment with no results. It's hard to take people's word for it that it might just change one day.

Just as a note for others, I haven't done anything crazy. My diet has not been perfect honestly and not a ton of exercise (We just had our first baby). I did start buying organic veggies and I have continued to avoid alcohol, nicotine, and caffeine. I did develop a pretty intense cookie addiction during Prednisone and Rituxan treatments lol. I've left many empty Chips Ahoy trays in my wake the last 6 months.

My goal is to get on a regular plan with diet/exercise, but for the time being the rise in count seems to be due to delayed response to meds mainly.

You're doing well. Try not to stress over it.

I agree with Sandi try not to stress. I had to smile at your cookie addiction while on prednisone, years ago, while on pred, I made 2doz cookies to take camping. I had eaten them all before we got out of the city limits :laugh: