Friday, April 18, 2014

Holding My Breath

It's been 4 days since I stopped taking steroids. It's been 2 days since I saw my transplant doctor. So far, so good. And now I wait to see if the lung GvHD has been tamed.

It takes 14 days for steroids to leave a person's system. The last time I stopped steroids I managed 12 days of easy breathing.

People tend to think that once the steroids stop, you immediately go back to feeling like yourself. There's one person in my life who insists on telling me that I should feel better because I'm off steroids. I've explained to them how steroids work and what the side effects of being on and off of them are. They keep insisting that I should feel better.

Here's the reality: I have trouble concentrating. I have problems forming complete thoughts some days. I'm tired in a way that only weaning off of steroids can leave you. I've put on 20 pounds since starting steroids last July. My hair has fallen out, grown back in, and fallen out again. I've developed cushingoid features. The muscles in my lower body have deteriorated significantly. I have general muscle weakness. My adrenal glands aren't functioning properly. I shake uncontrollably some days. The list goes on.

Most of these symptoms are temporary.

A check of my cortisol levels revealed that I'm producing next to none. This could mean adrenal insufficiency. My transplant doctor checked in with my endocrinologist regarding my very low levels. The current thought is that I'm too close to having stopped steroids to make a definite decision. I'll go back in a month and have my cortisol level rechecked. In the meantime, I'm supposed to report any side effects related to adrenal insufficiency to my doctor.

I'll be vigilant and I'll continue to go about my life as I usually do. One day at a time.


LPC said...

And sending you hugs and hugs and hugs.

Ronni Gordon said...

Hey nice new look on the blog and good luck with the taper.

PJ said...

I too tapered my prednisone from 15 to 10 five weeks. This was 2 weeks ago.I too feel weak and not my self, but I'm hopping to find some muscle in there. My legs like yours won't support a matchstick. The itching has mostly subsided, a good thing.

Nancy said...

My dear Ann. I just read your last few posts. I'm sorry that you are suffering so much. I hope the taper is going well, but I totally get the stuff you are going through during and after the steroids! I hope your adrenals bounce back.... I wish I could help you my dear. Mark and I were just talking about our visit with you last October. We had the most amazing weekend with you. You are such an inspiration. Hang in there and like you said, take one day at a time. Love you soooo much! Nancy