Mastodon itchy again. GAHHHHHHH. —

itchy again. GAHHHHHHH.

On Friday, exactly two weeks after my final dose of Prednisone, and with the Prednisone side-effects nearly gone, the full-body itch returned. My entire skin hurts. I don’t know if you’ve ever noticed, but in large quantities the “itchy” sensation is actually a special kind of pain that makes you want to claw your skin off with your fingernails…

So I started back up on the hydroxyzine and have been so groggy for the last two days that I can scarcely move. Groggy and itchy and in terrible terrible pain from the Remodulin infusion site I started on Thursday.

Now it’s very early Sunday morning, still dark, and I woke up from the itchiness.

I have leftover Prednisone so just now I broke a tablet up and took about 5mg. Dr. Nguyen told me he thought the itch would return, and that I’d need to be on a steady low dose of Prednisone (10 mg) but oh how I was hoping that wouldn’t happen. But here we are.

Dreading the return of the Prednisone side effects. Dr. Nguyen said they wouldn’t be bad on a very low dose. We’ll see. I’ll try to get an appt with him Tuesday (he’s out of the office on Mondays) and get an official prescription for whatever dose of Prednisone he thinks might work. Until then I’ll take 5mg a day and hope it keeps the allergic reaction under control.

I had three good days between the diminution of the Prednisone side effects and the return of the itch. I made dinners for family, babysat children, and recorded an audiobook. (see below) Three good days at the top of the rollercoaster and now it looks like I’m heading downhill again.

I don’t know how much more of this I can take.

Category: Blog 10 comments »

10 Responses to “itchy again. GAHHHHHHH.”

  1. Kathy

    Kara, I’m so sorry to hear about this horrble reaction! It’s Tuesday now so I hope your doctor was responsive to your needs and can work with you to figure out some kind of balance. I love you so much and hate to hear about this reaction.

  2. Chrisentiae

    Get well soon *positive vibes* !

  3. zml


    I am from China, and a father of 10 years old duaghter. I downloaded your beautiful sound recordings and play it for her, or listen them by myself. Out of many, the most attractive one is the secret garden. I think you really read the book with your love and passion, and you manifest the stories.

    Sorry to know that you have challenges recently. I hope you can recover very soon. I hope you enjoy the sunshine at California every day, and a healthy and happy 2018.

    Merry Christmas!

    A fan of your recordings.

  4. nibin

    I hope you get well soon :)

  5. Tess

    Hi there,

    This is my first time on your site, but I found you through Librivox. I just wanted to let you know how much we appreciate your recordings–I love your voice. I’m so sorry that you’re ill–I will pray for you.

    Congrats on becoming a grandma!

  6. Gillian

    Hi Kara. I keep checking back here regularly, hoping to read that your doctors have managed to get your symptoms under control without too many side-effects. I do hope that this year will be less difficult than last one. I’ll be thinking of you.

  7. kara

    Thank you so much, Gillian. The jury is still out, but I think have found a fairly good solution to my horrible adhesive allergic reaction and I will write a new post soon :)

  8. Carolyn

    Hi Kara,

    I’ve not been by your page for a while, but always come back as your reading is so wonderful to listen to.

    About your rash, I use kinesio tape on my feet to help circulation. I need to have the tape on all the time, and change it 2 or 3 times a week. I’ve found the adhesive on the tape unexpectedly does not bother me. I don’t know if this type of tape would help you but wanted to mention it.

    Best wishes, and thank you, thank you! for your reading,

  9. Andy


    I just wanted to wish you well and thank you for your wonderful recordings, which have been very comforting for me these past few weeks. I hope your health will improve soon.

    Thanks once again and greetings from the cold and dark Finland.


  10. Susan Goode

    Hello Kara

    I’m another person grateful for your voice reading to me. You have a beautiful voice, but what I love best is you reading to your son, his comments and delight, and your calm attending to his questions. And the fabulous books you read!

    May your health be stable this year and may researchers and doctors invent many more things to keep you comfortable and well.

    Susan in Sydney

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