Prednisone: The Good, the Bad and the Ugly

It's been about four weeks since my liver rejection episode and it appears that things are steadily improving. My lab results are trending in the right direction (numbers are falling) and while bilirubin, ALT, AST, GGT, alkaline and the rest are still notably out of range, they are vastly improved from a month ago.

So the waiting game continues, with plenty of medication juggling to compensate for the liver issues and to accommodate changes caused by prednisone, the steroid I'm taking. I can't recall taking steroids in the past, so it's been quite an eye-opener.

Unfortunately, prednisone isn't going to give me a ripped physique. Yet I'm not gaining weight, either, which commonly happens, so I don't mind foregoing the muscles. Here's how prednisone has affected me so far, along with some of its other potential side effects:

Blood sugar - Mine is OUT OF CONTROL. Whether I eat a pint of Ben and Jerry's ice cream or a handful of plain lettuce, my blood sugar can jump to 300+ (or more). I take long-lasting insulin twice a day and short-acting insulin three or four times. I watch what I eat, as before, but need the extra insulin to keep my blood sugar in check.

Blood pressure - Had to increase my blood pressure medication.

Energy - This is a good news/bad news side effect. Steroids give you energy (no wonder athletes like them! however, they take a different type of steroid) and most days I can get more done than I have since my transplant. The flip side of this coin is that I have even more trouble sleeping. The result is that I have several really good days and then I'm wiped out.

Acne - The ridiculous back, shoulder, arm acne. Thankfully, don't have this and pray it doesn't pop up. As I told my transplant coordinator, this side effect could be a deal breaker.

Fluid retention - My ankles and feet have been retaining fluid off and on for a couple of weeks now. My doctor prescribed diuretics, but has pulled me off them due to other issues. Thankfully, the swelling is intermittent and seems to abate without the meds within a day or two.

Mood swings - I've experienced this, too, but thankfully not often. The moods seem to manifest mostly when I'm talking to a customer service rep at my insurance company or online retailer or something of that nature.

There's an informative web page on the Mayo Clinic site that offers a good overview of corticosteroids, including prednisone. It's been a good starting resource for me.

Photo by Patryk Choiński

I am the Ringmaster

Oh, for crying out loud! I KNOW I need to be my own healthcare advocate, so shame on me for letting this happen. Live and learn ...

In my last post I described my recent flurry of doctor visits - four doctors in one week - and each made changes to my medications. These doctors know about each other and sometimes share my lab results, but that's where the collaboration ends. Fair enough: Most healthcare services are delivered this way and it's up to patients to play ringmaster.

Alas, I forgot this important lesson two days ago when I began taking the four new pills, vitamin E and two new types of insulin my doctors prescribed (these were added to the five pills and multivitamin I already take). Day one - bad headache and fatigue, which I chalked up to being overwhelmed by the changes, and little appetite. Day two - headache continues, little appetite, don't feel great but doing OK until about 5 pm, when I threw up. Hmmm. Threw up again at 10 and four more times last night. Now I'm worried about taking insulin when I haven't eaten much, especially since what I ate didn't stay down anyway.

I've been a bad ringmaster. All these med changes are wreaking havoc on my body (starting five new meds at one time wasn't such a great idea, I'm thinking). It's an experiment without any controls. My primary care physician would have been the most likely person to view this from a big picture perspective, but I saw her a week ago and most of the changes occurred after that visit. Two of the medications have side effects that can include "gastric distress," and I sincerely wish I had started them separately. Ah, such is hindsight.

This morning I woke up and, good news! no headache. I ate a scrambled egg and kept it down. But before putting a pill in my mouth I called my transplant center to speak to the person on call and, as luck would have it, my coordinator answered. She had me discontinue one of the pills (a gastric distress-causing med) and called in a prescription for nausea. Even without the nausea med, the vomiting has stopped. However, I now have diarrhea. Oh, fabulous.

Tonight I'm stopping the other gastric distress-causing pill and will see what happens. Tomorrow is my body's day to reach equilibrium; Monday I can start a smaller dose of one of the meds and, in a controlled manner, see if I can tolerate it and later in the week, I'll try the second one.

Note to self: I must pay attention. I'm the ringmaster; the lion tamer, if you will. It's up to me to bring order to the chaos.

Top photo by Claudia Meyer

Bottom photo courtesy of U.S. Library of Congress

The Miraculous Merits of Magic Mouthwash

One of the ongoing side effects I’ve experienced on my Hep C treatment is sensitivity in my mouth. The area under my tongue, the inside of my lips and even spots on my tongue are uneven – not smooth like they should be – and feel as though a sore could break out any time. Some areas have been painful and I’ve had occasions where my teeth ache and it hurts to bite down, but not in the “I need a root canal” sense.

At the most recent visit to my primary care doctor I described the discomfort and with a stroke of her pen, Dr. M. prescribed relief for this annoying side effect that’s plagued me for more than two months.

The miracle: Magic Mouthwash. This stuff is amazing. Swish just a bit of it in your mouth and it immediately numbs and soothes.

Magic Mouthwash is often given to people with oral ulcers, especially cancer patients undergoing radiation or chemotherapy. I’d never heard of it until a couple of years ago and forgot about it until the doc wrote my prescription.

Please note: While the mouthwash has a cute, consumer-friendly name, it is mixed by a pharmacist according to the prescribing doctor’s specifications. It is not available without a prescription.I’m always searching for ways to ease the discomfort or challenges caused by my Hep C, transplant, medication, whatever. In my experience, people sharing their experiences with others can be as beneficial as a visit to the doctor.

If you’ve experienced similar issues or other problems, please leave a comment and describe how you dealt with it. I appreciate any and all input.

Photo by Mathias Alvebring