Laments of a pill-popper

One down, 21 to go.

When I learned that my insurance no longer covers magnesium, I thought it was a good time to ask Melissa if I still needed to take it. She said I could stop.

My 21 pills does not include the once-weekly solution of Kayexalate, the grainy stuff I dissolve in water to keep my once-high potassium within normal limits. It's not as nauseating as the Exjade I take to lower my ferritin, but it's pretty gross.

Organizing my meds for my trip to Spain, and making sure I have enough plus extras, is a bit of a task.

If I read all the side effects of all my pills, I would probably freak out.

I take several drugs as preventatives because the prednisone inhibits my immune system.

When I saw the infectious disease specialist Dr. Marty on Monday, I asked him, "When can I stop taking the Valtrex (an anti-viral)"?

Answer: "When you stop taking prednisone."

 I already knew what he would say because I have asked before, yet I couldn't help but ask again. Dr. Marty just smiled.

I suppose I would get the same answer to the question, "When can I stop taking the Bactrim (an anti-bacterial used to prevent pneumonia)"?

And "When will little things stop popping up on my hands and face (and tongue) that sometimes turn into skin cancers?"

OK, so, the big question: "When can I stop taking prednisone?"

Answer: When my liver function returns to normal.

Melissa said on Monday that although my numbers were a little lower (a good direction in this instance), they were not low enough to change my prednisone dose.

It's only five mg. a day, down from a high of 20 when I was all puffed up, but still, you can see the effect it has on everything else, including weakening the muscles in my legs.

I shouldn't complain. I am alive and well and going to Spain on Sunday, toting my pills minus one.

Goodbye Voriconozole

What with the slight trauma from last week's "face fry," which, by the way, is now peeling like a bad sunburn would, I didn't get around to mentioning some news from my Dana-Farber visit.

Dr. Alyea and Dr. Marty said they were letting me stop the Voriconozole, aka Vori, an anti-fungal drug I have been taking for more than three years. Anyone who takes a lot of pills knows that it lightens your load to get rid of any of them. This one, taken twice a day, felt especially weighty, tied as it was to the fungal infections I repeatedly got.

It makes your skin especially sun-sensitive and is partly responsible for the dark spots on my neck and face. Last spring and summer I got a lot of sun exposure from dog-walking, running, and, of course tennis, often played where there was no shade. I wore a hat and applied sunscreen, but there's only so much you can do.

Alyea's stated reasoning: "We have to get you ready for outside tennis."

Gotta love that guy.

Back home when I pulled out my bag of pills to put them in their boxes for the week, I took out the Vori and slid it to the end of the table. Woo hoo!

I also got to decrease my dose of magnesium from one pill three times a day to just once a day. I took magnesium for support starting during my hospitalization and just kept taking it. Another sign of forward movement.

But then there's the prednisone, which I won't be able to stop for quite a while. My liver function is better, and I asked if I could go down from 5 mg. a day to alternating 5 with 2.5, which I did once before.  Alyea pointed out that when I did that, my liver got worse again. I know that 5 is a small dose, but I still would like to get off it, which would mean lowering my pill load even more because then I could get off the preventatives Bactrim and Valtrex.

He pointed out that he treats some bone marrow transplant patients who stay on prednisone indefinitely.

And, he reminded me, "This is a long haul."

That was sobering to hear.

I don't think I'll ask about the prednisone again. I'll just be thankful it is keeping the GVHD of the liver in check and that at this low dose, I don't have any of the side effects I had when I took more.