Monday, October 24, 2011

Predni-Oh nooo-sone

In November I'm going to 'celebrate' my 4.5 year Prednisone anniversary. And by celebrate I mean commiserate on the fact that I'm *still* taking it. And don't have twin 4 year old little girls. And haven't gotten well enough to write the next chapter of my life.

I started the drug at a fairly high dose and those first two weeks were like a dream. You would never have known I was sick. I felt so good my then GP told me to drop off the drug. That was mistake #1, I should have weaned.

I woke up unable to uncurl my hands (again!) and unable to bear weight on my legs. But, it was worse because it HURT all over. I now know that was the body's reaction to weaning immediately from a high cortisone supplement. It feels like you're wringing out a wet cloth. That twisting and burning is in your muscles.

So, that began my continuous supplementation. I've been on all kinds of doses, all kinds of methods (injection being the least favourable) and weaned more times that I care to count.

I'm currently sitting at 5mg and the desire not to wean is so strong I refuse to raise the dose to help this hip. Not gonna do it.

One of the side effects that gets mentioned but doesn't really gain much notice is the small infection abundance. Everyone knows Prednisone lowers your immunity and you get sick more often, but you also get icky infections.

My toes are a bit of a mess to begin with in that they grow nail that don't stop at the sides of my toes and that creates little nicks and pain. I manage by clipping the nails.

I noticed a little lump on the side of my big toe. It didn't hurt so I thought it was bit of excess skin or nail.

I got more curious as the days passed and got some tweezers in there to discover that the lump was a little well of green pus. I cleaned it out and gave it a thorough washing with soap and water.

As the days went on, the skin started pulling back and so I got the tweezers again. This time, the skin peeled away, removing nail with it. Suddenly, there was no skin, no nail and no nail bed. Just big, raw, red toe!

Eeek! I cleaned it, I wrapped it, it hurt!

I took Soph to the beach a couple weeks ago to help with her cough and walked around in the salt water. But that evening more nail came off. There was some nail bed there at least.

In the morning the rest of the nail was completely hanging off and there was green everywhere. I kept it clean and dried and when I saw the GP about my hip, I showed him my toe. Oh, he said. Yes, you get things like this on Prednisone.

Small infections that come about with delayed healing. Nothing big, and the nail bed will regrow.

I got some fancy antibiotic oil based ointment that took care of the infection, but the healing is slooooooow. The cuticle finally fell off this morning. It was hard and stiff like old fashioned plastic.

I think it will be a while before I get to have stylish, colourful toes for summer. is a new micro blog for people to share their experiences on Prednisone. Mine hasn't been too bad, really.

This is my first slow healing infection in 4.5 years and it's probably been my best year on the drug in the whole run.

It can be managed, life on prednisone, and while it's not considered the best option, you can live on the drug long-term.

Once you find a stable dose, stay there. That rollercoaster of highs and weaning is so hard. And it hurts. If you don't want to raise your dose, you don't always have to. Doctors have NO idea what weaning down is like, so make sure you advocate to your best ability, however, there will come a time when you have to, irregardless of your feelings about it.


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