Took some prednisone today...

[delorisdoe]

Yup. Had a ton left over from last time it was prescribed as he admittedly can't count. It is not old or expired. I have what is called a pyoderma gangerosum and it is the most excruciating pain ever. I reached my limit and took 50mg voluntarily. I will take it until it runs out. I hate prednisone but I hate this so much more...

[me2]

It sounds just terrible. Please to be sure to also see your Dr about this. Perhaps some of the other therapies could help you and also you don't want to run out of pred if you still need it.
Just from a quick search I see that some people take medical marijuana for the pain. I hope it gets better for you soon.

[delorisdoe]

I went to family doctor today as the nurses that dress it feel it's infected. The prednisone is for the pyoderma but he gave me too much. I don't know how to explain the pain.

[Jaha]

I'm wishing you fast relief from your pain and suffering. Do you also have to take any antibiotics for that, it sounds really painful, where is it located?

[me2]

In my little search on the subject I saw that anti-biotics are some times used for the pyoderma. I would think this would be true especially if there is possible infection.
I did read also that sometimes the pyoderma itself is sometimes confused with an infection and apparently it is not. It just sounds very difficult to deal with.

[delorisdoe]

In my little search on the subject I saw that anti-biotics are some times used for the pyoderma. I would think this would be true especially if there is possible infection.
I did read also that sometimes the pyoderma itself is sometimes confused with an infection and apparently it is not. It just sounds very difficult to deal with.

My my husbands boss has one. They spent the first month treating it as a brown recluse spider bite! Miss diagnosis at its worst. You need to be gental with a pyoderma and keep it moist to heal it. They sucked the venom that was not there out with a venom sucking machine and he underwent 4 surgeries to grind away skin. They mad it really bad and he was close to losing his leg. I told him it looked like mine and to get his but to a proper teaching hospital ear where they will want to figure it out. 24 hours later =no spider bite!

[delorisdoe]

I got some antibiotics today as they believe it is infected. I have had it for over a year now. It was getting better but they change treatments as it progresses and unfortunately, some treatments they try make it worse. Also, I see different nurses all of the time and each time I have to tell them I have an auto immune disease and that it is part of the reason not only that I got this but also that it is slow to heal. "Oh, they say, yes that does slow it down. " is it lupus? When I tell the, it is wegeners or gpa they nod but have a confused look on their face. They have not heard of it.

It takes about four hours after a dressing change for the pain to decrease to a 6-7 out of ten. I am officially sick of this!

[delorisdoe]

And it is on my right shin.

[Treesie]

In 1992 I had a fever of unknown origin along with headache, night sweats, aching from head to toe, and a weird tightness in my throat. Every test came back negative. After six weeks I suddenly started feeling better, except for lingering sinus issues that have been with me ever since.

A few times over the years these same exact symptoms would hit me out of the blue, sometimes for a week or two, sometimes for a couple days, sometimes for just a few hours.

I have no doubts that my disease started in 1992, but it took 20 years and almost dying of it to get a diagnosis. The doctors would point to allergies, virus, sinus infection



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[annekat]

I have no doubts that my disease started in 1992, but it took 20 years and almost dying of it to get a diagnosis. The doctors would point to allergies, virus, sinus infection
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This is a great example of what happens to a lot of us, whether it takes 20 years, 5 years, or whatever. I'd guess it started a lot earlier than we think for a lot of us. It's hard to pinpoint it because a lot of people have allergies, sinus infections, etc. It's very scary when people are hit hard and fast, as some are, but more insidious when it takes several years or 20 to progress to that point.