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]

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.

[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!

[me2]

Wow. While I was reading up on it I saw one reference to someone having luck using drawing salve (ichthammol). This is something I recently discovered for my own use. There are some anecdotal stories that make it sound pretty miraculous for a variety of conditions. ichthammol Misc Reviews and User Ratings: Effectiveness, Ease of Use, and Satisfaction (http://www.webmd.com/drugs/drugreview-13555-ichthammol+Misc.aspx?drugid=13555&drugname=ichthammol+Misc)

I was so impressed by what I read about treating infection with it that I got some to keep on hand. I have only used it once for a deep sliver but it did work on that over night.
If it were me I would ask my doc if it was something appropriate to try. It sounds like there are not any sure fire regular pharmaceutical treatments.

[annekat]

Hi, Leigh. Sorry to hear about this problem and the pain. Sounds like a lot of ideas out there you can try. I always think it's good to have some extra pred around for emergencies. I hope the antibiotics help and that we hear a report of improvement from you. :hug2:

[Alysia]

Hi. After our chat yesterday, I thought I will also share here my thoughts.
When I was 17 yo, I had "atypical arthritis" (it is always the "atypical"... ) with weired wounds on my legs, like ulcres, big as a coin. It took long time to heal. Months. And it was connected to the onset and healing of the "arthritis". I think that It was a wg flare, not diagnosed. Then I was in free drugs remmision for many years and then smoldering for years without diagnosis untill the acute flare that almost killed me. I think that wg can have many manifestation and/or we might have together with it another weired and rare auto immune disease. I have also colon involvenent. My gastro doc said that its wg but he also said that it can be another AI disease, but that it doesnt matter because the treatment is the same and should help both. And here I am getting to the point: all the years I had scars from the wounds. But after first round of rtx the scars disapeared. This leads me to the conclusion that it was wg or any AI disease activity.
Bottom line: I think that you need to get treatment for wg (pred is not enough) and I think that it might help the ulcer.
And as I told you, my sweet dr. Phil is in charge from above now, so he will help you....
Please update. Hugs ♡♡

[annekat]

This link was interesting, though you all may already have seen it: Medscape: Medscape Access (http://emedicine.medscape.com/article/1123821-overview)
It suggested a relationship of this to systemic diseases although it made a distinction between this and similar ulcerative skin conditions due to vasculitis and others. It suggested an imbalance in the immune system as a cause, and corticosteroids, antibiotics, immunosuppressants, and biologics as possible treatments. A little confusing as to why it would suddenly pop up, and it was the only article I read.

Alysia, I agree with your idea that some of our weird systems a lot earlier in our lives could be related to smoldering WG. I didn't have anything as dramatic as your skin ulcers, but I did have some weird tinnitus and ear pressure about 8 years before my big WG ear infection and about 10.5 years before actual diagnosis. Before that, in my childhood and early adult years, I had a lot of bronchitis and asthma, at least partly triggered by allergies, and I know that isn't uncommon, but no one else in my family had it, so I wonder.

[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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[Treesie]

Got cut off!

Sinus infection, but they never really knew what was going on. It took nearly dying for me to get a diagnosis. Funny thing too, every time I was put on short term prednisone for another condition I would feel better than I had for years. This clue was also pooh-poohed when I brought it up to the Docs.

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[Pete]

This clue was also pooh-poohed when I brought it up to the Docs.

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Hence, the importance of seeing a doctor who is well-experienced in treating GPA/Wegener's...

[annekat]

Docs are so good at pooh-poohing things. It's like their motto is, "when in doubt, pooh, pooh". Yes, we all need good docs who are experienced with WG and will listen to us when we describe what is going on and even if we have our own theories about it. We also need ALL docs to stop putting this disease, and others of similar rarity and characteristics, back into some corner of their mental filing cabinet. Even the docs who are not specialists, whom we might be seeing for other reasons, should be able to talk to us about it and support our efforts to understand what is going on in our own bodies.

[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
Sent from my XT830C using Tapatalk 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.

[delorisdoe]

2220It hurts

[annekat]

Ugh, back on topic.... it really looks awful... shanks for sharing the pic. Makes me want to look back at what I already researched and read it again. Best of luck in getting rid of that.

[Alysia]

2220It hurts

It looks like Auto Immune ulcer. I saw some like that when I went to get my rtx. They got treatment like ours. How was your appt ?

[delorisdoe]

Some very fun news...it has gotten much worse since this picture. One idiot Doctor is somewhat to blame. Also these ulcers sometimes just get worse rather than better. I now have a wound care doctor so this is good. I see my weg Doctor again in May and he said if it is not better by then we will look at immune suppressing drugs. It has gotten worse since then. Yippee. The wound doctor gave me a prescription for the nerve pain thank God. Now it just hurts a lot but I no longer feel lik I am being electrocuted every 3 seconds. I am now at a comfortable 7 out of 10 on the pain scale!

[annekat]

Thanks for sharing, Leigh, and I'm dismayed that it has gotten much worse. Waiting until May? I don't understand why they don't treat it more aggressively now. I'm glad you at least have a special wound care doctor and something for the nerve pain. But I don't understand why they'd be dragging their feet on this. You'll be in my thoughts, and please keep us posted.

[debra]

Leigh, good luck! It looks very painful... I'm with Anne here as to why he has you waiting until May? Nevertheless, good luck again... Debra...

[delorisdoe]

I now have three doctors on it. One useless one. One amazing one and then my wegs Doctor will see me in May. I have the option of seeing him sooner if needed.

[Pete]

Try to get into your wegs doc ASAP. That wound looks really nasty! You owe it to yourself to get competent treatment for it!

[annekat]

I'm glad you have an amazing doc working on it and can see your WG doc sooner than May if need be!

[debra]

Hey, Leigh, I think you're useless doctor,moon lights up here? Haha... I think he's got lots of similar friends too, and they all work up here... Leigh, good luck, and I hope you get in a lot sooner! Debra...

[Alysia]

Hi. I am sorry.. after our last chat on fb I hoped that you are recovering.. I think its time for serious treatment. Maybe also biopsy ??

[delorisdoe]

Hi. I am sorry.. after our last chat on fb I hoped that you are recovering.. I think its time for serious treatment. Maybe also biopsy ??

He biopsied it today. Took out four pieces. We shall see. Much like biopsies for wg ones for pyoderma are often inconclusive.

[delorisdoe]

As much as I appreciate the likes on this one him cutting for chunks out of my ulcer was not pleasant! :smile1:

[annekat]

I'm sure it was very painful and continues to be. I hope that the biopsy samples reveal something helpful and conclusive. You have been dealing with this too long. They need to find a way to treat it, whatever it is. I know, easy for me to say. Best wishes and luck to you.

[debra]

Leigha, good luck with getting this resolved, it looks very painful! Are they saying if its part of wegeners? I'm curious what they are saying could cause it, ect. Anyway, good luck again! Debra...

[Alysia]

As much as I appreciate the likes on this one him cutting for chunks out of my ulcer was not pleasant! :smile1:

The likes are because finally the dr. Is doing what he should do long ago. I am so sorry for your pains. I hope the results will lead to the right treatment and healing. In my humble opinion, rtx can deal with it. Please update us. Keeping you in my prayers.