GPA associated rash help

[D.B.]

Hi y'all
I did a quick search here re: rashes and saw several people who had experienced them, but not if they ever eventually went away...completely.
I had 2 infusions beginning of the year and by april felt really realy good. then 2 weeks ago POOF I developed horrible angry red purple rash on thighs arms & chest. rheumy never saw rash like it assoc w GPA but biopsy confirmed it was. as well as ANCA sky high again (1100 units). Back on high level prednisone (was down to 7.5 mg) and scheduling another infusion.
I am just fearful that my skin will be permanently discolored as rash is not red anymore but lt brown.
Any firsthand rash exp most appreciated. thank you

[chris.wg]

Are you on Bactrim by chance? I can't really answer the question about how long the discoloration will last as the rash I got was only about 3 or 4 weeks long. It was heat induced and a reaction to the Bactrim. My old Rheumy took me off the Bactrim without increasing or adding prednisone dosage <I think I was still on pred at that time>. But I stayed out of the sun the rest of the summer and when I had to go out no matter how hot it was I wore long sleeves and long pants and covered up with a hat any thing left exposed had spf 50 on it. Showers were cool showers not hot showers all that like. When I switched doctors this year he wanted me back on Bactrim after I explained the situation he put me on dapsone instead and said if I have bad side affects he will put me on Bactrim again with less frequency if the rash breaks out again there was another option but it involved a hood controlled reperartor treatment and I really would rather not go thru that I already make enough doctor/ treatment visits to just add another. I guess where this ramble is going is are you on Bactrim and in the sun a lot if so see if you can cut it for a bit at the bare minimum and see if that helps. Of course you will want the doctors opinion but this gives you something to go on.

[Alysia]

Hi Dina.
I am sorry for you I hope that elevating the pred and the IV (rtx? ) will help you get through it asap.
I dont know much about the rash. I saw some pics of it here : Vasculitis: More Common Than You Think. More Serious Than You Know. (group on fb)

please update us how are you

[D.B.]

Are you on Bactrim by chance? I can't really answer the question about how long the discoloration will last as the rash I got was only about 3 or 4 weeks long. It was heat induced and a reaction to the Bactrim. My old Rheumy took me off the Bactrim without increasing or adding prednisone dosage <I think I was still on pred at that time>. But I stayed out of the sun the rest of the summer and when I had to go out no matter how hot it was I wore long sleeves and long pants and covered up with a hat any thing left exposed had spf 50 on it. Showers were cool showers not hot showers all that like. When I switched doctors this year he wanted me back on Bactrim after I explained the situation he put me on dapsone instead and said if I have bad side affects he will put me on Bactrim again with less frequency if the rash breaks out again there was another option but it involved a hood controlled reperartor treatment and I really would rather not go thru that I already make enough doctor/ treatment visits to just add another. I guess where this ramble is going is are you on Bactrim and in the sun a lot if so see if you can cut it for a bit at the bare minimum and see if that helps. Of course you will want the doctors opinion but this gives you something to go on.

Hi and thanks for your response. No I'm not on bactrim, but rheumy wants me to start back up. I was on it from 11/13 - 2/14. Dermatologist thought perhaps related to sun exposure due to the areas affected, but couldn't explain why didn't affect my face. I'm using strong topical steroid, which is helping. Also no hot showers and long sleeves and pants. It's super humid here today and high 90's.

[D.B.]

Hi Dina.
I am sorry for you I hope that elevating the pred and the IV (rtx? ) will help you get through it asap.
I dont know much about the rash. I saw some pics of it here : Vasculitis: More Common Than You Think. More Serious Than You Know. (group on fb)

please update us how are you

Hi sweet Alysia. thanks for your concern. I just scheduled rtx infusion (will be in a couple of weeks). I feel good just look bruised and beat up...which is lovely with my saddle nose lol
I haven't been to the site in a while, so I have some reading and catching up to do. I've been going on many interviews and looks like I will have a new job soon.

[chris.wg]

I was told the Bactrim caused my sun reaction and when I was off it is when it faded so that may be the issue for you.

[Alysia]

Hi sweet Alysia. thanks for your concern. I just scheduled rtx infusion (will be in a couple of weeks). I feel good just look bruised and beat up...which is lovely with my saddle nose lol
I haven't been to the site in a while, so I have some reading and catching up to do. I've been going on many interviews and looks like I will have a new job soon.

welcome back nice to have you around, although I am sorry that you have some tough time
I think that you should schedule the rtx earlier, in fact, ASAP.

[whatthewhat]

Hey there, my daughter had rashes (a few different types) really badly at the time of her diagnosis -literally head to toe, and to the point where her ANCA biopsy was done on her skin. Besides the area of that biopsy, there are no traces left ( a bit more than a year later.) She is a teenager, and I am convinced pediatric Wegener's has some differences than adult-onset, but as far as rash remnants go, I thought this might be hopeful for you to hear.

[D.B.]

Hey there, my daughter had rashes (a few different types) really badly at the time of her diagnosis -literally head to toe, and to the point where her ANCA biopsy was done on her skin. Besides the area of that biopsy, there are no traces left ( a bit more than a year later.) She is a teenager, and I am convinced pediatric Wegener's has some differences than adult-onset, but as far as rash remnants go, I thought this might be hopeful for you to hear.

Thank you...yes...it's very encouraging and hopeful to hear. Must have been so hard for your daughter to deal with.

[LisaT]

I was going to start a new thread this morning but this one is right on point... I thought I'd been bitten by Mosquitos yesterday when dropping off my son at soccer camp on a field full of bugs. I got so itchy I couldn't help scratching my legs like crazy. Bought some afterbite (itch/bite cream) and put it on andd forgot about it until later. Then I saw my leg--the area that was the most itchy had ugly, raised purple splotches that look like they could be purpura. I took some photos and happen to be scheduled to see rheumy today so I'll see what he thinks, if I can even get him to look. He doesn't usually actually examine me or have me put on a gown, just chats with me in his office at his desk and checks out my hands. (?). I've had hideous purple veins and been bruising very easily for some time now, but this is the first time it has seemed like a rash or skin condition. I'm totally bummed. This and the hair loss are the only two visible signs of the disease and for some reason (vanity?) they hit me very hard. I was in tears over this one last night. I used to have nice legs. Now I hate having to wear shorts or a bathing suit. Such a small problem in the grand scheme of things, but I can't help feeling sad about it. Oh, well, maybe it will get better. I'm worried that it's just another sign that my disease is not under control.

D.B., I hope your skin gets better with your infusion. It sounds hopeful that it will. Asking for it sooner as per Alysia's suggestion sounds like a good idea.

I have one question, if others have purpura or other rash from the disease, does it itch or did it start out with itching? I know this can happen from RA, which I may or may not have (could have been misdiagnosis of GPA or I could have both, hard to know). I'm also wondering if I did get bitten by Mosquitos and bruised from scratching them as I've been bruising very easily due to the prednisone. Argh.