GPA associated rash help

[D.B.]

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.

Hi Lisa...big hugs to you. wondering how it went w rheumy visit yesterday. my rheumy same doesnt examine me much but asks relevant questions and listens well to my concerns. when he saw my rash he immediately said he was referring me to dermatology. its teaching hospital so usually interns join in for audience nut its cool cause i figure they may be able to recognize GPA symptoms better and help someone else.
My rash did not itch at all until after using steriod cream which dried out skin.

I so much sympathize with you and "vanity" issues. i dont like people knowing that i hsve a disease so when there is evidence if it that others can see it does get bit sad. my poor nose has been through alot and it definitely shows. prednisone gave my hump on neck and moonish face and stupid ravenous appetite which i need to reign in as being overweight just doesnt help. so add crazy rash and i felt lkke big mess. what saves me is my positive nature and sense of humor.

[JeanMarie]

DB--well if they biopsied the rash I guess you can feel confident that it is wegs. I can tell you mine went away with RTX--no scars or anything left. I was on 60mg of pred when I broke out--I was surprised because I thought that much pred would have prevented it--no such luck. No itching at all, I just looked at my legs & there it was. 2 days later I had my 1st scheduled RTX. I don't remember how long it took to go away. Hope this helps!!

[Alysia]

Hi Lisa.
how are you today ? how is your rash ? don't worry it will disapear and you will be able to go with shorts

[D.B.]

DB--well if they biopsied the rash I guess you can feel confident that it is wegs. I can tell you mine went away with RTX--no scars or anything left. I was on 60mg of pred when I broke out--I was surprised because I thought that much pred would have prevented it--no such luck. No itching at all, I just looked at my legs & there it was. 2 days later I had my 1st scheduled RTX. I don't remember how long it took to go away. Hope this helps!!

Yes thank you JeanMarie...it definitely helps! Happy for you no scars or remaining evidence. Crazy disease is unpredictable and contradictory to rational thought process. Anxiously awaiting RTX. Clinic is small and I was fortunate to get in earlier due to cancellation.

Hi Alysia

[LisaT]

Sorry I haven't gotten back to this thread. Forgot to answer! It turns out I do not have purpura. I think I bruised myself by scratching the mosquito bites because I'm bruising so easily due to the prednisone. Yikes! So tears for nothing. Not nothing, I guess I needed to cry. It happens. thanks for your support.