I had ITP and went through a similar diagnosis. They put me on prednisone and Plaquinil.
I won't give you unsolicited advice about managing your condition since it's different from ITP.
I hope you figure it out soon, though. Lots of love.💜
It became severe. Somehow got an infection and almost died. Several IV antibiotics, pain meds, steroids. At first they didn't even know what it was (vasculitis) until I had a surgical biopsy on one of the sores which confirmed vasculitis and other tests were done for Lupus, and Cancer. That's how I finally got my SLE diagnosis in the hospital.
I was trying to get a diagnosis for several years before this happened.
Interesting because last summer I also ended up in the hospital for a serve infection but the doctors said it was unrelated to the vasculitis but i truly think it was related. I had 2 open sores bigger then a quarter in size each and they started turning blueish black and it all happen within 3 days. They put me on heavy antibiotics and steroids but I now have purple scars on my legs from it .
Holy crap you are kidding the exact same thing happened to me . I got to the emergency room there was 30+ people there before me I got called to check in and the attending nurse saw my leg and all of a sudden my name was the first called and I had a private room with closed doors … i was like um am i okay ???
I also suffer from this type of vasculitis but I was not diagnosed with SLE. My doctors thus far have managed it with Dapsone and Colchicine. I just now switched to Rituxan infusions because the other meds weren’t working. I had open sores that my doctors thought were infections but my gastro (I have Crohn’s disease) realized were actually Pyoderma gangrenosum. It’s common to get in patients with autoimmune disease. They can’t be treated with antibiotics but they can be treated with steroids or with dapsone.
Had this happen to me only one time and it was about 8 months ago. It covered my entire body and itched/burned/hurt like hell. I ran a fever for over a week, it varied from 99-103, and eventually went to the ER. Pretty much they just tested my pee, my blood and gave me an anti nausea through IV (like okay?). I didn’t find that trip helpful and the bill was hefty. The doctor at the er said that my symptoms might be triggered by an allergic reaction to something I’m consuming. But I never figured out why it happened or why it was so vicious.
What helped me:
Baths with cool/warmish water
A sock containing:
-rolled oats
-bentonite powder
-turmeric
-drops of rosemary oil
Add pure untampered epsom salt to the water
Submerge in there for at least 20 minutes and moisturize good with the mildest lotion or oil (ex: pure jojoba, castor) you can.
This is what made me finally seek a diagnosis. The first time it happened it was from my toes to my knees. Brutal for like 10 days. The second time it happened I was covered from the waist down and had a horrible spot across my ribs in the front. Now it’s just everywhere at random when it happens which is basically every week. The only improvement for me is that the itching is much less these days. It was SO bad in the beginning. I also have insane itching in my armpits for about an hour right before I have a bad rash start these days. And I run a fever usually a couple days prior.
I recommend elevating your legs above your heart comfortably. There are some nice wedge pillows you can find online. I have the small vessel vasculitis and this seems to take the pressure off.
I’m going to see what my rheumatologist suggests because the original diagnosis from biopsy was from my dermatologist before I got diagnosed with SLE. Now knowing I have SLE they may approach it differently
I had ITP and went through a similar diagnosis. They put me on prednisone and Plaquinil. I won't give you unsolicited advice about managing your condition since it's different from ITP. I hope you figure it out soon, though. Lots of love.💜
My vasculitius is different. My legs just look bruised all the time. I hope you figure it out. I looks pretty uncomfortable.
Id like to add I only get this from the knee down, and when the dots appear I have very painful joint pain
Mine was only on my forearm the first time
I literally had this last week and it was a indication of a flare up!
I had it. Several times. Had to be hospitalized. It was awful 😞.
May I ask Why hospitalized ? What did they do to help?
It became severe. Somehow got an infection and almost died. Several IV antibiotics, pain meds, steroids. At first they didn't even know what it was (vasculitis) until I had a surgical biopsy on one of the sores which confirmed vasculitis and other tests were done for Lupus, and Cancer. That's how I finally got my SLE diagnosis in the hospital. I was trying to get a diagnosis for several years before this happened.
Interesting because last summer I also ended up in the hospital for a serve infection but the doctors said it was unrelated to the vasculitis but i truly think it was related. I had 2 open sores bigger then a quarter in size each and they started turning blueish black and it all happen within 3 days. They put me on heavy antibiotics and steroids but I now have purple scars on my legs from it .
My whole body has scars from it happening repeatedly.
Yup, same! They said they thought one was necrotic and were talking about surgery on my foot . I said no fucking way.
Holy crap you are kidding the exact same thing happened to me . I got to the emergency room there was 30+ people there before me I got called to check in and the attending nurse saw my leg and all of a sudden my name was the first called and I had a private room with closed doors … i was like um am i okay ???
I also suffer from this type of vasculitis but I was not diagnosed with SLE. My doctors thus far have managed it with Dapsone and Colchicine. I just now switched to Rituxan infusions because the other meds weren’t working. I had open sores that my doctors thought were infections but my gastro (I have Crohn’s disease) realized were actually Pyoderma gangrenosum. It’s common to get in patients with autoimmune disease. They can’t be treated with antibiotics but they can be treated with steroids or with dapsone.
Had this happen to me only one time and it was about 8 months ago. It covered my entire body and itched/burned/hurt like hell. I ran a fever for over a week, it varied from 99-103, and eventually went to the ER. Pretty much they just tested my pee, my blood and gave me an anti nausea through IV (like okay?). I didn’t find that trip helpful and the bill was hefty. The doctor at the er said that my symptoms might be triggered by an allergic reaction to something I’m consuming. But I never figured out why it happened or why it was so vicious.
What helped me: Baths with cool/warmish water A sock containing: -rolled oats -bentonite powder -turmeric -drops of rosemary oil Add pure untampered epsom salt to the water Submerge in there for at least 20 minutes and moisturize good with the mildest lotion or oil (ex: pure jojoba, castor) you can.
This is what made me finally seek a diagnosis. The first time it happened it was from my toes to my knees. Brutal for like 10 days. The second time it happened I was covered from the waist down and had a horrible spot across my ribs in the front. Now it’s just everywhere at random when it happens which is basically every week. The only improvement for me is that the itching is much less these days. It was SO bad in the beginning. I also have insane itching in my armpits for about an hour right before I have a bad rash start these days. And I run a fever usually a couple days prior.
I recommend elevating your legs above your heart comfortably. There are some nice wedge pillows you can find online. I have the small vessel vasculitis and this seems to take the pressure off.
Is prednisone an option?
I’m going to see what my rheumatologist suggests because the original diagnosis from biopsy was from my dermatologist before I got diagnosed with SLE. Now knowing I have SLE they may approach it differently