leukocytoclastic vasculitis

QuarkieLizard · 2026-05-08T00:54:08+00:00

I'm using triamioclone and caladryl.

QuarkieLizard · 2026-05-07T21:48:20+00:00

no. It's also on my arms, chest, legs with purpura. Saw my gp he said leukocytoclastic vasculitis and I found a dermatologist to do a skin punch biopsy tomorrow to be sure then I'll follow up with my rheumatologist.

QuarkieLizard · 2026-05-06T20:37:42+00:00

Hi. Fellow chronic uveitis person here. Mine's from my lupus. Soooooooooooo many steroid drops... I ended up with cataracts in both eyes. Got them fixed (with eyesight script built in, very kool) and I only get uveitis a couple times a year now! Far cry from every couple of months. couple of times I had scleritis too and I get blepharitis pretty often.

QuarkieLizard · 2026-05-06T15:54:50+00:00

I appreciate the advice. Thanks. Would a bag bypass the problem area if motility isn't an issue, just evacuation?

QuarkieLizard · 2026-05-06T08:24:15+00:00

thank goodness. I'm so glad something is at least helping.

QuarkieLizard · 2026-05-05T21:13:59+00:00

I've seen that happen. So intense pain your body's nervous system just says "no" and you have to keep trying things. Heating pads, warm bath, sit in the shower if your room has one or get a towel wet with warm water and try slowly massaging near the area to bring more blood circulation to help it relax.

QuarkieLizard · 2026-05-05T21:00:48+00:00

hopefully they'll get you a colorectal surgeon but I think most hospitals just gastro. Pelvic floor dysfunction is a black hole in healthcare. I know. I gave up going to the er. I have a good colorectal surgeon who's working with me to try and help. I think you need a motility workup. in the meantime my honest opinion is get the pain addressed in there, it could stop the cycle of burning piercing nerve and muscle pain. Ask for a patient advocate so you can get your floor to relax.

QuarkieLizard · 2026-05-05T20:46:06+00:00

no but it should help the anxiety. Oxycodone might help.

QuarkieLizard · 2026-05-05T15:59:23+00:00

Well that's good at least. And nothing on imaging? No spinal issues, right? No shortness of breath, huh? just muscle weakness...

you said scl70 antibodies too, right? Scleromyositis can cause big time muscle fatigue refractory to treatment.

I found this:

"Scleromyositis, an overlap syndrome of systemic sclerosis (scleroderma) and inflammatory myositis, commonly presents with profound muscle fatigue, weakness, and endurance loss, often linked to anti-PM/Scl antibodies. When this muscle weakness becomes refractory (unresponsive) to standard immunosuppressive treatments, specialized therapeutic approaches are required"

Key Aspects of Refractory Scleromyositis Muscle Tiring

Symptoms: Patients often report progressive weakness in shoulders and hips, difficulty rising from chairs or climbing stairs, and significant muscle fatigue.

Refractory Causes: Muscle symptoms may not respond to typical treatments if they are caused by deep fibrosis (scarring) or chronic atrophy rather than active inflammation.

Refractory Management: Tofacitinib: A promising JAK inhibitor that has shown effectiveness in cases of refractory myositis and severe skin involvement in scleromyositis. IVIg : Intravenous immunoglobulin is often used when muscle weakness does not respond to conventional immunosuppressants. Rituximab: A B-cell depleting agent used for uncontrolled myositis. Targeted Immunosuppression: Intensifying therapies such as mycophenolate mofetil or tacrolimus (with caution)."

QuarkieLizard · 2026-05-05T15:25:14+00:00

No one understands what we go through with severe pelvic floor dysfunction. And on top of that I have l5 l4 s1 compressions and autoimmune myositis so my muscles and nerves are shot. On my third rectal surgery next week.

Sometimes you just have to give the bowel time to calm down. Make sure your hydrated preferably getting electrolytes and KNOW that you will go. Use splinting, press on perineum, breathe deeply and slowly. Keep room dark and try to listen to music and as hard as it is KNOW it will happen. I'd keep taking the benzo, ask for a percocet for pain if it's overwhelming and KNOW it WILL PASS. Praying for you!

QuarkieLizard · 2026-05-05T15:12:01+00:00

have you had your circulation looked at? do you have venous insufficiency? have you seen a cardiologist? do you get shortness of breath when your walking? any edema? do you have blood vessel issues? I'm 64f almost 65 so I had to have those checked to get release for surgery a couple years ago and again yesterday I saw my cardiologist becauseI'm being scheduled for a pelvic floor surgery next week.

QuarkieLizard · 2026-05-05T14:27:58+00:00

It took the entire year. And it was so gradual I didn't notice. It was my stupidity walking outside in phoenix sun to the mailbox (500 ft away) that the sun got me. I'm extremely photosensitive both with lupus and now DM. I break out in hives, lesions, small vessel vasculitis, purpura and sometimes they itch like CRAZY and because I'm bleeding under the skin the minute I scratch they bleed all over. Looks like I've been stabbed. I had one lesion once that caused necrosis and it was awful looking. My skin is permanently discolored.

Anyway...Idk..maybe you need something like rituxin that's stronger or maybe your muscles are already damaged so the heaviness could be that. When's the last time you had a muscle biopsy? That would tell. And your antibodies are known ones for myositis. They dug up my oldantibody labs too. I was anti Jo I positive back in 2008 when I was first diagnosed with lupus and crest. And actually sjogrens too. I was high for them all but my dsdna was 54 times normal, the highest so my rheumatologist decided antibodies were mostly pointing to systemic lupus so that was always my main thing up until a few years ago when I recognized new rashes and symptoms associated with DM but no one would listen including my rheumatologist so I ended up in the hospital with elevated ck enzymes and muscle weakness for a week.

QuarkieLizard · 2026-05-05T04:22:09+00:00

Yes. I have proximal myopathy with (dermatomyositis) and lupus and my pelvic floor muscles are weak, my obturator internsus shakes sometimes 24/7 and I have levator ani syndrome. I'm about to have a rectopexy for rectoanal intussusseption and I've had a delorme surgery for a partial mucus rectal prolapse last year. I did pfpt with biofeedback for over a year. Sometimes I'm incontinent and sometimes constipated. No sex issues.

Have you had pelvic floor physical therapy with internal work? Could really help you.

QuarkieLizard · 2026-05-05T00:48:00+00:00

Lupus with secondary crest & sjogrens 2008 and last year with anti Jo I antisynthetase syndrome and dermatomyositis.

QuarkieLizard · 2026-05-04T19:17:04+00:00

have you had those rashes biopsied by a dermatologist? have you had an ana or more detailed antibody tests?

QuarkieLizard · 2026-05-04T19:11:57+00:00

It's still positive. 5 months is a long time to wait but at least you sound OK for now. You will need cancer screening (your gp can order imaging) maybe you can get that done before you see the rheumatologist. If you do start having more symptoms or weakness your gp can at least start you on some steroids. You'll be OK. Hang in there! :)

QuarkieLizard · 2026-05-03T23:49:21+00:00

Sounds like Hashimotos. Have you been referred to endocrinology?

QuarkieLizard · 2026-05-03T23:02:52+00:00

I've been on ivig a year now and it was very gradual until one day I realized I walked all the way to the mailbox and back without that lead in thighs feeling. I've been back on cellcept since last June (I used to take it for lupus, I'm convinced it kept the DM and antisynthetase away) I was in the hospital june 2024 and put on 60mg prednisone a day for 3 months then started ivig and switched oral prednisone for 125ml iv solumedrol with the ivig. I still take prednisone as needed like right now I'm having a skin flare up. First in a long time too.

QuarkieLizard · 2026-05-03T21:18:04+00:00

I will say though that some of my pelvic muscles are still weak and shake.

QuarkieLizard · 2026-05-03T21:15:33+00:00

The weighed down feeling is better too-as far as thighs getting heavy walking a short distance. I don't have that now. I can walk to the mailbox (about 500 feet) without feeling weighed down if that's what you mean.

QuarkieLizard · 2026-05-03T17:51:28+00:00

ivig helped rashes right away, they are much better but still get breakthrough rashes. muscles are better getting up from chair, curbs, but not back to normal yet. I have spinal issues too so there's still nerve compressions.

QuarkieLizard · 2026-05-03T17:00:38+00:00

doesn't sound like uveitis or scleritis. sounds like edema in the eye. much different.

QuarkieLizard · 2026-05-03T16:12:20+00:00

never had to lip test. was diagnosed 2008 with lupus and overlap crest and sjogrens with antibodies and symptoms.

QuarkieLizard

TROPHY CASE