Vasculitis Puns

Hi all,

About two and a half weeks ago I was diagnosed with Cutaneous Small-Vessel Vasculitis and put on prednisolone and hydrochloroquine to treat my skin/blisters. For the first two weeks, when on the full and half dose of prednisolone, my skin was all but back to normal bar some scabs from my blisters. However, just two days into the quarter dose... I'm breaking out again. I'm extremely anxious as this disease has been nothing but painful for me and I'm terrified of breaking out again like I did last time and not being able to sleep/move on account of swelling, blisters and pain.

I plan on calling my doctor/dermatologist tomorrow; however, I'm actually away on holidays and won't be able to physically see them until the 10th; plus, with Easter coming up, I know most doctors will be closed and they may not contact me in that time. In that sense, though I know people here aren't doctors, would it be a bad idea to up my dose back to the half, as it seems to be working, or should I attempt to wait it out over the weekend and see another doctor/wait until I go home? I'm just really upset/anxious as I've had the disease since December and this is the best it's looked since that time. I really don't want to go back to the rash and blood blisters. 😭 I'm really sorry if this against the rules I'm just knee deep in a panic attack over this.

27F, 5'5 130lbs

Note: I have a long history of raging scalp psoriasis (since 11yrs old). I tried every option for it over the years: the shampoos (T gel, T sal, etc), every topical (betamethasone dipropionate, clobetsal propionate, etc), periodical steroid injections into the scalp (over ~2years), phototherapy, otezla (awful side effects), and Stelara. I was on Stelara from July 2019- July 2020. I had no side effects and it totally cleared my scalp. I absolutely loved it but was having some delays getting my Derm to re-prescribe it this past July (when my prescription was up). Interestingly enough, since being off Stelara (now ~9ish months), my scalp psoriasis has barely (maybe every so slightly) reappeared. My scalp looks pretty good, almost entirely clear still. But now I’m dealing with a new awful skin issue….

Note: I suspect I have psoriatic arthritis as well. Starting a few years ago, I have occasional intense wrist pain. My wrists will tense up and become stiff sometimes for hours, days, etc. I have extensive family history of autoimmune diseases (mom has RA, dad has scalp psoriasis - & coronary artery disease).

Note: From September 2020-January 2021, I was going through a very tough breakup and was admittedly under severe emotional distress (on top of unrelated diagnosed depression, which I’ve been taking lexapro for about a year).

Fast forward 6 months:

December 2020: I thought I had athlete’s foot/ fungal foot infection. I had done a foot mask for the first time and thought I may have caught the infection from it (it was some cheap amazon foot mask, but had very good reviews). As soon as I somewhat managed to get my toes under control (mainly that they stopped aggressively peeling, and that the little wound between my 3rd/4th toes on my right side), the leg ulcers started.

January 2021: The first (and still largest) ulcer erupted. Out of nowhere, a very large and painful ulcer appeared on my right lower leg. Here’s the eruption and progression of that initial ulcer. https://imgur.com/a/2GP1JCy. While that ulcer was active, smaller ulcers started appearing on both lower legs, between the ankle and knee. They are very painful, and feel like/are managed similar to a burn (burn dressings have saved me and provided a lot of relief). Smaller ulcers: https://imgur.com/a/4DM0tGW

My Derm did a biopsy from an area on my leg that (at the time) was very irritated, red, hot to the tou

?

My doctor thinks this is what is currently going on with me. Has anyone else experienced this? If so, how did you treat it?

Today is 11 days after 1st shot,

At day 8 I had a strong Covid arm that last 36-48 hours

And today I have tingling and swelling on one toes and yesterday was one finger lasts 12h

Did someone experienced this ?

Does anyone here know if it’s safe to get the vaccine with an autoimmune disease? I specifically have Vasculitis Wegener’s Granulomatosis. I’m not currently on any medication for my condition and have been in remission for about 6 years. At the moment I don’t have a rheumatologist to ask, I scheduled my new patient appointment today but that won’t be until June 18 😖 I would appreciate any information you guys have regarding the vaccine and how it could react with an autoimmune disease. I’m sorry if this question/subject has already been asked.

Any of you guys feel worse when sitting down or driving? When I sit down I get so much pressure in my head that it feels like it’s going to explode trouble talking blurred vision and chest pains and certain limbs like feet feel like they are gonna blow up to? I’ve been dealing with flare ups since around June with some really bad ones as of late and I can’t sit down for shit without feeling like imma die

I have been dealing with leukocytoclastic vasculitis for approximately 2 years. Over that time, I progressively started feeling more and more nerve pain symptoms - starting with tingling and "ice - hot" feelings in my legs. However, in the fast few months this has dramatically worsened to the point where I now get pain, tingling, and weakness in my legs, arms, and feet, and even occasional symptoms on my face and in my chest area. I am on gabapentin to manage the pain, and am going through treatment for the vasculitis with Rituximab. I am also waiting on a TENs machine to arrive, however I am wondering generally if anyone can share advice for coping with the pain or dealing with symptoms. I have to type and work at a desk for my job for ~10-12 hours per day, and typing especially can prove to be difficult during an episode. More than the pain though, I am afraid of the long term impact if this continues to progress.

I am also wondering if anyone else has had neuropathy develop from vasculitis, and if you have any tips or advice. Thank you in advance!

Hi everyone!

I am a 26 year old female and have recently been diagnosed with optic neuritis after blurry vision on my right eye. I first went to an ophtalmologist who also noticed some bilateral retinal vasculitis / retinal vascular sheathing, which was then confirmed by a retina specialist. Thankfully, I've been able to get a brain mri done and the results came back clean, and I've got a lumbar puncture and a spine mri scheduled. My question is, have any of you had optic neuritis, retinal sheathing and clean mri, and how has that evolved for you in the future? From what I've read a clean mri is a great sign, but I've also read that retinal issues are associated with active ms, so I'm really quite unsure about what to expect. I asked the neurologist about the link between retinal sheathing and ms but he said the retina wasn't his expertise.

Sorry if this is not the right kind of post! I just went through 5 days of intravenouse steroids injections and the withdrawal might mess with my mood but I've been struggling a bit with my nerves :( any information about a similar situation is highly appreciated!

Slightly Elevated c4, waiting on next doctor visit, looking for ideas or others with similar symptoms and diagnosis. I’ve already been put on prednisone

Since Jan (so two months ago) I’ve had swelling in my feet noted at my annual physical but written off as not a big deal since had no other symptoms and a standard set of blood work came back normal. So a simple water pill was prescribed.

then the swelling extended to other parts of my body like puffy itchy hands and swollen face, including my tongue which is when I went back to the doctor. Blood work was drawn and I was negative on the ANA test, normal on c3 but high for c4.

Other longer term symptoms: sensitive toes and fingers and sometimes red bumps between digits or blueish toes, pruny finger skin always, some ridges in nails, recent swelling and redness around eyes

I now wait for rheumatologist visit in two weeks and am watching carefully my swelling. I’ve been on prednisone for 5 days and have 5 more to go but swelling continued so I went back on water pill too.

Other misc symptoms: Heartburn; Long time migraine; Tired - but then again I’m a career woman with two young kids so I can’t tell anymore; Allergy like feeling in eyes - taking Claritin

Anyone had anything similar or even just had a elevated c4 blood test and get a diagnosis?

Any tips on how I can enjoy a couple glasses of wine without feeling like shit??? I get so inflamed.

Can the tears that come out not be red, though? It's really hard to avoid getting hit by enemies that explode into tears, so I either evade my own tears like a dumbass or I take enemy tears thinking they're mine.

Tune in to our brand new episode on Vasculitis to review some of the vasculitides you’ll need to know for the boards and the wards. If you enjoy our episodes, we hope you’ll review, rate, subscribe.

Follow us! https://www.instagram.com/spoonfulofsugar_podcast/ for more frequent updates & weekly practice questions.

It was found by an ENT in my blood work and I was referred to a Rhuemotologist and it was labeled urgent. Went to the Rhuemotologist and and he seemed pissed he had to see me and sent me for more testing. The whole time talking to me about things like sleep apnea and diabetes ( I don't have diabetes?!) But wouldn't stayed focused on the vasculitis. He also wouldn't give me any medication until he got the results back. Well the results will take weeks and when I told him this he said I was not "urgent" even though I was told by the ENT I was. I don't know what to do. I'm suffering but I can't get medication or treatment. I wake up everyday almost not able to move. Out of breath. Feels like my throat and sinuses are closing in. I'm in the ER waiting right now but doubt I'll get any help. Is there anything I can do myself or anyone I can see? I don't understand why they keep sending me for further testing but won't treat my symptoms. I went to an urgent care and the Dr. Said to me my condition is above him and that people with Wegeners get put in the ER. He said I should go there if I feel I have to. The people here don't care though and idk who is going to? I'm so pissed I was born an american at this point. It's this endless asking me questions and making me feel like a criminal for wanting them to actually treat me.

From my understanding RV Is a super rare complication of RA. I’m on my way to a diagnosis of RA officially but I’m still currently diagnosed with unspecified arthritis and bilateral Tenosynovitis.

But I’m afraid I’ve been suffering w sero negative RA For years now. My dad passed down his high tolerance to pain gene and I’m afraid I may have not taken my condition seriously enough soon enough.

So My new rheum saw me a couple days ago when my wrists, elbows and knees were deeply bruised (no injuries obvy) And he is finally taking me seriously it seems. (Was only my second time meeting him) he seemed alarmed with the swelling and bruising and pain. The thickness in my hands, new blood vessel formation feeding thickened area in hands, tendons subluxing... no bueno. He muttered under his breath “you’re too young for this”

I’m 33. My symptoms alone would be akin to mismanaged RA For years. Which brings me to RV.

Rheumatoid Vasculitis.... stumbled on it when I was trying to figure out why I was getting hives during some flare ups directly over the worst of my joint pains. And not wide spread... directly over them.

I have nerve damage in the cubical tunnel and the carpal tunnel. I’m always asked if I have diabetes when they do EMGS.

My finger tips have weird numbness and nerve pain. Very different from the deep pain in the knuckles below.

From my understanding rheumatoid Vasculitis affects small nerves and arteries... but often of the Nerves, finger tips, and skin.

Just curious if anyone has any personal experiences or anecdotes with this? Did it get better with treatment? Are you ok now?

I’m trying to prepare myself mentally as I do think I’m getting permanent damage in parts of my body at this point.

Trying to get up the courage to ask my rheum in my follow up in two weeks if I- a 33 yr old, not diagnosed with RA yet- could have a super rare complication of RA that’s usually only seen after a decade or more of the disease?

Hi, everyone. There is a chance that I have vasculitis, but the list of exams I can do is limited due to money and other factors, so I was wondering if I could have your opinion on what exam would suit me.

My symptoms are related to peripheral neuropathy - I have shaky, burning, weak arms and legs. I already did all blood exams I could, none showed sign of autoimmune or inflammatory activity.

Under these conditions, I thought of doing an abdominal angiogram as I also have a pounding abdomen. If you could comment on this, that would also be appreciated.

Anyone else have chronic adult IgA vasculitis? I don't know anyone in my life who does have it and so it has been a solitary road trying to live with IgA.

Most days it's ok; I'm just tired and there are some annoying flare ups of joint pain if I push too hard with my regular exercise. But I always have a baseline small amount of pupura on my legs. Sometimes my arms if I'm extra stressed, even though it goes away quickly. I still scar bad and feel very conscious of it. It's weird because it's not a full remission, but it's far from a real flare up because I thankfully don't have any GI issues or huge pupura rashes. Bloodwork (thyroid, kidney) normal.

I feel like it's too "well managed"/comparatively mild to my 1 true flare up that happened 4 years ago to warrant steroids for treatment (I've already done my rounds with those anyways) but then again am I just constantly doing damage to myself with these small ever-present pupura? I really do want to achieve full remission. Is it even possible? Or is this "mostly ok but kind of always a bit bad" state the best it's going to be for me? What have other people experienced with this?

My dad has AS. In 2019 he had been taking a tnf-a blocker blocker medication called simponi for a couple years to manage the disease. All of a sudden in October, he had an intense episode of pain/loss of coordination combined with what I can only describe as mild delirium. Ever since that day, his brain function has been getting worse and we're now at the point where he is a total care patient in a long term care home. The doctors tell me it's Central Nervous System Vasculitis and that since the immune suppressors they've tried haven't really helped, the damage is done and there's nothing they can do. They also say they don't know where it came from.

Does anyone have similar experiences? Is there a link between TNF-a blockers or AS and brain disease? Any info would help, and sorry if this story is a bummer for you guys.

from September 21 2020 Observer Newsletter

Full Article :

> At press time, Wrestling Observer Live and Pacific Rim podcast host Jim Valley is still in critical condition on a ventilator battling GPA/Wegener’s Vasculitis.
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>His wife, Kari Mollan Valley posted that “I’m tired of ignorant people who say it’s `just the flu.’ I’m tired of hearing, ‘it’s only 196,000 deaths.’ I’m tired of people who don’t believe in universal healthcare. I’m tired of people intentionally gathering in large groups because they want `life back to normal.’ I’m tired of seeing my husband Jim Valley fighting for his life on a ventilator for the fourth time in 25 days.
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> You don’t have a right to intentionally spread germs to those who cannot fight it off. I doesn’t matter what the ailment is. Be a good human and help them stay healthy.

Hi all,

I have a family member who has vasculitis. What it looks like visibly on the skin is patches of red, raised skin that are very warm, hard, itch and hurt. They cause body fatigue among the existing pain. A little speck might appear at some random time and then an hour or 2 later, it grows and moves to another random body part and then it settles and expands. It sucks, to say the least.

I have a family member who has had this since the summer of 2019. A likely result of increased stress and anxiety. Although doctors in the US have been pretty unhelpful. Doing my own research, vasculitis doesn't have a cure... Yet. My family member has been taking prescribed steroids with horrible and draining side effects and even with those meds, we haven't seen any progression.

I've gotten her to take CBD oil daily just starting last week and I'm hoping it alleviates some of the pain even for a short while but my hope is that it just makes the pain go away.

I'm a newbie into the weed world and in my state it's finally fully legalized. I come to reddit seeking help and recommendations on vasculitis.

Does anyone know any specific strains or if THC would help with this issue? Short term and preferably long term. None of the doctors ever mentioned medical marijuana to her. It's all been big pharma stuff which is sad but expected. I just want her to stop suffering.

Thank you.

hello friends,

we have been on the hunt for my mystery autoimmune diagnosis for ages.

My rheumatologist on Friday made some comment about how it was odd my ANCA test wasn't back yet. We had re-run all my bloodwork and I begged her last month to run every obscure test she could think of.

Well, looking up the ANCA test, and uh, yeah, vasculitis might end up being our winner.

I think I prefer SLE, honestly, haha.

I'm not freaking out but I've given in and know this is probably going to end up being positive. I actually had asked about Behcet's disease awhile ago and my doctor chuckled... we are not chuckling now, haha.

I have unexplained sinus issues and inflammation that stumped ENT's, and just about every possible SLE symptom you could imagine. I also have Erythromelalgia and Raynaud's, so, yeah things don't look awesome, haha.

My grandfather also died from an aneurysm :')

So, while I prepare for the worst, I would love to hear about your stories. I'm not quite freaking out, but I had made peace with SLE awhile ago (not diagnosed, blood tests negative, we just assumed SLE was being SLE) and actually started Plaquenil this week. Maybe that still works if the ANCA comes back positive?

I know there are dozens of different diseases the ANCA could lead us towards, so just some general advice would be awesome.

24F, if it helps.

This past week an ENT diagnosed me with vasculitis via a blood test when I went to him for breathing issues. He said I had to be refered to a Rhuemetologist. He kept throwing the word Wegeners around and when I asked him what that was he said it was the old name for Vasculitis. I'm pretty scared as I've been suffering with symptoms for 15 years but was only able to get a diagnosis last week. Is there anything I can do to alleviate my symptoms?