Horrible vasculitis - I need advice

I was diagnosed with lupus about 25 years ago (I was 14). Had no major issues until recently. I developed Sjogrens, Raynaud's and just sickly in general (yeast infections, sores in my mouth, feverish, etc). About a year ago I started getting vasculitis. It was infrequent first - had an outbreak every other month. The last year it has gotten much worse. By 6:30pm my legs are throbbing (feel like my calves are sore), the bleeding slowly starts and my ankles start swelling. I need to be horizontal by 8pm, otherwise the bleeding gets very bad.

Initially, the vascuitis was on my lower legs only. By now, it is moving higher - by the end of the day there are broken blood vessels around my knees and higher.

I was on prednisone for a while - made no difference.

I have been taking plaquinil for over a year - it's not helping with the vasculitis.

I am 42, female, thin and active. I desperately need some advice. I've been wearing compression socks with boots to work - they help somewhat. Summer is almost here and I have no idea how I'm going to dress for work.... it need to figure this out before then.

Thanks so much!


Hi Andi I don’t have any advice I wanted to let you know I hear you and wish you healing <3

I have also developed vasculitis. I saw my doc on Thursday and she started me on Cell Cept. Another friend of mine takes Imuran for her vasculitis. It’s not something to ignore as it can lead to organ damage.

Good luck!

my first visible sign of SLE was vasculitis... I am very tanned (Spanish) and looked like I was bleeding everywhere... forearms., legs, trunk of body.... was the worst issue I have had... heavy prednisone helped and thankfully has never retruned.

hope this passes for you as well

Hi. I had vascilotus at the beginning. 25 years ago. Massive doses of prednisone and other iv steroids did it. Stay away from plaquinal. Bad for the eyes. I am blind in one because of it. I am on cellcept now. Things are good. Get a good oncologist / hematologist. I did. It saved my life. Steve. Praying for you.

I had two really bad boughts of Vasculitis this year landing me in the hospital and almost loosing my life due to kidney failure. Doctor told me I would not make it as my kidneys were shutting down. That night I prayed to God to take this from me and heal me. I mean, how do you tell your kids and your family you are going to die? I was so scared! I went into a coma for 24 hours after my prayer and when my husband was able to wake me up the doctors came in and my kidneys had reversed !!! They were and still are healed! Prayer really does work I am proof!

What my doctors were giving me while in the hospital was high dose steroids and Cytoxan chemo. I am no longer on chemo but took 6 months of it to calm down the Vasculitis. I am being slowly weaned off steroids. I’m on 12.5mg. now.

Please contact your doctor because this stuff is nothing to mess with. What you see on the outside is only a small representation of what’s going on inside. There can be some very urgent things going on with your organs. If you feel bad please just go in to doctor. If you get worse go to the ER. Oncologists and Rheumatologists treat Vasculitis. Be sure you find good ones with experience.

I pray you get some help. There are lots of meds to treat it before it gets out of control. Hugs-Tina

My family member with SLE takes Actemra, methotrexate, plaquenal, and another anti malarial. Prednisone and Cell Ceot did not work for her. She has been on monthly infusions if Actemra for 4 years. Best of luck to you . Will pray for you.

Vascuitis is usually treated with high doses of Prednisone & Cytoxan if it doesn't respond to steroids. If you don't get any help for your current Dr get a second opinion. It sounds like your Lupus is active & needs to be brought under control. Good Luck to you

I used to get terrible vasculitis. I was extremely underweight for many years and was in great shape so that had nothing to do with it. I strongly suggest you keep a journal ad to what makes it worse. For me even a one inch patch of sunburn would cause the hemorrhaging. Alcohol was anorher huge trigger. Red wine and spirits triggered almost instantaneous petichiae on my legs. Standing too long will do it as will sitting too long. Red meat also caused problems. The vasculitis moved from my lower legs up into my abdominal wall lining. It caused severe pain and I couldn’t move when it would act up. High dose steroids helped but cytoxan was what kicked it’s butt. I only have mild episodes now but I think it’s because I avoid all of my triggers and I’m in bed so much. My current rheumy won’t rx cytoxan so I’m on cellcept which I’m not tolerating at all well. I used to be self-conscious about my purple and red legs but now I just don’t care what people think. Definitely talk to your doc about it and try to see what triggers it for you. Gentle hugs

Hey there, I too have vasculitis. I was put on a heavy dose of prednisone and Imuran. It really helped a great deal. Maybe speak to your doctor about trying an alternative medication. I’m hoping you will find something that works for you.

i recently read about some new procedures about vasculitis as i myself also have had small issues with it. It was very easy way to deal with it, but i am not sure of procedure...lasar possibly.

I also go see dermatologist and do entire search on google plus some other decent search engines about it. You might also look in places like Mayo on their sites.

I tend to find new infor like this from Medscape which picks up articles i told them i am interested in and they send it weekly or as often as you like, to your email service. So you might try them as well.

I know when mine acts up i must do other things than take plaquenil. Plaquenil is like a general anti inflammatory (though it is not really) that works on slowly flares and other issues with basic SLE.

Good luck...I search all NIH, UCSF sites as well as mayo, stanford plus any other teaching hospitals that work a lot in this particular area.

I try to avoid heavy steroid use as side effects can kill you. I know, known people who died from them causing damage to their bodies. As long as other options out there...just do not pick what easiest for any doctor to know...

I am sorry to hear you have it so bad. I mainly get it on my feet but the doctor told me to wear tennis shoes all the time. I usually end up wearing jeans to cover my legs. My arms I just put on alot of sunblock. I was diagnosed with lupus 24 y=ars ago but since then I have had it affect so many parts of my body because of all diseases vasculitus being one of them. I also have interstitual lung disease and congestive heart failure. I have sjogrens, R/A, COPD! Fibromyalgia, raynauds, sleepwapnea, hypothyroidism, muscle atropy, osteoporosis,, chronic pain and of course fatigue. Ask your doctor what he suggests, hopefully he can help. Good luck.

I too have SLE with vasculitis . Everyday is different and unknown . Lucky my personality has adjusted to this mess my body is in. Just found out I have bad cataracts both eyes and I am seeing a surgeon. Heavy doses of prednisone since 2006 has really tore me up. I have raynards, hashimoto, SLE , interstitial cystitis , neuropathy , both CNS and small fiber. I also have insulin resistance, osteoporosis , Gastric parsis, osteoarthritis , and that is only a brief list. Benlysta not working, starting on Retuxian next month. New reheumatologist taking a fresh look as I can’t seem to put more than one or two good days together. On plaqunil, cell cept, 40 of prednisone daily…much more to that list! I seem to be slowly getting worse ! Try try try as I might !

Please get a second or third opinion, and if possible go to a Lupus research hospital, I think there's one in Atlanta.

I too had problems like yours. I can tell you from experience that too much prednisone is like a double edge sword. I was on various doses for over 15 years, and developed such bad osteoporosis that my bones would spontaneously break. Feet mostly, and also ankles. I would heal from one and then the other foot would break. In and out of casts so much, my leg muscles would atrophy. After my left foot had to have screws in it to hold it together, the surgeon told me I have to get off the prednisone totally. I was in a living hell, not being able to take 'any' meds for the Lupus. I developed eye problems from the Plaquenil, allergic to Methotrexate, Imuran, Enbrel, and a whole bunch of other meds. For years I was just in agony.

I just started on the Benlysta, as I mentioned a few weeks ago. For several months now, and I'm feeling somewhat better, but still have the severe fatigue. My pain level is down from a 7-8 to a 5-6, so I'm very happy about that.

I truly hope you can get help, and soon. My thoughts and prayers are with you.