Vasculitis?

Hey everyone,

I hope you all are doing well. Sorry I haven’t posted in a while. I’ve been in a major flare and just recently ended up in the hospital again. Anyway, I got nerve conduction studies done on Thursday and when I woke up on Friday morning I couldn’t feel my arm. I had no power in it. It was by far one of the scariest feelings I’ve ever felt. Since being here I’ve done and MRI of the brain and my brain lesions have not yet healed.So I was sent for a CT scan of my brain with contrast dye and they found abnormalities in my blood vessels. I saw my neurologist yesterday and he said they still don’t have anything concrete but he mentioned vasculities but he also mentioned trying to rule out MS. Does anyone have vasculities and what symptoms do you experience?

I’ve read up on it but it’s all a blur so I just wanted to know what your personal experiences are with it.

Thanks :slight_smile:

Hi :slight_smile: i just started getting the the ANCA blood test several weeks ago because of my constellation of symptoms with relapsingpolycondritus. . This test is for an antibodie found in most kinds of vasculits. . I was negative but will be tested ever few months. If you test positive there is a couple follow up blood tests to determine what kind of vasculits. There’s several ways to detect it including imaging but these blood tests and or a biopsy are the most certin way to tell exactly what’s going on. Hope you feel better soon :slight_smile:

Hello

About 3 years ago I woke up with right side weakness, slurred speech, balance problems. My son took me to the doctor and they sent me straight to the hospital. I was their for a week and it was determined vasculities from lupus . I did physical therapy, and speech therapy. I have not had any lasting effects. I do have a small spot on my brain that is checked once a year.

I hope they can help you and tell you something soon. Please keep us posted.

Thank you both :). Still in the hospital which is no fun. Especially when you have no answers. I’m hoping to get some and hopefully then I can go home too.

I had a very similar symptoms as you they thought that I had vasculitis but I also came back negative with blood tests. They also did testing for ms which was inconclusive. Therefore I really never got any really answer. I still have chronic lipus headache and terrible migraine

Sorry about spelling I just woke up :wink:

Thinking of you. Kaz x

I had Vasculitits in 2013 and was hospitalized for it too. I had swelling, weakness, numbness and a rash with little purplish spots on my legs. Not a lot of them though only about ten or so spots. I also had memory issues and problems with my kidneys. They gave me steroids and chemotherapy because it was so bad.

There are several types of Vasculitis and they are treatable. Unfortunately it’s just another thing Lupus can carry with it. At least they are figuring it out so you can get treatment.

There’s a couple of good support groups you should join. I learned more in there than anywhere else.

I pray you get well and discharged home soon!

I will write more later, but I have posted some thoughts on this on two other threads recently: How does Lupus affect your eyes and Central nervous system. I believe that this is the primary Lupus presentation in my wife with many secondary presentations. Best wishes.

Hi Birttany,

I have had Vasculitis for more than three years now. That was the first thing that they diagnosed which then traced back to Lupus. Apparently, the two go hand in hand most of the times.

I had a number of red spots on my lower legs and anywhere you usually get circulation problems. They did a biopsy on the spot and diagnosed it as Vasucilitis and that the red spots were actually my blood vessels bleeding inside. It usually manifests when am wearing tight clothes, exert pressure anywhere or have been on my feet all day long.

Medicines didnt really help me, but changing my lifestyle did.

Hope this helps! You are in my thoughts. Take care

Brittany,

This is exactly the topic that I have been reading about because I am convinced that this is the primary presentation of my wife's lupus. There are many, many secondary presentations. I had suggested educating yourself in an earlier post, and would like to share some of the key studies that I have recently read. Having these available and highlighted will enable you to ask better questions of your specialists. The third one is particularly good. Antiphospholipid Syndrome is something that you need to educate yourself on. To oversimplify, lupus vasculitis makes the antiphospholipid antibodies go into overdrive and as the come into contact with the walls of your blood vessels, they start to break them down on the cellular level, and this can cause clogs in the smaller vessels like those of you brain, pancrease, kidneys and skin. Several studies suggest prednisone dosages of 1-2 mg/kg of your body weight to get control of a flare. I have seen others that suggest even higher doses.

Vascular Manifestations of systemic lupus erythematosis: http://ang.sagepub.com/content/37/6/423.abstract

CNS Lupus: Neurologic and Psychiatric manifestations of Systemic Lupus Erythematosus: http://lupusinternational.com/About-Lupus-1-1/Central-Nervous-System-Lupus-Overview-/Central-Nervous-System-Lupus-CNS-.aspx

Vasculitis: http://lupusinternational.com/About-Lupus-1-1/Vasculitis.aspx

Recurrent stroke and multi-infarct dementia in systemic lupus erythematosus: association with antiphospholipid antibodies: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1002208/

It will become important for you to arrange for the possibility of Anosognosia, the inability to recognize one's own mental deficit that can come from damage on the frontotemporal region of the brain. I wish that I had better news, I can't help my wife anymore, and I believe that she does have Anosognosia. I also believe that this is a family disease, and your family needs to be educated. I did not understand enough soon enough, and now I have reason to believe that my children could be in harm's way as a result of her CNS and over 20 years of chronic steroid use, and I feel so powerless to help any of them.

I will keep you in my prayers.

Thank you so much. The doctors haven’t really been explaining anything to me about vasculitis. All they have been saying is that it can be dangerous. I will definitely read through these. One thing that I have learned over the course of fighting this disease is that I can’t always take the doctors word for it. I need to do my own research and educate myself.

I really appreciate you all taking the time to reply to my post. I will keep you all in my prayers. Take care.

Hi Brittany :)hope you're hanging in there. .being hospitalized sucks! Do you have APS? Just asking because of the last post. . I've been positive for antiphospholipid/ cardiolipin antibodies since and was a teenager, probably born with it but don't fit the criteria for the syndrome yet because i haven't had a DVT/PE yet but I've also not tried getting pregnant in 17 years so who knows if I could have had viable pregnancies over the last decade throughout symptoms i ignored lol. . because of my hematologic issues and my protine c deficiency anytime i have to go to the ER (really try never to go unless it's scary serious ) im almost always hospitalized because of my high risk of PE,DVT, stroke. . Im on 75 mg of plavix a day for my "sticky "blood and should be on kumadon for the protine c deficiency but unfortunately my hematologist said the risk outweighs the benefits because of my constant spontaneous labrual, tendons and tissues tears..basically I'll bleed out:/ just try to remember the drs need to think worse case scenario when it comes to serious illness that we have but also try not to worry you're self to deathi really hope everyone is being very nice to you and your resting comfortably :)

Hey Dawncelest :) I was never diagnosed with APS but then again to be quite honest I cannot remember if I was ever tested for it. I have done so many test in the year since being diagnosed that I find it quite hard to remember haha. I was discharged from the hospital (FINALLY). They ended up saying that I indeed have vasculitis. I was taking 150 mgs of Imuran but now they said that I need something stronger. So instead I started Cellcept and they put me on 80 mgs of Prednisone for a week, then I taper down to 70mgs for a week, and then I taper down to 60mgs and which I'll be on that dosage for a little bit. I absolutely HATE prednisone but I guess I do not have a choice. The other option my rheumy suggested was something called Cyclophosphamide but she said the biggest side effect could be infertility. Which of course scared me. I am only 23 and would like to have children in the future. So I instead opted for the Cellcept but she said if this new treatment doesn't work I'll have no choice but to go on the Cyclophosphamide. So crossing my fingers that it will indeed work.

I hope you're taking care of yourself.

Hugs,

Brittany.Xoxo

Glad you're out! Im on 1500mlg a day of cellcept and i did a 6 month round of cytoxin (Cyclophosphamide) at the highest dose last year. . They both really help with my intestinal lung disease and the "vasculits " like symptoms in my lungs and brain :) sounds like you're Dr's are being proactive in your treatment witch is great! Unfortunately when you have an aggressive disease presentation you gotta be even more aggressive with treatment:/ definitely talk to your specialist about you concerns of taking these meds but still having a family one day. It's important to still have hopes and goals for the future and babies are a great goal! Xo

Hi, I don’t have that , but my sister has it. Which her mother and granny both had it ( and are deceased ) , am not sure that is what caused their deaf , also I met a lady @my doctor office that had both. She said that she was born with it and the Lupus came when she was in her teens. At that time , she said that she was almost 56years old , of course that was at the early stage of my Lupus 4years ago. I havent seen her since that day. But life is so precious , so I don’t wonder anymore about my time span. Just live for the Now. Hope that you beat these health issues. …Beverly L.

I have vasculitis. I bleed easy and get huge bruises on my arms and legs when it acts up. I also get very itchy. They have to give me special meds for the itching. The bruising gets so bad that people think I’m being abused. I used to have teachers who would ask me if everything was okay at home. I hope you get feeling better soon.

Oh my I hope you’re all taking care of yourselves. This is definitely a new step for me but I’m taking it all in stride. Hopefully we all will get better and be able to live a “normal life.”

They think i have vasculitis i didnt get the test but taking magnesium helps and rest staying warm in the cold and keeping my limbs cool in the summer. God bless u i just pray that he heals u right now!

Thank you very much. I’ve been pretty ill since my release. I’m not sure if it’s the flare or the side effects of the new meds. Either way it sucks. I hope you’re taking care of yourself as well. Hugs,

Brittany



janelle said:
They think i have vasculitis i didnt get the test but taking magnesium helps and rest staying warm in the cold and keeping my limbs cool in the summer. God bless u i just pray that he heals u right now!