vasculitis

Hi. Im 42 years old. I just saw a hemotologist for the first time. My family doc is trying to find out whays wrong and thinks i have vasculitis. Ive been sick for a while. I have went to doc alot.. They were thinking i was a nut case (i think)... And now i am finding out that 3 docs think.i have vasculitis.. Im devastated. I have a small child with no father really. I have large red patches of blood looking material.on my legs. im weak. I also have beginnings of emphysema and have taken steroid shots for years.. The doc thinks the steroids have caused vasculitis. What should i do if my cure is my poison? - carla

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I suffer from rhuematoid arthritis, which is an autoimmune disease. It affects the lungs causing scaring in many but not all patients. My lungs are severely scared. It also can cause vasculitis, which is inflammation of the blood vessels. I have some minor skin lesions but my doc says not vasculitis. Since you have both vasculitis and lung involvement perhaps you have undiagnosed RA?

You may ask about seeing a rheumatologist. Do you get any joint stiffness in your wrists,fingers, or ankles in the morning when you wake up?

Blood tests for RA are, ANA, CRP or ESR, anti CCP and a couple other. There are many false negatives and false positives. Anti CCP is the best test.

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What should i do if my cure is my poison?
Hi Carla!
If you are interested to discuss about possible way out off this absurd situation you are welcome to contact me by e-mail.
Bodymind

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Hi Carla, I was diagnosed with vasculitis a few months ago. I had small red dots on my lower legs which became open ulcers. I have been on Dapsone 50 mg daily for 1 1/2 months and they are closed and healing. Mine did not involve any organs so I was very lucky. I wish you a speedy recovery.
Good Luck!
Janet

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I am glad your organs are good. My hematologist says i have it, my family doc says i dont. My hematologist said i got it from taking steroids to breathe.. I have just a little petechia on my arm. They have done no other tests on me. How do they find out if it has affected your organs? I would like to talk with u more about tjis. They dont want to give me any steroids so how do u think tgey will treat me? - carla

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Hi Everyone:

Since early May this year I have had some "spots" on my lower legs that have progressed to awful ulcers. They are like craters about the size of a nickel to a quarter. There's horrible pain and the dressings have to be changed at least every other day. Right now my legs are burning and stinging with stabbing pain here and there. Not a fun thing at all.

They first thought I had venous insufficiency and instructed me to wear compression socks. I did a few times but it made the pain so much worse I stopped. A venous doppler ultrasound showed nothing abnormal. I've just learned that with vasculitis, wearing compression socks causes purpura which is bleeding under the skin (I think that's right) and it shows up as a rash of raised bumps that get bigger and some form blisters but none of them formed ulcers.

Since it kept getting worse, they sent me to the dermatologist who said she thought it was vasculitis. They did a biopsy and vasculitis was confirmed. Two other tests were done: ANA and ANCA. The ANA result was normal. The ANCA result is not back yet. It may be too simple to say, but I understand that a normal ANCA indicates no organ involvement. Otherwise I think the kidney among other things is affected.

The cause of vasculitis is unknown. Sometimes it is related to a medicine taken for a long period of time. They had me stop my two cholesterol lowering drugs and ibuprofen for two weeks. I don't know what happens after that.

This week I finally had my appointment with the wound care department. They did some measurements of pulses and then the technician sat down and started to debride one of the many ulcers. The pain was through the roof. I had no warning about the procedure and I couldn't handle the pain so they stopped and just washed the rest of the spots. Another technician came in and dressed both of my lower legs. Now that's my job.

I will see the dermatologist next Friday when hopefully I will get the ANCA results and they have scheduled an appointment with a rheumatologist for September 10th. I'm going to ask about Dapsone for sure.

Thanks everyone. I'm not better but I do believe I know a little more. I hope you'll all come back with any news about your care or just how you're doing.

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Please be mindful that ANA and ANAC have many false negatives, the tests themselves, and the very up and down nature of most autoimmune diseases make that so. Having positive results does not mean you do not have a disease but that none can be detected at that time.

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Dear Dontbesilly,
I can totally identify with your pain and frustration. I actually went before grand rounds at the University of Miami Dermatology to ask their opinion. My first biopsy was inconclusive... after waiting two weeks to hear. Second one showed leukocytoclastic vasculitis, however, it seems it morphed into a vasculitis involving larger veins. Normally you do not develope open ulcers with small vein involvement.

In addition to the Dapsone, there is another drug - Rituximab - which has been used successfully in treating vasculitis. It supresses your immune system so I could not take it as I am on Immuran for the past two years which suppresses it as well.

They think mine was caused by taking Bactrim... apparently sulfer is a known culprit. I know I will never take it again.. just in case.

I also had a positive but atypical ANCA - not sure what this means. I am just very happy to be rid of the ulcers. Wishing all of you who are suffering a full recovery.
Hugs,
Janet

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Hello again:

Your answers raise questions! Robert, I think you are saying that just because I got a normal result for my ANA, I still could have some inflammatory process going on that is just not visible to the lab test chemicals at the moment.

Janet, I think in saying that small vessels usually don't result in ulcers I should consider large vessel involvement. Are these large vessels all veins or all arteries? Did you do dressing changes for your ulcers? If yes, how often? And what did you use as an antibiotic ointment. Did a rheumatologist prescribe the Dapsone? What is your diagnosis now? And, not to be grim, how do you know that there aren't internal processess going on right now?

Carla, do you know why you saw a hematologist rather than a dermatologist for example. I don't know that one is right and the other wrong. I'm just curious. How did you treat the spots on your legs?

Thanks.

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I am not an expert - just repeating what my doctor said about small vessels not causing ulcers. I changed my bandages daily - first washed area with soap and water, applied an anit-bacterial ointment - Mupirocin, and covered with gauze. They did not improve until I was on the Dapsone for a week. I was treated by a dermatologist who perscribed the Dapsone. My diagnosis is Vasculitis - not sure what kind it morphed into. I was told there was no organ involvement since my kidneys and lungs are OK.

Good luck to you!

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Dontbesilly,

That's exactly what I am saying. I a, proof and I have seen many others and my octors agree with that a positive test is not conclusive. You will need to monitor and continue to test periodically to be sure there is no autoimmune. Also, inquire about family history of autoimmune, arthritis, lupus, ms, scleroderma, ITP, fibromyalgia, pain and of course vasculitis. On the Dapsone, your dermatologist can script it for you. I saw someone post on Rituximab, they were looking at that or me, it's a mono-clonal antibody biological used for cancer treatment, RA off label, to suppress immune system. Sounds to me that if your vasculitis is large vien, arteriolar, that it could adversely affect internal organs and will require treatment from inside as opposed to opicals. Methotrexate is one that is less severe than others mentioned here by me or others, and has had good success on a number of these problems. It also is a first line treatment for some autoimmune diseases just in case you have one lurking in the background.

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. . . like psoriasis or Parkinson's, both of which I have!

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Hello:

Yesterday I got a temporary diagnosis of Leukocytoclastic Vasculitis which briefly is small vessel vasculitis. I haven't done any reading about it yet but that's what the doctor said. I then asked if we were no longer worried about it being systemic and the doctor said that we are worried about that but that we'll take first things first. Right now the plan is to keep doing the daily dressing changes and continue not taking the two meds I take for cholesterol as well as ibuprofen since in the last two weeks the lesions or ulcers I have on my legs have improved and no new ones have appeared. I go back in a month. My cardiologist has to decide about the cholesterol meds and I got home too late yesterday to talk to anyone in his office.

I just needed to tell you all this to see if you have any comments about this plan, considering you all are ahead of me in this process. Thanks for reading this.

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