Vasculitis

Posted by gtalan @gtalan, Jun 19, 2017

14 years ago I had my first vasculitis scare, had a bad rash on both legs then large wounds on my left leg and small wounds on the right leg.
It took three months on strong meds to heal up and the vasculitis went into remission.
The first of 2017 it started again, 6 months and I still have a deep wound on my left leg (nothing but a small rash on the right leg) I been on strong meds and wound care, it’s getting better but very slow. I’ve been told it’s Livedoid Vasculopathy or Vasculitis. It’s very painful and very rare and I’m very tired of having it. A doctor told me this is about the only type of vasculitis that’s painful, 14 years ago the large wounds had no pain but this time it’s very painful.

Hello @gtalen – Welcome to Mayo Connect. You have come to the right place to get some answers. There is an active discussion on livedoid vasculopathy on Mayo Connect here – http://mayocl.in/2tFTMbL. Can you share the type of medication you are taking? You might want to post your question in the discussion in the above link.

You may also wish to view this discussion about, “Treatment options for Lividoid Vasculopathy (LV)” here: http://mayocl.in/2kZ4s0k and this Mayo Clinic patient story: http://mayocl.in/1l54vIS

John

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@johnbishop

Hello @gtalen – Welcome to Mayo Connect. You have come to the right place to get some answers. There is an active discussion on livedoid vasculopathy on Mayo Connect here – http://mayocl.in/2tFTMbL. Can you share the type of medication you are taking? You might want to post your question in the discussion in the above link.

You may also wish to view this discussion about, “Treatment options for Lividoid Vasculopathy (LV)” here: http://mayocl.in/2kZ4s0k and this Mayo Clinic patient story: http://mayocl.in/1l54vIS

John

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Thank you John, I’m taking prednisone and about 4 different antibiotics over time (not all at the same time).
I also have Fibromyalgia and yes the pain from both is a little too much at times of flare ups.

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Hola tengo 48 y el año pasado me diagnosticaron vasculitis cerebral. Pero tambien tengo HBP fibromialgia. Y estado Hipercoagulable. Es muy dificil para mi lidiar con tanto dolor.

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@shaydee

Hola tengo 48 y el año pasado me diagnosticaron vasculitis cerebral. Pero tambien tengo HBP fibromialgia. Y estado Hipercoagulable. Es muy dificil para mi lidiar con tanto dolor.

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¡Bienvenida a Connect @shaydee! Es muy difícil vivir con un diagnóstico de vasculitis cerebral y además HBP fibromialgia. La invitamos a compartir su experiencia en nuestro grupo de Mayo Clinic Connect en español. Esperamos que su comentario nos ayude para que otros miembros se animen a compartir su experiencia sobre esta enfermedad. Este es el enlace:
https://connect.mayoclinic.org/group/espanol/
Y también aquí le envío este enlace donde puede encontrar información sobre ensayos clínicos actuales relacionados con la vasculitis:
http://www.mayoclinic.org/es-es/diseases-conditions/vasculitis/care-at-mayo-clinic/clinical-trials/con-20026049
Nos gustaría saber un poco más sobre usted. ¿Podría compartir más detalles sobre lo que le han recomendado los doctores para ayudarle con su condición de salud?

Saludos, Gabriela.

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@shaydee

Hola tengo 48 y el año pasado me diagnosticaron vasculitis cerebral. Pero tambien tengo HBP fibromialgia. Y estado Hipercoagulable. Es muy dificil para mi lidiar con tanto dolor.

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Para mi es muy dificil pq tengo estado hipercoagulable. Y esto no me deja tomar cualquier meficamento. Ademas ya tuve un CVA y 5 DVT.

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@fitchick40

If I'm in the wrong group please direct me to the right group. Is Vasculitis an autoimmune disease? My RBC, WBC and Immature granules are too high. The ANA is negative. I get a rash on my left side under my spleen. It goes away on it's own but has come back several times. Before the negative ANA my doctor was convinced I had Vasculitis and wants a biopsy. I don't want to do one unless I really have this. Waiting to hear from doctor.

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Hi @fitchick40, There is another discussion with the same name in the Autoimmune group. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion to combine the two discussions.

> Groups > Autoimmune Diseases > Vasculitis
https://connect.mayoclinic.org/discussion/vasculitis/

There is also an active discussion on the ANA test results here that you may want to join and post your question.

> Groups > Autoimmune Diseases > What can cause ANA titre of 1:2560?
https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/

Have you had any other tests done to determine if you have vasculitis? Mayo Clinic has some information that may be helpful here:

Vasculitis – Diagnosis & Treatment: https://www.mayoclinic.org/diseases-conditions/vasculitis/diagnosis-treatment/drc-20363485

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If I'm in the wrong group please direct me to the right group. Is Vasculitis an autoimmune disease? My RBC, WBC and Immature granules are too high. The ANA is negative. I get a rash on my left side under my spleen. It goes away on it's own but has come back several times. Before the negative ANA my doctor was convinced I had Vasculitis and wants a biopsy. I don't want to do one unless I really have this. Waiting to hear from doctor.

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Hi @fitchick40 you may have noticed I moved your post to this existing discussion on Vasculitis as @johnbishop suggested so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

@fitchick40 is the rash your only symptom at this time or do you have others?

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