Angelika's Vasculitis-Story

My name is Angelika, I am 49 years old and I live near Hamburg.

Before being diagnosed with vasculitis I suffered from Pemphigus vulgaris (PV= a very rare autoimmune conditin of the skin) for 8 years which has been treated with Cellcept and Prednisolone.

My vasculitis-story:

My symptoms started in May. I got red petechia on my thighs, later on my joints started to hurt. In the night the petechia covered all of my body and every movement was painful. My family-doctor visited me and prescribed 100 mg Prednisolone. I was to come for a blood-test the next morning. After a very short time all of the pains were gone. They continued to stay away for 24 hours. After that the pains came back, now even my muscles hurt. Somehow I managed to get through the night, in the morning I called my doctor.

She told me that the blood-test had come back inconclusive. She recommended I go to the universitiy-clinic, where they knew me due to my PV, so maybe they would be able to help me quickly. Thankfully my brother drove me there.

On my way my pains grew less (I had taken 100 mg Prednisolone) but I got some really big hematomes (6x6 cm) Auf der Fahrt ließen die Schmerzen nach (ich hatte noch einmal 100 mg Prednisolon genommen), es bildeten sich aber richtig große schmerzhafte Hämatome (ca. 6 x 6 cm).

The doctor who is treating my Pemphigus decided I would be an inpatient.

I stayed for nine days, had several blood-tests, a biopsy and I met several specialists. After a week the diadnosis was Leukocytoklastic Vasculitis

The doctors suspected an infection with streptococcus and the taking of Aspirin.

I didn't have to take any additionals medication since cortisone is the only treatment, maybe additionally Cellcept, but that I am taking anyway. The sideeffects of Cellcept are coughing at night, a strong desire to vomit and some other things. By taking other medications I can handle them quite well.

When I received the diagnosis leukocytoclastic vasculitis I was not deeply shocked (although I didn't have any informatin on the illness), because I had decided that no illness should ever get me down again.

My husband and my family (mother and brother) have been wonderful in their reaction, they give me the support I need. Others do not cope as well with my illness, it is not visible to them. People who do understand me are dealing with a chronicle illness in one way or the other. I did have to learn who my true friends are, though.

Dealing with doctors and other medical staff has been a positive experience, I fully trust my family-doctor and my dermatologist. I did have some negative experiences with some specialists as well.

The vasculitis has not really changed my life. I had learnt before how to live with an autoimmune disorder. Since I am taking cortisone I don't have any symptoms.

Unfortunately I don't have as much information on LcV as I would like to have. Does every relapse follow the same pattern as the one before? Is there anything I am supposed to avoid? I was told I should not take any Aspirin anymore. I do know quite a lot on PV but even that I have had to look up on the internet. PV and LcV are both rare diseases, hardly any doctor knows how to treat them. Thankfully my doctors are very keen on taking in any information that I bring them.

Support-groups are very important to me, it helps me a great deal to know that I am not the only one having this kind of problems. In the first years of my illness I was unable to get support from support-groups, though.

All in all I can say that I am well, especially after having read other patients' stories. In my case both illnesses were diagnosed quickly and I was treated correctly.