Mirta talks about her Panarteritis Nodosa

What is your name? Where do you live?

I would like to use my pseudonym „Mirta“, Ilive in Northern Germany.

When were you diagnosed with vasculitis? Do you have a specifically classificied form of vasculitis (such as Wegener's Granulomatosis)?

I was diagnosed with Panarteritis Nodosa in June 2011.

What symptoms did you have prior to your diagnosis?

It started with a rash in the face including skalp and ears which tingled and burnt. I had red painful eyes. In just a few days the rash spread all over my body, I had problems swallowing. My family doctor took a blood sample and prescribed prednisolone-pills and -cream. Some days later I suffered from severe joint-pain and muscle-aches, I was hardly able to sit down. I felt fatigued. My family-doctor called me to tell me that my blood showed strong signs of inflammation, I should make another appointment. When I told him that my throat was extremely swollen I was sent to the ER. In the meantime I had developed a fever as well, so that I was immediately hospitalized.

Describe some of your experiences with the medical staff that has to deal with such a rare illness. What are the challenges and obstacles in getting information and the right treatment for a disease like vasculitis?

The clinic based their diagnosis on my family-illnesses (my father and my son both suffer from Lupus) and all the symptoms I suffered from ( rash in my face which looked like a butterfly). Three days later I was referred to the clinic of Kiel's university, since doctors suspected Lupus Erythematodes and admitted that they were not specialised in treating this illness. I am still very thankfull for that. I stayed for four more weeks in the clinic in Kiel (which is specialised in treating vasulitis) until I got the final diagnosis. I suffered from high temperatures close to 40oC/ 104oF for two weeks. I was treated with cortisone, the dose varied between 500mg and 75 mg. A skin biopsy brought the final diagnosis of Panarteritis Nodosa. In the weeks prior to the finaly diagnosis the doctors always explained what kind of tests they would be doing, what kind of illness they suspected (Lupus, Panarteritis Nodosa, Still's Syndrome) and what I was supposed to do in each case. The biggest problem where the high amounts of C-reactive protein in my blood. In the first days the doctors were unable to lower the amount and afterwards it would decrease only very slowly. Everytime I received a high dosis of cortisone I felt like a newborn, since my terrible joint-pains were gone.

As soon as the dosis was lowered the pains started again. I guess I was really lucky that due to a history of autoimmune-diseases in my family the doctors were able to start looking into the right direction and thus giving me the correct diagnosis so quickly.

What have been good and positive experiences with the medical staff?

As mentioned above the doctors informed me about every step they were going to take, they explained which test would be done and why (although I was just an ordinary patient without a private insurance). They told me what they suspected (Lupus, Panarteritis Nodosa, Still's Syndrome) and told me what I should expect for each illness, what the medication would be like.

The professor visited me quite often before going on duty (still in his private outfit) and asked how I was. The doctors really cared and never gave me the impression that I was just pretending.

Compared to so many other patients' stories my story must sound like I have been bought by the clinics. That is not the case. I am quite aware just how lucky I have been, and in the meantime I am positive that there is a guarding angel watching over me.

How did you cope with the news that you had such a rare disorder? What was the initial reaction on the part of family and friends?

While in the clinic I have never been told how serious and how rare my illness is. The real shock came when I was dismissed after four weeks and I went to my rheumatologist (who is my family doctor at the same time) to get an attestation that I was unable to work. I was told that I should talk to my employee, because it was likely that I would have to stay away from work for six months. I felt like fainting!

When I told my doctor that I suspected my fatigue and dizziness were due to my being in bed for so long and that after three weeks I should be my old self again, she said: "I think you are not yet aware of how seriously ill you are!"

After a week I bought the book "Vaskulitis" by Reinhold-Keller/Gross to educate myself on the illness. I am usually a person with a positive outlook on life, my motto is "Everything will be fine". Admittedly it sometimes takes me a day or two to come to terms with bad diagnoses like "completely inacceptable innerocular pressure, reduced field of vision, extremely high bloodpressure", and there are days when I am not well at all. For the last five months I have been suffering from severe pains, for example. I try to tell myself that the pains won't go away if I feel sorry for myself. I am a bit unnerved from the fact that I still have to take painkillers. My rheumatologist (I feel really well looked after by her, because she knows a lot about my illness) keeps telling me "you still haven't realized how severe your illness is, you need patience".

My husband, my son and my family are always there for me They care a lot and it is usually me who has to calm down them and not vice versa. My mother tells me over and over again: "I admire your kind of humor with which you accept so many things!"

What are some of the medications that you have taken or are currently taking? Describe side effects to these drugs and how you handled them.

Prednisolone daily dosis 10 mg
Azathioprine daily dosis 150 mg
Quensyl daily dosis 400 mg
Losartan daily dosis 100 mg
Amplodipine daily dosis 10 mg
Dekristol (Colecalciferol) weekly dosis 20.000 I.E.
Pantoprazole daily dosis 80 mg
Lyrica daily dosis 75 mg
Metamizole daily dosis 1000-1500 mg
(„My father says I don't need ordinary food anymore)

Sideeffects I suffer from include: elevated innerocular pressure (out of the acceptable range), reduced field of vision, extremely high blood pressure despite the medication I take, chronic gastritis, frequent bowel inflammation, shortness of breath and high blood pressure at the slightest strain (like going up 10 steps of a stair), strong weight-gain (14 kgs in 12 months) .

How much has your normal life and routine been affected by vasculitis? What have been the positive and negative effects of your illness on your family?

My main problem right now is that I am not able to tolerate any kind of stress, be it physical or mental. I have breathing difficulties as soon as I do things like cycling, walking quickly, being on a crosstrainer for only 5 minutes, my bloodpressure jumps up to over 190 despite my medication. The same goes for an hour of working at my desk. This results in strong headaches which will stay for the rest of the day unless treated with painkillers, sometimes even then they stay.I used to love sports like squash, zumba, aerobics and dancing but can't do any of it anymore. I would faint after five minutes. I like to go for a walk and I try to do some training with small dumbbells or with a light physiotape. I try to go swimming sometimes, but there are times when even that is hardly possible.

How do you keep on fighting when things get to the worst point?

I haven't been well these past few days. I have been suffering from severe headaches for the past five months and for the last two weeks from additional pains in my arms and legs. I take pain-killers and sleep a lot. In between I try to go for a walk. When going to bed at night I keep telling myself that tommorrow things will improve. That doesn't always happen, but sometimes. As mentioned before, I take a lot of strength from my positive outlook on life.

How important is having a support group in your recovery? In what ways has the Internet been a part of your understanding the disease?

I have been looking for a support-group for some time now. It is not easy, many of the support-groups mentioned in the vasculitis-book are either too far away or they simply don't exist any longer. By doing research I found this website and after hesitating for some time I registered with the forum. I am a bit reluctant to use the internet, this is the first forum I have registered with.

I am looking for a support-group hoping to see how others cope with applying for disability etc. From my point of view this website as well as others are helpful in educating the patients regarding vasculitis.


This page was created on "Girls & Boys Day 2012" by Bjarne Wiedenmann (12)