I get this question a lot. And I wish I could answer it. Even though I was given a formal diagnosis of minocycline induced ANCA vasculitis, I was cautioned that no one felt 100% about this outcome, due to the inconclusive results from my lung biopsy.
Ummm, but what is minocycline induced ANCA vasculitis? The antibiotic (minocycline) I was taking for my acne triggered vasculitis, which is inflammation of blood vessels. The ANCA means it’s autoimmune, so my body is mistakenly attacking the blood vessels, causing damage. And for my case, the damage started in my lungs. Because vasculitis is systemic, we are always on the watch for signs and symptoms that it is spreading. Such as the nose bleads and high creatinine levels, indicating issues with my kidneys. These are both areas with high density of small blood vessels, making them likely next spots to see vasculitis. But the nose bleeds are pretty much non-existent now, and the preliminary kidney biopsy results don’t show signs of vasculitis. So what gives?
Another possibility previously mentioned, is cryptogenic organizing pneumonia. This is where your body thinks you have pneumonia, so it starts fighting off the pneumonia. But because you really don’t have it, your body damages good cells. The treatment for this disease is also steroids (very convenient for me), but typically it does not need the second round of immunosuppressants. Even though about 50% of patients will see reoccurrences again, steroids would just be taken again. I will admit, the explanation of “your body thinking you have pneumonia but you don’t”, came from doctors I saw in the hospital. I have not been able to find any similar description during my online research.
So because of these other possible signs that the disease is spreading (nose bleeds and kidneys), my rheumatologist wants me to start taking Imuran, which is an immunosuppressant. Even though Imuran is considered one of the less intense drug choices, it still has significant side effects and I would need to commit to taking the drug for 3 to 4 years. This is the time frame that clinical studies have shown is needed for the drug to take full effect. And then when I would be off the drug, there is no guarantee that I am cured. Relapse is still a possibility.
Up until this point, I have avoided seeking a second opinion, for a number of reasons: I really like all my specialists and don’t question their medical advice; I accept that medicine is not an exact science and there will be unknowns; I have been content with the treatment and progress I have made to date; and I don’t feel as though I am not getting the medical aid I need.
But now that I am second-guessing the decision to start the Imuran, I am seeking a second opinion. A friend from many moons ago through theatre, shared with me her personal connection to vasculitis and passed along the name of a specialist in Vancouver. I am so grateful that she did. I have contacted him, and he has agreed to look at my lung biopsy. However he explained to me that he is a pathologist and cannot comment on treatment going forward, so instead passed along the name of a Mayo Clinic doctor in Minnesota. Now I need to get to my doctor’s office to begin the paperwork of getting these two doctors my medical files for their review. And then we will go from there… (I think this will relieve some concern my friends were feeling for me too.)
I still don’t know how I feel about all of this. But I do feel a bit rushed and under pressure, as the Imuran is waiting for me to take it. And there is only a small window to begin it, in correlation with tapering the prednisone.
As for my arm, the infection is almost all gone. I finished the two weeks of antibiotics and I am still supposed to use the topical ointment. I have been given approval to finish the tattoo, but not for another month to let the skin heal more. Another thing I will need to decide how to proceed with.