It's just Lupus

My life with Lupus has been plagued with terms like, "it's just Lupus." In many cases, the problem was just Lupus or a result of having Lupus. However, it is frustrating when a new issue is labeled as a Lupus flare when it may be the start of a more serious problem .

"It's just Lupus," was said many times during the last hospital stay and over the past year with some ongoing issues. Sepsis was the cause of the hospital stay and Lupus joined the party making it worse and may have been a component of why Sepsis was able to infiltrate my body but it most certainly was not, "just Lupus."

The actual cause of the Sepsis is undecided at this time but looking back over the past year, we may have some clues. For instance, I developed heart palpitations (for lack of a better description) and a cough after a trip to Texas last spring. The palpitations would start then my body would cough, as if it was trying to correct itself. Two cardiologists (heart doctor) and a summer of cardiac testing left me with more questions than answers Although, the first carfiologist stated the issues were "probably just Lupus."

The truth is that Lupus weakens the immune system making a person susceptable to contracting an illness or disease and Lupus mimics other diseases. In fact, Lupine (Lupus) comes from the Latin word for wolf. The wolf, like Lupus disguises itself as something else in order to do harm. So, it is understandable why conclusions are often, "it's just Lupus" but, what if it is not?

Testing over the past year also showed latent TB and lung nodules which led me to a pulmonologist (lung doctor). At first, the pulmonologist insisted the cause was asthma and allergies so he preerscribed multiple types of inhalers and ordered allergy testing. Surprisingly, I only have a slight allergy to dust. The inhalers did nothing to stop the cough nor the heart palpitations but it did give me a terrible bout of mouth and throat thrush. Eventually, the pulmonologist came to the conclusion that the issues were, "just Lupus." Side note: recent tests were positive for latent TB again which also requires further testing.

Currently, there are a few lung nodules in the left lung which are stable and have been there for years (largest now 7cm). My recent hospital stay left a small pericardial effusion (fluid around the heart) and right cystic bronchiectasis so we shall see what the pulmonologist has to say during my next visit in two weeks.

Prednisone was the only thing that helped the cough and palpitation. I have been on Prednisone for almost the whole year since Lupus has been active. One problem with Prednisone is that it too can weaken the immune system though I usually feel great when taking it. The second problem is that prednisone may have been masking (suppressing) these symptoms temporarily over this past year. The symptoms will most likely return when I am no longer taking Prednisone. The plan was to stop taking Prednisone, Imuran, and Plaquenil in May but I was hospitalized so the switch to a new medication has been postponed until October.

Since the summer of tests were inconclusive, sinus drainage was the next possible cause of the cough and palpitations. An ENT (ear, nose, throat doctor) orderd a CT scan in early March which showed sphenoid sinus issues though I was unaware of the results until after the second CT was performed during this past hospital stay. The results of the new CT showed the infection was much worse than the prior results. Therefore, the ENT scheduled surgery for July 3rd to open up and clean out those sinuses.

Interestingly, the ENT suggested the infection may have been caused by a type of fungi called Aspergillus (most likely from mold). While it is not common in humans, people with weakened immune systems are extremely vulnerable. Symptoms of Aspergillus include cough and shortness of breath. Could this have been the cause of the cough (palpitations) and infection that led to sepsis? Pathology results of the sinus contents will tell the tale but one thing is for sure, it will not be "just Lupus."

Wednesday, June 19th will be a visit with the rheumatologist who is the doctor that oversees my Lupus. Stay tuned, my friends.