Allergies, Mast Cell Activation, and Sjogren's?

What happens when our immune system goes haywire?

Recently, I've met a few people with both an autoimmune diagnosis and mast cell activation syndrome, which appears (to my layman's understanding) to be an extreme allergic reaction to harmless substances in the environment.

I recalled that before I was diagnosed with Sjogren's, I was told that I had indoor and outdoor allergies and was allergic to almost everything from pollen to dust mites to cats and dogs. For years, I thought I had unusually strong allergic reactions to the environment because the extreme sinus pressure and fatigue I was experiencing didn't seem to correspond to the severity of other allergy sufferers' symptoms. I remember feeling so miserable—a feeling of dread overcoming me and feeling like I was going to die. I actually googled at one point whether it was possible to die from environmental allergies.

Is it allergies?

It's difficult to explain how debilitating these seemingly innocuous symptoms are. . . . They were robbing me of my social life, my hobbies, and, in some ways, my personality and identity.

In the past few years, my allergy symptoms have progressively gotten worse. Despite taking Claritin in the morning and Zyrtec in the evening, and using Flonase twice a day, my symptoms were severe and debilitating. The fatigue and brain fog were unbearable. Sometimes, I would literally stop mid-sentence, as the symptoms overcame me, and I would need to excuse myself from a meeting or conversation.

For me in particular, a strong autoimmune response was also often accompanied by a wave of lethargy and sleepiness. On some days, it became difficult to get out of bed. Other days, I would cancel plans in order to take long naps during the day. This was more and more reminding me of how I first felt with Sjogren's, 5 years before I received a diagnosis.

It's difficult to explain how debilitating these seemingly innocuous symptoms are. Doctors and specialists are often unsympathetic when there are no obvious signs of pain or bodily damage. But the fatigue and brain fog were overwhelming and were greatly interfering with my ability to function as a normal and relatively young person. They were robbing me of my social life, my hobbies, and, in some ways, my personality and identity. I felt like a shell of my former self, struggling every day simply to get through the basic tasks of living, with no room or energy to be myself.

What about mast cell activation syndrome?

I read about mast cell activation syndrome around that time and suspected it, because when the seasons changed and pollen started to descend, I would also experience episodes of what I can only describe as extreme allergy symptoms. My heart would race, my sinuses felt congested, eyes swollen, with swelling/tingling in my throat, and a feeling of dread would just overcome me. I would often lie wide awake at night, unable to sleep. These episodes of extreme symptoms would last a few days and then gradually improve (often with the help of prednisone).

The problem, however, is that when I did experience these extreme episodes, I could not get out of bed, let alone go to the doctor's. It's only when my symptoms have somewhat improved that I can relay my experience to my allergist. At one point, I did a tryptase and 24-hour histamine test, but my results were negative for both.

Back to the rheumatologist

I was convinced, nevertheless, that these symptoms were the result of my immune system going haywire. I consulted my rheumatologist and increased my intake of prednisone. Prednisone worked to a great extent for me. But, over time, its effectiveness declined, and I wasn't able to get relief from the brain fog unless I was on very high dosages of prednisone (around 60mg). Long-term use of prednisone also came with side effects and significant risks. I didn't want to continue down this path, but I also didn't want to lose my quality of life to this disease. It was the only thing that made me feel like myself again on some days.

My rheumatologist and I eventually experimented with a number of systemic immunosuppressants, hoping that they would curb my overactive immune responses. I've tried mycophenolic acid (Cellcept), azathioprine, and leflunomide. Unfortunately, none of these helped with my severe "allergic" responses to seasonal changes or debilitating fatigue. I scoured the internet for studies on Sjogren's and potential treatments for associated fatigue. But there is no approved medication to treat Sjogren's fatigue and a few studies on hydroxychloroquine (Plaquenil) and rituximab showed mixed results and no large-scale efficacy.

Could allergy shots offer me some hope?

I finally resorted to getting allergy shots, hoping that they would alleviate some of my symptoms. The process is not a simple one—it requires significant time commitment and dedication. The average treatment takes about 3 to 5 years, but there is some evidence that 70% of patients who undergo allergy shots experience some reduction in symptoms. I'm not sure how optimistic I was about the process, especially when an allergist told me he didn't really have an answer as to whether my autoimmune condition would interfere with the effectiveness of the treatment, although the practice has successfully treated patients with autoimmune diseases.

For the first 6 months, I had weekly allergy shots, slowly increasing the concentration of the allergen injected into my body until a maintenance dosage was reached. The idea was to slowly increase my body's exposure to the harmless allergens until the immune system becomes desensitized and no longer reacts to them. Interestingly, when I first started receiving allergy shots, one of my main side effects was fatigue—I would feel so exhausted after the shots that I would fall asleep on the couch at 5 p.m.

Once the maintenance dose is reached, it is advisable to continue to receive the shots every month for 3 to 5 years in order to ensure that the effects of the treatment are lasting. I am 4 years into allergy shots now. My skin prick test shows that I am no longer allergic to trees, grass, weeds, and other pollens as I used to be. But when the season changes, I still experience fairly significant symptoms. My seasonal allergies may have improved, but they are certainly not gone. I still believe that they are somehow triggering a strong immune response in my body that is causing my symptoms. The last few years have also been particularly bad for allergy sufferers as pollen counts in the city continue to rise.

I'm not sure how much allergy shots have worked for me. There may have been some improvements, but not enough for me to feel normal (whatever that means for me now). Sometimes, I think about quitting the shots, but I am so far along now that I might as well just finish the whole course of treatment. In the meantime, I continue to manage my severe reactions and fatigue with prednisone and low-dose naltrexone (more on that in another post).

I would love to hear about your experiences. Do you suffer from extreme "allergic" reactions along with your autoimmune condition? For years, I've felt like I was going crazy because how could my allergy symptoms be so crippling when others seemed to still be able to function? I've gone through various phases of doubting myself—wondering if I should just toughen up, how anyone can live with seasonal allergies, or if my body is just so "out of whack" that I am experiencing this unique set of symptoms. If you've had similar experiences, please share in the comments.