I just had my immunologist appointment, via phone because I’m immunocompromised and I usually see him at the public hospital clinic, which is a high risk location for COVID-19. I really appreciate that he is offering phone consults, as I was quite anxious about attending the hospital, but the appointment was essential.
He is the Boy-Wonder immunologist who is trying to diagnose the underlying condition that is the root cause of my inflammatory arthritis, allergies, angioedema, hives, extremely high bone density, hearing loss, vision loss, and various ‘slightly off’ blood counts.
I told him about my recent history with allergic responses…angioedema that comes and stays for a few weeks, then disappears again. Constant, tiny hives that you can barely see, just under my skin. I can feel them, they itch and the skin is dry and sore in places. But they are an annoyance more than anything. Still, I’d prefer they weren’t there.
My eosinophilic esophagitis is stable. I always have trouble swallowing, but impactions are rare. Mostly because I rarely eat the foods that get impacted the most. Some days its difficult to swallow. But some days its almost impossible. I can’t even swallow water without pain. Some days its near impossible to get my meds down.
I also told him about my spinal fusion, and that my neurosurgeon was afraid he would break his instruments, my bones were that hard. I took that to mean my bone is healthy, despite being extremely dense. There has always been the question whether my bones are ultra dense and extremely hard, or ultra dense and extremely brittle, as is the case with ostepetrosis. I figured that my bones being extremely hard is a great thing. I am not then at risk of fractures. I said that to my immunologist, to which he responded “we don’t know yet if your bones are healthy”.
Which was a bit of a bummer, I’ve been very happy about the hardness of my bone. I honestly thought it means my bones are fine. Nothing to worry about. I have to remember that my bone density is an extremely rare anomaly and a definite sign of a disease process. We just don’t know what it means yet. But of course I want to believe my bones are healthy!
I told him I’ve been off my meds for around five weeks now. I admitted that I haven’t restarted my medications because I’m anxious about COVID-19. I followed quickly with an admission that I know I am over reacting and I should start my meds. But I don’t feel comfortable restarting them yet.
I expected him to reassure me that its safe to re-start my meds. He didn’t. He said we have been unable to run diagnostic tests because I have been on heavy duty medications that interfere with the test results. He said we now have an excellent opportunity for me to stay off meds, which makes sense in the current climate anyway, and run more tests.
He checked my blood work and found that my inflammatory markers (ESR and CRP) are “significantly elevated”.
Holy shit! I wanted to say “Oh yay!” because my bloodwork is ALWAYS normal, and over the years so many doctors have used that fact to either imply or outright say to me that I am fine, and I’m imagining my arthritis.
Instead I said a very restrained “Oh that’s interesting, they are usually so normal”.
He said it was very interesting and my white counts were off as well, and there were a few other things that caught his attention. I almost started to worry. I wish I had a copy of those tests!
But the main thing is it has his attention. He is intrigued.
My eosinophil count is normal, but we have discussed that eosinophils are very sensitive to corticosteroids. Therefore, I could well have an eosinophilic disorder, but the blood work won’t show it. I know his biggest fear is an eosinophilic cancer, or a kind of lymphoma. I don’t dwell on that, because if I think about it too long, I get scared.
I don’t worry about things that haven’t happened yet.
The problem is always the corticosteroids messing with the blood work. Suppressing inflammation. Masking the real problems. He again asked me to decrease my hydrocortisone.
I told him I am as low as I can go. 32mg daily. The equivalent of 8mg of prednisone. 4mg more than my endocrinologist would like, but still very close to the physiological replacement dose. My body needs that much corticosteroid to function. I will have to take it every day for the rest of my life. Without it, I will die.
Adrenal insufficiency is an extremely underrated disease. It’s an extremely dangerous disease. More so than RA, it makes me high risk for COVID-19. A normal body, when infected by a virus, will make lots of extra corticosteroids to fight the virus off. My body can’t do that.
For me, social isolation is critical. I cannot afford to catch this thing. I always carry a card from my endocrinologist which identifies me as having adrenal insufficiency. I have a letter that I always carry to present to the ER staff if ever I need to go. And I have an emergency hydrocortisone kit so that I, or someone close to me, can inject me with hydrocortisone if I have an adrenal crisis. That’s what I can do to protect myself, but I am high risk.
I told him I don’t think I can reduce my steroids any further, but I would see what my endocrinologist had to say, in a few weeks. He agreed that I may not be able to reduce further, and it was hard to say what it would really mean in terms of diagnosing a systemic eosinophilic disease. Complicated.
He said he has a few tests that he would like to run. That being off my biologic and methotrexate is hopefully enough to get some proper results. That seeing my inflammatory markers have risen is an encouraging sign that he will be able to get to the bottom of things.
What a thought. Its only been fifteen years of ever-increasing symptoms that don’t fit the ‘typical’ picture for inflammatory arthritis. And so I add more and more diagnoses, that don’t make sense or fit together. Inflammatory arthritis, allergic symptoms, eosinophilic esophagitis and gastritis, some form of inflammatory bowel disease, incredibly dense bones and some mild bone marrow abnormalities, hearing loss, vision loss, pituitary tumour, skin cancer…it’s a lot. And much as I tell myself all these things are just normal for me, my immunologist is starting to get interested and a little excited about my case now. It’s good that he’s interested, but to be honest I desperately want all of his tests to come back normal. I’m tired and I’ve been through so much in the last few years. I’m a little afraid of a diagnosis that unites all my disparate symptoms, the worst cases he’s looking for aren’t anything good. So I keep reminding myself that its unlikely to be the worst case, and that a new diagnosis means a new treatment, and that could mean a much better quality of life.
Much easier during the day than it is at 4:30am. I started this post this morning and stuff happened, as stuff always does. Now its 4:30am and the pain in my spine has woken me, so I may as well blog. My recovery from my three level lumbar fusing is going well, but the pain is a huge 300 pound gorilla tonight, and I am so tired…but I can’t sleep. Pain won’t let me.
One upside of all of this is I am now off my immunosuppressant medication on doctors orders. My immunologist wants me to stay off of methotrexate and baricitinib for a few months (I’m still on plaquenil). That’s an upside in terms of lowering my risk for COVID-19. It’s a downside in that my rheumatoid arthritis is making its presence felt. Some days I have pain in my hands, feet, hips, knees, shoulders…most everywhere. I had honestly forgotten how painful RA can be. Other days its fine. But the painful days are becoming the majority, five out of seven.
And I have terrible fatigue. I need more sleep. I need naps in the afternoon. I’m not keeping up with the basic day to day life things and struggling to keep up with my businesses. I wish I could just take a week off to do nothing but rest. I may have to shut my business down for a while. Sales are slowing significantly anyway. But that puts me under some pretty severe financial pressure.
Most of this is outside of my control, however. The virus spreading across the world is changing everyone’s lives, this is new ground and we’re living through a historical event. All we can do is take it day by day and do our best to stay healthy.