Sjogren’s Syndrome Update

Yesterday was my first in-person appointment with a rheumatologist in a year and a half. This was one year over what is recommended for a Sjogren’s Syndrome blood work panel. Those of us with auto-immune diseases are supposed to have blood work done every six months to check for disease activity increases. It’s important to know if our organs are being damaged.

My doctor is an hour away from my home so hubby drove me to the appointment. There was a very strict covid protocol in place and that made me feel better about venturing out in public. No patient was allowed to have a family member with them, which helped to keep extra people from crowding the waiting rooms.

SJogren's Syndrome Update

When entering the building, I encountered an automatic temperature reader. I was to put my wrist close to the machine and it read my temperature. I was allowed to pass this checkpoint because I didn’t have a fever. Then, there were large circles stuck to the floor. We were to stand on these circles to prevent people from getting closer than six feet.

When I saw the doctor, it was a very rushed appointment. The doctor was masked and shielded. The conversation was thorough and she explained everything about the upcoming tests. After looking at my rashes, she told me that she wanted them biopsied by the dermatologist that she worked with. She thought it looked like a Lupus rash.

She also wanted me referred to a pain doctor who specialized with fibromyalgia. She said that I was on enough medicine that can treat pain: Cymbalta, Gabapentin, and Low Dose Naltrexone. She told me that this pain doctor would have other drugs at her disposal (some experimental) that she didn’t have. I’m not sure what will be offered, but I am eager to meet her.

So, now I have two new upcoming appointments which are an hour away from home. I don’t mind this, but I hope that there is something good that will come out of all of this. Most of the time, nothing new is gained from doctor’s appointments. I look forward to getting my blood work results soon. Hopefully, nothing bad will be found. She’s checking my kidneys, ANA, and even signs that I might develop Lymphoma.

Doctor

Lymphoma is a cancer that can be found more often with those who have Sjogren’s Syndrome. So, every time I have had any symptoms that could point to that I get very nervous. Now, I just wait to hear what the tests show. It’s just another worry that I live with. Having multiple chronic illnesses keeps other dangers in the back of my mind.

Co-morbidities also occur with certain diseases and disorders. Because I have Ehlers Danlos Syndrome, I am more prone to have certain other diseases/disorders. That’s what co-morbidities are. Sjogren’s Co-morbidities included neuropathy, cardiovascular problems, cerebrovascular, and  thromboembolic morbidities. Other comorbidities include: osteoporosis, autoimmune thyroiditis, and diabetes.

It’s very important for those of us with Sjogren’s to have regular physical exams and bloodwork to stay as healthy as possible. I hope to keep up with regular testing now, even though there is a greater risk of covid by going to appointments. Thankfully, the clinics I go to have the best safety features possible to help us to stay safe.

@2020, copyright Lisa Ehrman

Disclaimer: I’m not a medical expert. This post contains my opinions only, and is not meant to be taken as medical advice. If you have a medical concern, please consult with your personal physician.

2 thoughts on “Sjogren’s Syndrome Update”

  1. I have RA and get blood work done every 3 months. Just had it last week. For me they’re checking my liver because of the drugs I take.

    1. Every 3 months is very often. I know that’s not fun. At least they’re trying to be careful with your organs. These drugs are very strong!

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