I like to document my autoimmune journey, mainly for myself, but also because my posts could show up in search results for those seeking information. Also and perhaps most importantly, we need to educate more people about autoimmune disease so that sufferers aren't gaslighted about their symptoms.
This is from my November 17 post:
My struggle with dryness continues. In my post from August 25, I wrote in regard to my summer autoimmune flare:
I feared that I had Sjögren's syndrome, which causes excessive dryness. I have suspected Sjögren's syndrome for years, but I tested negative in the past. Most people with Sjögren's syndrome do test negative, so that doesn't rule it out. I plan to be tested again later this year, just in case the test shows something.
I was tested two weeks ago. I tested positive for Anti-SSA/Ro antibodies, which are autoantibodies present in around eight different autoimmune diseases, most notably including Sjögren's syndrome. I am being referred to rheumatology, but I know it is Sjögren's syndrome. I have the hallmark symptoms.
My new patient appointment with the rheumatologist was on January 6. I was very nervous about this appointment, for three reasons.
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First, I didn't know the doctor, and I had no way of knowing whether my experience would be good or bad. People who have autoimmune diseases quite frequently are gaslighted by their doctors and told to see a psychiatrist. I'm not kidding. I have read so many horror stories about treatment for both Hashimoto's (thyroid) and Sjögren's.
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Second, I did not want a lip biopsy done. Many rheumatologists believe that having a positive blood marker just isn't enough to know if someone has Sjögren's. This makes no sense, but it's tied to sexism (80% of sufferers are female) and lack of research into autoimmunity (also tied to sexism). Furthermore, many doctors see complaints of dryness as being unimportant and easily solved by over-the-counter ointments and lotions. They'd feel differently if they had horrific dryness everywhere inside and outside their body and while being allergic to most all of those products!
So, I had way of knowing if I'd be forced into a lip biopsy. No way would I ever want one. It involves cutting into the back of the lower lip and extracting a salivary gland for testing. I have mouth sensitivity that flares terribly with any sort of mouth trauma. I had a terrible time after my double-tooth extraction in 2021, and I hate to think about what a lip biopsy would do to me. Indeed, here are some comments I pulled out of some discussion threads about lip biopsies. Each paragraph is from a different person.
My lip has been numb, etc for almost a year. Lately it feels a bit better but will never be normal.
It took mine over two months to get feeling again. I still have some numbness.
Mine is still a little numb nearly 14 years later. Sorry.
Over a year. Sensitive to hot and cold. It's like it never healed. Doc says it takes time. Would have never had it if I had known …
My doc won't even do the lip biopsy because they can easily get the wrong spot with a false negative.
Took a good amount of time, was painful, and left my lower lip permanently damaged with numbness.
I had a lip biopsy done 2 1/2 years ago and I have nerve damage. My lip is numb a lot which can make it hard to pronounce words sometimes and I’m always spilling drinks down the front of my shirt. Lately it’s been numb constantly and it’s driving me crazy.
My Dr specifically doesn't order that test because of problems healing and permanent numbing that can happen.
Took a good amount of time, was painful, and left my lower lip permanently damaged with numbness.
My rheumatologist team said it was outdated and barbaric process
I have enough problems without having my lip cut open.
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Third and what I felt was the most likely outcome, I fully expected to be told that my Sjögren's is too mild to treat and that we needed to wait until I get even worse. And truly, I believe my condition is mild moving towards moderate, and I am nowhere near as dry or ill as these people in the Sjögren's online discussions are.
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At my appointment, the doctor walked in, introduced himself, sat down in a rolling chair right in front of me, and asked me for my symptoms. I had memorized a short list of the key things that I knew that I must mention. I had to get it right. My mental list was dry eyes and mouth, coughing, dry lips, problems with taste.
This is an approximation of what I told the doctor:
I have dry eyes and dry mouth. This morning I had trouble opening my eyes when I woke because of how dry they were. I just put a cough drop in my mouth, because otherwise, I would cough all through this appointment. My lips are dry and burn all the time, and the only thing I can tolerate putting on them is Vaseline. My sense of taste is off. Most of the time I can't taste processed foods properly. I think it's that I can't taste the flavor chemicals used in processed food. Sometimes I will have a short stretch where a food tastes fine, then it tastes awful again.
I no doubt don't have the exact order of what I said, nor do I have the exact words. I do know that I mentioned my sense of taste last, ending with the remark about the chemicals. The doctor listened to me as I reported my symptoms, and at about the time I began talking about my sense of taste, he wheeled his chair over to the computer and checked a box, which was no doubt the diagnosis.
He wheeled his chair back over and said, "Dr. ________ referred you to me because you tested positive for Sjögren's syndrome." He then asked me a few questions. He wanted to know if I was in any pain from my joints. My pain has been on the increase during the last six to eight months, ever since the dryness really started ramping up. I've had a lot of pain in my upper legs, which has been partially improved by adding a salmon oil supplement. I told him about that.
He asked another question about my joints and swelling, and I mentioned that I do have some puffiness around some of my finger joints. I didn't mention arthritis, and I have long believed that I was beginning to develop it. He looked at my fingers, but made no comment about whether my joint situation is Sjögren's or arthritis. I don't suppose it matters, since a rheumatologist treats both conditions.
He then proceeded to tell me about Sjögren's and gave me lots of suggestions about things I can do to help with the dryness, 100% of which I already knew and had already long been doing. I listened politely, relieved that it didn't sound like I would be told to get a lip biopsy. Whew!
As the doctor talked, he mentioned pilocarpine, which is a drug taken orally that can help with dryness in the mouth and eyes. I had already learned about it online. The doctor asked if I wanted to get a prescription for it. I said that I wanted it.
The doctor then spoke about hydroxychloroquine, which I knew was the main treatment for Sjögren's (and I'm sure most of you have heard of hydroxychloroquine because of events from 2020). He said that it slows the progression of the disease but doesn't cure it. Hydroxychloroquine will reduce brain fog and the pain associated with Sjögren's. He asked if I wanted a prescription for hydroxychloroquine, and I said that I did.
I was leery, because my thyroid medication journey was very difficult, having to go from one bad medication reaction to the next. Nevertheless, I have to start the journey for Sjögren's and will deal with whatever happens.
It's supposed to take at least six weeks for pilocarpine to help with dryness. The hydroxychloroquine will more than likely take at least six months to help, and that's assuming that I don't have a bad reaction to the generic drug.
I am relieved that my appointment went well and that I ended up with two prescriptions. My next appointment is in April.
