I am 32, from Maryland, and was formally diagnosed with Sjogren’s Syndrome and Raynaud’s within the past year. I was lucky (in a way!) that it was discovered by accident. I have had symptoms for years, but they were never severe enough for me to really dig into why. I’m also a compulsive “suck it up” kind of person.
Anyways, back in June 2016, I went to the dermatologist because my hair had been thinning and I was finally tired of it. They did lab work, which came back with a strongly positive ANA. When I spoke with my primary care doctor and we discussed some of my other issues (mainly joint pain and chronic insomnia), she sent me to a rheumatologist.
I’m really lucky - I love my rheumatologist. She took me seriously and ordered lots of tests. Luckily RA and Lupus were ruled out. (Backstory - I did competitive gymnastics for years, and have always attributed my joint pain to that.) After lots of tests, it was found that my SS-A was off the charts high.
I feel very lucky that I got a diagnosis as quickly as I did. My aunt has several (7 or 8)autoimmune diseases, and it’s been a battle her entire life to get the right treatment. For the most part, my disease is under control. I’ve responded very well to Plaquenil and Salagen. Those two medications have changed my life! I didn’t realize how badly I was feeling until I wasn’t feeling that horrible anymore.
This winter has been rough, though. It’s been really cold and I think it’s caused a flare. I’ve been tired and my body has been achier than normal. The aches have caused increased sleep problems. I’m on a bunch of medication outside of my SS treatment, and it feels like I’m a walking talking bottle of pills these days.
Welcome kittymeow! It’s great that the diagnosis process was so straightforward for you. And that your rheumy seems to be handling you well. It’s amazing, isn’t it, how when we have improvement it makes us realize just what things really were like.
I want encourage you to check with your doctor about getting a visual field test now and then least once a year because you’re on plaquenil. Over time there can retinal toxicity. Over long periods of time. I was on it 7 years with problem.
Also, how many kitties? We’ve got three of our own, plus two foster and one boarding. My house is extra crazy with cats because I have 2 cats that a friend needed to relocate due to a fire at her house.
I already have vision that is poor enough that I wear glasses, so I go every year anyways. The last visit, I let my eye doctor know that I am on Plaquenil now. They did a barrage of tests! I was there for about 2 hours. But at least my eyes are good! My eye doctor said that out of all the years he has been practicing, he has never actually seen a case of retinal toxicity due to Plaquenil. I felt better after him telling me that it’s so rare.
We are living in a very full (and furry) house right now. We have 7 cats. 1 is a feral rescue, and after a year and a half, he is still a big scardy cat. We brought him in when he was 5 weeks old and he never really adjusted to people. He LOVES my other cats, though. He bonded with one of my big male cats immediately when he came to live with us, so at least he has kitty friends. He is getting better with people. If the other cats are getting pet, he’ll come over and stealthily put his back where my hand is so I pet him too. He spooks very easy, but hey - at least he’s not a super clingy cat! We have a lot of traffic in our area and the feral cats have short and difficult lives. Even if he never likes me or lets me near him, I am just happy that he’s in a warm house with other cat friends to spend his days with.
We also have a senior cat who exclusively lives in our bedroom. She was abandoned outside when her owners moved and had to fend for herself for several months with no front claws, so when she came to us, she had some injuries and other issues. We aren’t sure how old she is, but we are guessing around 15? She has some arthritis problems, so we give her a baby aspirin every other day, which seems to help with her activity level. I usually give her “airplane rides” up on to the bed so she doesn’t have to try to jump. She also started out as a VERY grumpy old lady. She used to spend her days hissing and swatting at me when I got too close. After her joints started feeling better, she got SUPER friendly with me. She now sleeps with me each night and enjoys being pet. It took 5 years for her to become friendly, but all I care about is that she is spending her golden years in a warm and safe environment.
