Hi- So I've joined the lupus club this year- diagnosed in July 2017. First I was diagnosed with ITP in 2009 and likely had low platelets for 2 years before that. Then in 2015 while on Nplate, I began having random angioedema- swelling of the tongue, lip. We stopped Nplate thinking I was allergic to it. Started on Promacta but I continued to have the swelling episodes. Stopped Promacta, and stopped all over the counter drugs. Still had the angioedema, sometimes I had a very itchy small hive spot along with it. Went to an immunologist- no allergies to food. Hematologist then directed me to a rheumatologist. It took me over a year to find one and get an appt. In the meantime, I had a couple episodes of what I now know were flares- fever/chills, joint pain, muscle and nerve pain, peripheral neuropathy, malar rash, fatigue, ocular migraine, eyes sensitive to light- the list goes on! It sounds bad when you list the symptoms, but all fairly mild. Similar to a cold or flu but at the same time clearly unusual and different from a virus.
I got extensive blood testing at the rheumatologist. They tested for three RF rheumatoid factors- I was positive for all three (along with inflammation in several joints). So was first diagnosed with RA rheumatoid arthritis. I had positive ANA with speckled pattern which the rheumy says is most often associated with Sjogren's syndrome. That plus malar rash, mouth ulcers, RF positive, angioedema and urticaria, added the diagnosis of Sjogrens. And she said I meet the SLE criteria with ANA positive, ITP, malar rash, oral ulcerations, inflammatory arthritis. The neuropathy she said could be either SLE or Sjogrens. She was clear it was a Sjogrens/Lupus overlap rather than one or the other. I then did an Early Sjogrens panel of blood tests.
I started on 200mg hydroxychloroquine (generic Plaquinil). Rheumy wanted me to start on methotrexate but I don't see the need for it and don't want to suppress my immune system at this point. Plaquinil helped the neuropathy- its mostly gone so thats great! It was maddening, like being bitten by fire ants. I mostly feel totally fine and not fatigued. I just sometimes have symptoms that flare up enough for me to take some prednisone- 5-10mg. Thats enough to take the edge off. I only take it for one day so don't need to taper. STRESS is absolutely a factor. I really see the lupus/stress association- working too much, too many demands from people, lack of sleep. I had the dry mouth and eyes of Sjogrens pretty bad in Sept, and noticed it would get much worse when I talked to certain people- like my mother. Not all the time, just when my mother is demanding. I had some noisy neighbors for a while and that was hard on me. So I'm identifying how certain kinds of stress- people and situations will trigger me.
Diet is a factor too. I'm still trying to identify what causes inflammation for me. Potatoes and pasta are NO good- I'm stiff the next morning after eating those bad boys. White bread and oats don't work for me. I'm pretty much off dairy, and mostly vegetarian now. I'm off sugar and LOVE that- it feels so much better plus have lost weight. But the holidays are here and I find myself slipping. I do feel better with a simple diet of mostly vegetarian and no sugary sweets. I meditate also and that helps a bunch. I keep a journal of symptoms, foods, stress, gratitude- it helps me to see the patterns.
I also notice that flares sometimes come along with a cold or virus. So I can't control everything but trying to do what I can to manage and help myself. Hoping to keep the drugs at a minimum. Would like to hear anyone else's experience- how are you doing?
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
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Your symptoms sound a lot like mine. I got hit with neuropathy like that about six months after my diagnosis. It randomly began one morning when I got in the shower. I felt like I was being stung by hundreds of bees (or fire ants). It lasted about 4 or 5 months and then resolved to a point. I have paresthesia when it's cold outside and my hands and feet tingle and go numb. If I'm out in the sun, the neuropathy comes back for a few days in arms and legs. I'm very sensitive to both hot and cold weather, but in the winter, I feel like I have the flu every single day. My main problem is muscles and joints. It's so painful that it hurts to move. I usually have to go out every single day and sometimes it's so bad that I just sit in the car and don't want to get out. Some symptoms come and go with Lupus but this has been my constant for the past 12 years. I also have the Sjogren's/RA overlap. I tried Restasis but it didn't work. Oddly, wearing contacts helps the most - it keeps the air out of my eyes. The RA is destroying my knuckles. The joints are swollen and I have trouble using my hands. Oh the fun!
I have problems with nightshades for sure....tomatoes especially. They set my muscles on fire from inflammation. I really need to get off of sugar but have way too much stress going on. You know how there is a list of the most stressful events a person can experience in life? I'm going through all of them at the same time and have been for two years. I don't see an end to it. I've been getting a lot of ocular migraines lately.
Good call on the Methotrexate. It is one horrible drug that did nothing for me except cause permanent side effects. I will never go near that drug again. I did the pills first, then switched to the injections. Steroids help me the most, but the doctors keep limiting that which makes me mad....I have to be able to function. I was doing Soumedrol IV's but oddly they didn't help, just caused horrible bone pain for two days after the IV's and I couldn't sleep. Then I ended up with pre-diabetes and stopped doing it. I've tried just about every drug there is except for Benlysta and I won't go there. I had too many problems with Rituxan so no more biologics for me.
I hope your symptoms continue to be mild and controllable. This can be difficult to manage at times because there are so many things that can't be fixed.
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