Welcome to the Lupus Research Alliance community!
Lupus Research Alliance
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Welcome to our lupus community online forum, where people with lupus and those who hope to learn more about lupus can connect with one another for information and support. This site was developed so that you can share your experiences, insights, stories, ask questions, and learn from others who have had similar experiences.
This forum is a public space. Posts that are not listed in the “Private” discussion area are searchable online to enable others with the same questions to find and join the community. If you would like to protect your privacy and remain anonymous you can select an alias as your username.
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Comments
thank you.
Thank you for the opportunity to share views, symptoms, opinions, etc with caregivers and patients like me. I was diagnosed in 2016. I have Lupus Antiphospholipid Syndrome, Kidney disease and mitral valve regurgitation. I believe I have some of the best care in the world as I live in Boston, Massachusetts. I like forums and discussions. Hope to hear from some patients with similar lupus symptoms as we are all so unique.
Happy World Lupus Day.
I think forums like this are a nice way to mitigate the isolation that can sometimes accompany chronic illnesses like Lupus. I'm looking forward to chatting with everyone!
Good luck with your search for answers!
If you'd like more general information about lupus, we have some additional resources available on the Lupus Research Alliance website: lupusresearch.org
Thank you all again for participating in the forum and sharing your experience with the community.
Any advice, help, suggestions, whatever is appreciated.
Not sure how these numbers work, but my ANA is 1280.
I was put on plaquenil immediately, and it had been much better within a few months. I learned it was best to get back on it as i once took it for suspected RA in the past and had to go off it which hurt my joints, but I wanted to try something natural to help it.
The ana test came back positive after I developed something called tenosynovitis causing bad thumb swelling like big marbles in my thumb joints and I was told by the dr that I needed an ana test. When the doctor tested for ana i knew I had the test in the past, i think, just a few years ago and did not know it could turn positive at some point so soon. I was told that it can happen pretty quickly and I remember thinking then about all these rashes and symptoms I was having.
When I went back on the plaquenil, I felt so much better after a few months. My joints went from unbearable pain to tolerable at that point. It was better than the improvement i had when i went on it before within maybe a few months. My rashes were better, and the weird pleurisy cases just went away. I even had a few less migraines when I had been having them almost daily. I guess sometimes treating your condition the right way has good effects on other things.
I went to a rheumatologist and was told the ana was the same and that the titer? didn't go down or up on the repeat test. The rest of the bloodwork was okay. I was told the Plaquenil is controlling it well and although I still have pain and rashes, my platelets finally went up to to within the normal range. The specialist said stay on plaquenil, and now I am worried with what is going on with the shortages when I run out of this since it helps me. If i miss one dose it is painful.
I had these symptoms among others for years and never dreamed I'd get news like this because I thought I knew what was supposed to be wrong, a diagnosis of possible rheumatoid arthritis from a rheumatologist years ago, although the rheumatoid factor was negative. However, i did have a lot of inflammatory markers up on some bloodwork. I remember the rheumatologist nurse practioner once suggested seronegative lupus, not rhematoid arthritis because of my symptoms at one point. They werent as intense as last summer, but they were bad. The new rheumalogist believes that I could have had a much milder or maybe borderline or seronegative case at that time and that my symptoms could be easily overlooked because lupus, and just about any lupus like condition, can mimic a lot of other things.
I also feel like bloodwork changes a lot with this.
Until several months ago, I've never dealt with low platelets or other abnormal bloodwork like this. It did eventually get better, but that was the scariest thing because it was affecting my platelets and causing causing inflammation in my lungs. I am still coping with this news from last summer, and I am dealing with the fact that I have this, but I am relieved to know something because this explains a lot of my symptoms that have been a part of my life so long.
I feel for everyone who has their pain overlooked by this because I experience this all the time. I get that people may not fully understand that lupus, or any other autoimmune issues or disabilites, but I don't understand why people have to act like I am overeacting and like if they can't see my pain, it's not there. I have learned to just try to filter out the negative words of others because just because they say something I know isn't true, it won't make it it true no matter how much they say it. Just knowing that can help a lot. When I was told i had lupus, that could turn serious, and it's something i have to take one day at a time right now. This is hard, but I'm trying every day.
Stay strong , knowing that you are not alone. Lupus symptoms are real, ignore negative comments. Good luck and stay well.