Registered: 1489364872 Posts: 5
Hello everyone! My name is Rachel and I joined the group a few weeks ago. I recently had an appointment with a doctor at the rheumatology department at Johns Hopkins for a second opinion on my autoimmune issue. After reviewing my records and doing a physical exam, she stated that lupus is a possibility. She ordered some labs and I have a follow-up appointment on April 18th. In the meantime I've started on Plaquenil, which I tried in the past, but stopped due to side effects such as ringing in the ears. I have never taken Plaquenil for more than a month so I'm interested to see if taking it for several months will help my symptoms. I was diagnosed with UCTD in 2013. I have had positive ANA on many occasions as well as SSA-Ro. My symptoms are fatigue, achiness, muscle weakness, periods of hair loss, sun sensitivity, brain fog, shortness of breath, back pain, etc. In retrospect I believe I have suffered with many of these symptoms since my teens. I have mixed feelings about my appointment on the 18th. As others have mentioned, it would be a relief to finally know what's wrong with me, but on the other hand, I am fearful of receiving a more serious diagnosis. I'll let everyone know what I find out after my appointment. Thanks for the support!
Senior Contributing Member
Registered: 1418247040 Posts: 3,497
I have a lot of respect for Johns Hopkins so please keep us posted... Keep in mind that Plaquenil can be harsh on your belly so be sure to take it with food. Also, as I am sure you know, sun avoidance is a must. Regardless of the name, UCTD or Lupus, you will likely be on the same treatment plan. __________________ When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies.
Registered: 1490230191 Posts: 221
I am new here too. Also dx with UCTD right now (and discoid lupus), so I know where you are coming from. Also started on Plaquenil. Hopkins is fabulous by all reports and I know someone that goes there. I am sure you are in good hands. I go to HSS in NYC.
Registered: 1490110144 Posts: 56
Rasunder, welcome. Your feelings are real with having fatigue, achiness, muscle weakness. And you mentioned having these symptoms since your teens. I certainly hope that your appointment at John Hopkins will be a relief in finding a dx and confirming your symptoms. It's always the fear of the unknown for me. Everyone has different symptoms with their autoimmune diseases.
It's always good to reach out to others who understand. Keep posting.....