- CASE FILE
I have severe arthritis in ALL my joints, including my back, which has progressed over 15 years without treatment and is very debilitating.
ABOUT THIS CASE FILE
This disease started in 2004 when I woke up one morning with both hands swollen about 2 or 3 times the normal size. I went to work and tried to type but all I got on the screen was a lot of garbage. It turned out I had severe erosive osteoarthritis of the hands, carpal tunnel in both hands and dystonia in both hands. I had therapy for the dystonia over a year or more and carpal tunnel release. The rheumatologist at the time gave me doxycycline and that helped the pain and swelling enormously at the time. Nevertheless, the disease has progressed significantly. I still take doxycycline and it helps now but not enough. The disease has progressed over time as follows:
- 2004 – severe erosive osteoarthritis of both hands
- 2006 – osteoarthritis of both knees
- 2008 – arthritis of the 1st and 2nd cervical vertebrae
- 2010 – arthritis of both feet in the metatarsal bones
- 2015 – arthritis of both shoulders with a rotator cuff tear in the right shoulder
- 2017 – knuckles of my right hand are swollen, note: this is the first time a joint has been inflamed that was not symmetrical
- 2019 – arthritis in all of my spine
- 2019 – Probable arthritis in both hips as they hurt upon exertion.
I have a history of sarcoidosis and hashimotos but no doctor has looked at this arthritis through the lens of autoimmune. Could it be seronegative rheumatoid arthritis? The symptoms seem to point to that, for instance:
Joint pain, stiffness specifically in the hands but also in knees, elbows, hips, feet and ankles
Symmetrical symptoms and in multiple joints
Morning stiffness lasting longer than 30 minutes
Trouble getting to sleep and staying asleep (use marijuana for sleep)
I have night sweats and a fever of 99.2+.
All lab work is negative for RA and even inflammation. All labs have been normal except for a positive ANA but it is a low positive. On occasion I’ve had an elevated sedimentation rate of around 26.
I can’t take NSAID’s because I have gastritis. I was put on Plaquenil recently because the rheumatologist thought the swollen right-hand knuckles was RA or psoriatic arthritis, but Plaquenil gave me severe diarrhea and so it was stopped. After coming off the Plaquenil I realized it had helped the gastritis a lot.
I do believe that the arthritis I have is autoimmune and can be treated. The diagnosis of osteoarthritis just doesn’t seem to fit. From the research I’ve done, osteoarthritis affects a joint here and there but is never symmetrical. I’ve been told by at least 10 doctors that there is no treatment, just pain medication and that is limited these days.
No doctor has taken the time to do a real workup. I’ve gone from being very mobile to pretty much being home bound. I walk with 2 canes for stability and a scooter around the house and when I go out.