Hoping to find someone that can relate

[nikilotta7]

Hi everyone. My name is Niki. 30/f I was diagnosed with Rheumatoid Arthritis in September 2009 after changes in my fingers. Originally, it thought the pain in my body was due to the rickets and hairline fractures I had been diagnosed with a few months before that.

Since then my RA has rapidly progressed, even shocking my rheumatologist. I can barely walk more than a few feet at a time. I may be purchasing a cane in the next few weeks. It has spread from my knuckles to wrists, elbows, knees, ankles, shoulders, hips, neck, and now lower spine. Has anyone experienced or know of someone who has experienced this? I'm currently still only on plaquenil and prednisone. I have been riddled with infections since before my diagnosis. Currently I have sinus infection, bilateral ear infections, bladder infection, and a slight fungal infection. If I ever get cleared of infections I can go on infusions or injections but I'm stuck til then.

I also have rickets, insulin resistant PCOS, asthma, chronic bronchitis, hypothyroidism, eosinphil esophagits, unequal pulses, and migraines. I also have already had my colon, appendix, and gallbladder removed.

For once I would like to not hear I'm a rare or unusual case. I guess I'm joining to meet others and maybe get some hope. :) I'm feeling a bit frustrated at everything.

[kageyd]

nik, plaq and pred can both suppress the immune system, which may be accounting for the infections which then develop.

You need to get to the FaceBook RA group asap, where you'll find a lot of useful discussion.

I am NOT a doctor, but with all those different organs and tissues removed I have to wonder if you're not suffering all kinds of auto-immune diseases. I would do everything I could if I were you to get to a major research hospital, like a Mayo, or one of the university medical school affiliated hospitals, and get them working for you as a team. One doctor at a time is not going to be able to deal with all those issues!!

[nikilotta7]

Thanks for your response. I am on that board now too. I currently have a primary, a rheumatologist, two gastro drs, a pulmonary specialist, and neurologist. :s My uncle has a similar case but without organ removal and has been to Mayo with no help.

I actually have been having the infections since before I started treatment or was diagnosed. I don't know if that is part of the RA or not.