Hi everyone, serious question here.
Why would my rheumatologist prescribe Plaquenil with a low ANA and no definitive diagnosis yet? Thanks for reading!
Hello, In the year of 2001, I woke up unable to move due to joint pain/stiffness in both knees, elbows and hands. At that time I was separated with a 2 yr and a 6 year old. My 6 y/o was a trooper and called her grandmother for help because I was unable to. Doctors had no idea of the cause and put me on the dreadful prednisone. Issue resolved for about a month and I flared again. Eventually I was referred to a Rhuematologist and for years he had no idea what I had but he knew it was autoimmune related. He started me on plaquenil and nsaids. At one point he was leaning towards lupus, RA or both. More symptoms began to appear. I became totally deaf in both ears and began to have bad bouts of vertigo. Fortunately the hearing loss was not permanent but can only be treated with high doses of prednisone 60 mg. They have stated eventually I may loose all hearing. I went from having normal hearing to currently profound/severe hearing impairment and I’m wearing bilateral hearing aids. In the last 8 to 9 yrs, I’ve been totally or partially deaf one time too many. It’s scary enough to wake up dreading whether or not you’ll have a good day or not, so imagine waking up fearing you can’t hear as well. Autoimmune disease are just tricky sometimes and hard to diagnose. Especially, if you are not a text book case. As for me, all of my test (Ana, Rf, C-reactive protein) were w/in normal limits. It wasn’t until I had to get fluid pulled off my knees and tested they were able to confirm I had some type of inflammatory disease. On more than one occasion my synovial fluid wbc was extremely high. I also began to have chronic uveitis. I shared all of this to tell you from 2001 up until approximately 2 years ago (15years later) I received a definite diagnosis of rheumatoid arthritis. I also have autoimmune hearing loss disease and mineres disease. From my understanding, when a doctor doesn’t have a definite diagnosis of RA or Lupus but strongly suspects you may be developing such. plaquenil is a drug of choice be cause it’s a disease modifying drug and treatment for these conditions are practically the same. It’s been a rough ride for me. You just have to stay positive and keep pushing forward. Best of luck to you.
I have been resisting taking RA medications without a definitive diagnosis. I had one positive RA blood test, but others have came back negative. I am unable to take the Sulfasalazine because I am allergic to Sulfa. From what I have read , supposedly its the safest, I Just take the ibuprofen at night to help with pain at night to sleep and movement during the day. The side effects of the RA meds scare me - however, I dont want to cause any long term damage either.
Since posting this, my doctor diagnosed me with undifferentiated connective tissue disease and strongly believes I am in early stages of Lupus. 4 Rheumatologists, many other specialists, 10+ years of tests and thousands of dollars in medical bills and maybe I have a path to well being? Fingers crossed friends. 👭
@A myRAteam Member, it sounds like you are following a similar path as I did. My doc, when he suspected lupus, also diagnosed connective tissue disease. More than 30 years later, and definite diagnoses of SLE by two top rheumys, I also developed inflammatory arthritis, RA and Rupus. The Rupus is a corss between lupus and RA and attacks the connective tissues, mostly. So, the original diagnosis in 1985 seems to have also been correct. I'm not saying you will follow my path, I don't nkow anyone else who has. I'm just seeing connective tissue disease come up more often now. It was not well known 33 years ago.
Many, many years ago my rheumy prescribed plaquenil for me before he had a definite diagnosis of lupus because his gut told him he was right. The idea was to try and slow the progression of the lupus and combat some of the inflammation. This was also to try adn keep me off prednisone for those reasons. In the end, a few years later, he was correct - SLE. My RA didn't come about until more recently and I cannot go back on plaquenil. I will tell you that I could tell it was working in the background and when I went off of it I was miserable. Keep in mind I had been on it more than 20 years at a very high dose, especially after the SLE was confirmed.