So my journey with RA is a long one, so make sure you're comfortable if you decide to read on! Smile
I recently turned 27, btw. I got sick when I was 22.
In
Feb. 2002, I got sick. I was exhausted, achey, and just sick. The
weirdest thing, though, was the severe joint pain. My wrists hurt to
the touch and my ankles were so painful, stiff, and swollen that I
could barely make it up a flight of stairs. I knew something was very
wrong, and went to the doctor at the school clinic. I was treated like
a basket case, but I did insist on them giving me a mono test. After I
didn't hear anything, I went to my regular doctor. He took me seriously and ran a bunch of blood tests.
Everything came back normal, and my x-rays only showed slight swelling
in my hands/wrists. However, my doctor said that, despite the lack of
blood tests to prove it, I seemed to have rheumatoid arthritis. Knowing
I had no insurance, he just told me to take a TON of OTC ibuprofen.
This led to major water-retention, so I was later given a prescription
for Vioxx from the doctor at the school. My regular doctor retired
around this time, and after researching RA (and finding out that my
father had been diagnosed with it a few years earlier), I made an
appointment with a local rheumatologist.
I first saw the
rheumatologist in May 2002. After speaking with me, he seemed surprised
that my bloodwork didn't show any signs of a problem, but he
immediately began treating me with MTX. I began resting, but I seemed
to be getting worse. I was in a lot of pain and felt like I couldn't
stand for more than 5-10 minutes at a time. My rheumatologist continued
upping my MTX. He eventually recommended Remicade. I began infusions in
October 2002 (while continuing MTX and Vioxx). The Remicade helped a
bit, but I still had a lot of pain, and my rheumy even put me on
unemployment/disability. In this time, I had gained I believe 50+
pounds and was looking awful.
My grandmother took me to a chiro/holistic healer in Dec. '02 who declared it wasn't RA but actually an MSG sensitivity. He took me off all of the meds (including my Effexor...bad move because that should be tapered). I began living like I didn't have RA. For three years, I ignored all signs, blaming my problems on being out-of-shape, poor eating, etc. I ended up getting a physical last fall because I needed to get a doctor (hadn't seen one in three years). My doctor was concerned by my medical history and ordered a bunch of bloodwork. My ANA titer was high, but the rheumatoid factor wasn't. She sent me back to my old rheumy (Dr. B), who I began seeing in Feb '06.
Dr. B said that he still believed it was RA and immediately put me back on MTX. It took some of the edge off. He put me back on Remicade. That's when things got worse again.
Ten days after my first infusion, I was COVERED in severe hives. The other rheumy in the office gave me pred. and told me to take Benadryl. I had my second infusion a week later, as scheduled. Near the end of the infusion, I became extremely nauseous and was given phenagren. An hour after my infusion (after getting home), I began projectile vomiting. I told Dr. B about this before my third infusion, so he pre-treated me with oral Tylenol and Benadryl. Moments into my infusion, I experienced anaphylaxis and had to be given an Epi-pen to stop my throat from closing up. The nurse still wanted to give me more Remicade (after giving me some steroids), but I refused.
I again turned to alternative methods and tried to ignore things (beginning in June of this year). I began flaring again in late September (the past two weeks have been miserable). Because I'm still not comfortable with Dr. B's lack of concern for obvious allergy symptoms, I went to my GP a month ago to get a referral to a different rheumy. I'll be seeing him in a little over a week.
If you read all this...you rock!
Oh, btw Its "phenagren" and it ROCKS. LoL I love that stuff and so does my tummy!
Uh..yeah...holy crap! I would be in the market for a new RD too...wow..so where do you live?It is amazing to me how difficult it can be to find caring, competent doctors who take people seriously.
I am sorry for all you have been through and YOU SURELY DID THE RUGHT THING IN LOOKING FOR A NEW DOC!!!!!!!!
Good Luck
WOW! You for sure need a new rheumy! I have heard of a lot people with a reaction to remicade. What is up with that doc putting you back on it after yoour throat swelled? Where did he get his MD? Bottom of a cracker jack box? Sheeesh! Good luck to you and finding a new rheumy that will treat you properly!!Its posts like this that make me thankful to be in Canada with decent Doctors that care for the person first. I havent had one issue with a Doctor, either GP or Rheumy.Hi chystalina,
I had a similar experience, except I did take Remicade for 16 months. Then I began to have a reaction at the beginning of the last three infusions, which would back off after a few minutes until I got home, at which time I would get very sick. I told the rheumy, but he would not admit it was the med. The last time I had it they had to call 911 and take me to the ER for anaphylaxis. The nurse and doc freaked out and ran around like chickens until I passed out. When I came to I was in an ambulance.
Good luck with your appt. Hope you've found a good doc. I'm still looking. auntiannie