My name is Annette. I was 23 when I was diagnosed with RA. I ran two miles a day, three or four days a week at the time. When diagnosed, my doctor told me I could no longer exercise except for maybe swimming. He told me I would be in a wheelchair by the time I was 40. I was devastated.
As any trusting soul, I followed my doctor's orders though I refused prednisone for one year. After starting the prednisone I improved quite a bit. My doctor was pressuring me to start on plaquenil and methotrexate. I told him my husband and I wanted to have a family, he looked dumbfounded at me and said, "Well, why?" I was less than happy but we agreed I would only take prednisone and a non-steroidal anti-inflammatory (NSAID) until I was pregnant. After we'd had our family, I would start the methotrexate.
Four years, my husband and I tried to get pregnant. Every three months I was in my rheumatologist's office telling him, "not yet..." At the end of four years, I spoke with my gynecologist who said, "Come back in one more year!" I went straight to a specialist who took one look at my written history and said, "You'll never get pregnant on an NSAID. It does not allow the egg to be released from the ovary. Didn't your rheumatologist tell you that?"
I've been an RN since just before my 20th birthday. So like a good health care professional, I forgave my rheumatologist and asked him what to do without the NSAID while we tried to get pregnant. He increased my prednisone. I stopped the NSAID mid-July and was pregnant in September. It took only one cycle for me to get pregnant off the NSAID.
About six weeks after my baby girl was born, my arthritis and my health took a straight down nose dive. I was in so much pain and with so much swelling that I laid in bed and cried when my husband left for work each morning because I knew when the baby cried, I would have to move and the thought of moving was unbearable. Taking the tabs off the disposable diaper sent excrutiating pain through my hands, wrists and up to my elbows. My knees were swollen to three or four times their normal size and on fire not to mention the agony they caused me. I could not lift my arms or hold a comb to comb my own hair.
I found out from a doctor I've worked with for a long time, that anyone on low dose long term steroids (prednisone) needs a "stress dose" I.V. steroid with any stress (like 9 months of pregnancy and 17 hours of labor and delivery). My rheumatologist inadvertently omitted those orders after my child was born.
I was now in an "adrenal crisis." This is such a critical health problem that most people do not live through an adrenal crisis. It took me 18 months to begin to vaguely resemble the person I once was. I am now extremely skeptical of any doctor or treatment plan and research with my husband's help, every treatment I use.
An emergency room doctor gave me "The New Arthritis Breakthrough" in the fall of 1998. After careful reading and phone calls to the Roadback etc., I asked my (new) rheumatologist if he would prescribe the minocycline. Reluctantly, he did and even stated, "The only reason I'm prescribing this is that the FDA has approved it for use in RA."
The change in my health has been incredible! It took my husband two years and several hundreds of dollars to finally find a doctor (500 miles away) who would treat me with I.V. clindamycin. I started my first round in June of 2001. I'm now down to 3 mgs of prednisone and hope to be off by June of 2002. I'm beginning to forget what painful, swollen joints feel like.
I'm still working part time as an RN in a cardiac rehab (running and on my feet 8 hrs a day 20hrs/week) and keeping up with my 5 and 3 year old. I recently signed up for Assistant Coach for my 5 year old's soccer team, am walking 3-4 times a week and hope to be jogging by June with my next IV treatment.
I HAVE MY LIFE BACK!!! I'm 34 years old and nowhere near a wheel chair, thank you very much! My weakened immune system (from the prednisone) has taken it's toll. I've been to the ER with the flu and dehydration needing "stress doses." Last fall a virus caused me three weeks of incapacitating dizziness and the loss of 75% of my hearing in my left ear. But soon I will be off the prednisone and on my way to a stronger immune system. I cannot thank that ER doctor enough for getting me the news about antibiotic protocol! I just wish there were more physicians who honestly wanted to help their patients return to health and to vibrant life again!
Sincerely, Annette, RN, BSN
You can reach me at firstname.lastname@example.org