Discovered this website yesterday and spend hours reading all the messages. So happy to communicate with others dealing with these problems.
Diagnosed with RA & Firbo in '03 by rhumie. Prior to that time was seeing MD. First problems occured in '01. Woke up one day with hands red, swollen, and in terrible pain. Dr. said it looked RA but did no tests. Gave me the Methyl/Prednisone Tablet pack for immflamation and sent me on my way. He retired and I went back to new MD with chronic fatigue. He tested me for mono, thyroid problems, anemia and all came back negative. RF test was negative. He attributed it to stress. After going to see him several more times, he finally referred me to a rheumatologist. She advised me I most probably had arthritis of some kind but it would take time to determine what kind I had because she said there were around a 100 different kinds. My blood tests showed me to be seronegative to RF factor. She put me on Celebrex 2X's a day and 10 mg Prednisone.
She moved to Dallas and I had to find another DR. The new rhumie took MRI's of my hands. She said I definitely had RA and erosions were already showing although and she shared that my test for RF was seronegative and about 30-40% don't show up positive. Apparently my MD didn't know this. Finally, a diagnosis!
She put me on Methotrexate, around 5-6 pills once a week, 10 mg Prednisone, Celebrex 2X's day. I might add I was also on 40 mg Prozac during this time as well. During this time with a compromized immune system, I developed MRSA, the flesh eating bacteria. Several red dots, like a mosquitto bites came up on my body. One on my high thigh at almost my buttocks, one at my bikini line and one near my underarm. I went to the MD and he gave me a high powered antibiotic. Within 2 days I had a low grade fever but the sore on my buttocks looked with a volcano with a hollow center. The sore at my bikini line was the size of a half dollar and the sore near my under arm was the size on a tennis ball and there was fever, swelling and redness extending to my breast ducts. Went back to the doctor to have it lanced. When he saw it, he put me in a wheelchair and took me down to a surgeon's office down the hall. He said I had to have immediate surgury and I was septic. Around 11;30 that night I had surgury. They culcured the bacteria and found I had MRSA. You have to have your wounds cleaned daily. They give you morphine because it is painful. You are kept in isolation in the hospital. Finally after two weeks they sent me home and I had nurses come in and cared for me daily and cleaned the wounds. I took vancomyacin IV's at THE HOSPITAL and at home and Zyvox in a pill form at home. The RX cost for the antibiotic was nearly 00. My co-pay was around .
After recovering from all that I was scheduled to try Remicade. They gave me a TB test and it was positive! Have the germ, not the disease. Started on the antibiotic called INH. Due to this turn of events, she told me I was not a candidate for the drug. Apparently people who have ever been exposed to TB have been activated by the drug and died.
I am currently on Sulfadine 4 tablets @ 500 mg ea., Mobic 7.5 mg 2x's a day, (INH) Isoniazid 300 mg daily for TB exposure, Tramadol (Ultraset) 50 mg 2 tablets 2x's day, B-6 to counteract negatives of INH, and take 40 mg Prozac for depression. I have Elavil (Amitripyline) 1/2 tablet at night to help me sleep. I wake up alot with paid in the night but I don't like the drug because I still feel too drowsey in the am. I RX for Ambien the sleep aid and I take occasionally to hel;p me sleep when the pain is great. I doesn't make me sleepy in the day and I awake refreshed not groggy. I also take a hormone Activella 1 mg.
Currently recooperating from a bad flare. Missed week and a half of work. On Methyl/Prednisone Tablets, you know, 6 one day, 5 next, down to one. Had been tappering off of Prednisone and probably contributed to my flare.
As for my feelings, sick and tired of being sick and tired. Went from being top financial advisor in my brokerage firm to barely being able to eek a living. Have an 8 yr old son and daughter in last semester of college. Also was caring for an elderly aunt that's 86 that came to live with me cause she was facing a nursing home and I couldn't let her go there. She is severly crippled with both RA and Ostioarthritis. I remarried after my divorce from kids dad, but been separated from my husband for almost 4 years.
Anyway, I've ran on long enough. ....... I'd like to converse with others in my situation .
Dear Karen, it is nice to meet you. I'm sorry to hear about all of the health problems you've had and continue to struggle with. I know that you'll find a lot of support here, and others who understand what you are going through. I'm Juliah, newly diagnosed with RA, have a son, husband and a dog. I look forward to getting to know you. Love and hugs, juliah
Karen;
Welcome to the group. We're glad you found us...but certainly not glad for the reasons you did. It sure sounds like you've been through a lot. I imagine you have a great deal to contribute to this forum. We all learn so much through the experiences of each other.
Welcome.
Lovie
Welcome Karen,
It doesn't sound like your immune system was just compromised, it sounds like the meds practically wiped it out.
I thought my 2 bouts with infection were bad enough, but they were a piece of cake compared to what you have gone through. I had infection that started in my jaw and spread to the rest of my head and neck. Each time I have had to have a molar extracted to get down to the infection. The second time the antibiotics weren't doing the job, so I was switched to another one called Biaxin to which I had a psychotic reaction. I'd never heard of such a thing! An antibiotic that could cause psychosis? I talked to people that weren't there, stayed awake for 48hr straight, saw giant bugs on the walls and started to plan suicide. Naturally, I didn't tell anyone everything that was going on in my head.
I was afraid to restart the Enbrel, since I have not completely come back after each infection. My stamina has declined each time.
I have been on SS disability for 8 years. Before that I worked in the Operating Room. You can PM me anytime if you like. Barb
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