I was diagnosed with RA at age 65, I am now 74. First treated with NSAIDs then…..prednisone, enbrel, methotrexate, plaquenil, orencia, humira, remicade (and maybe a few others I’ve forgotten). These attempts took about three and a half years…none worked and I continually got worse, developed liver and kidney damage and severe joint damage. After a second attempt with humira (both times being stopped because it caused me to go into convulsions), my doctor decided to try gold injections.
I had two or three injections of gold, one per week, with only minor discomfort/uncomfortable feelings. But the next time was different…shortly after the injection I began to feel really wierd, told the nurse…and she said they would watch me very closely. The next thing I knew…I sorta woke up and was being attended to by two nurses and my doctor. I was soaked in perspiration-was being administered oxygen, was being given some injection in my forearm, and the first words from my doc were “man I thought we lost you.” I asked what he meant and he responded “no blood pressure, no pulse and no respiration!” In other words I was DEAD! (the injection was some kinda epinephrine/anaphylaxis antidote). They kept watch over me for several hours, got me something to eat…and made sure I was stable enough before letting me leave…and told me to call in a week or so to set up the next appointment.
The next appointment was set for a month later…during the interim one of my kids stumbled onto the road back website…I read up on the antibiotic protocol…bought several of the recommended books…and decided NOT to go back. Took the books to my GP (who was aware of all the above)…and she wrote scripts for minocycline etc…and I began. Now you gotta understand…at this time I was in severe pain, could not turn door knobs, could not shake hands, had trouble pulling my zipper up/down, walking/climbing stairs and getting dressed were excruciating. I started with 200 mg per day, and after about 8 months…unbelievably it got worse…yes, I began to go thru a herxheimer(sp) reaction…for about three weeks! Then I began to notice that I was getting out of chairs easier, going up stairs easier, my hands didn’t hurt as much as they used to, and these improvements went on for months.
My “road back” protocol was not conventional. I started with minocycline (100 mg, 2 times per day) and after about 8 months went thru herx, ( SLOWLY went into remission) stayed on two/day for probably 3 years, and then (SLOWLY dropped one pill per week for 7 weeks) stayed on one pill/day for another 2 or 3 years. After dropping to one pill/day I did have several flare ups and went up to two/day until flare up was well gone, and then slowly went back down to one/day. My doc suggested a switch to doxycycline to 1. See if I would remain in remission, and 2. See if the hyperpigmentation would go away. It worked, I’m still in remission and I have only a small area of gray/blue discolor near one ankle. So, in summation, I currently take one 100mg doxycycline/day…if I have a flare (occasionally happens) I double dose for time of flare plus maybe two additional weeks, then taper back down to one/day. I have been VERY fortunate….all the above happened under two different docs; the first in Columbus, Ohio and my current one in Pittsburgh, Pa. Both have worked with me on the amount/frequency of dosage and are/were very supportive. Oh yeah, both are GP/internal med NOT rheumatic docs.
I continued to improve, and at age 70 was feeling pretty good except for the damage done to my hips, knees, fingers and shoulders…so….I had my hips and knees replaced…rehab was a bear…but by 72 I was able to walk and climb stairs with only little pain. Still have liver and kidney damage, had a knuckle replaced…am now 74 and am doing better than I ever expected…am back to riding a motorcycle (I know, I know), scuba diving, sailing and in general enjoying life! If there is anything to be learned from my experience…it is this…NEVER GIVE UP…..THERE IS HOPE.