I was diagnosed with RA in 1978.
I refused methotrexate and gold. I did take cupermine for the last 10 years and naproxyn (1500 to 2000mg a day). Before that I took Plaquenil, and a couple of other drugs that I don't recall. I tried Feldene and Oralflex but they were not good drugs for me at all. I worked my way through almost all of the NSAIDs from tolectin to motrin. Mostly they were OK for a while then became ineffective. I needed steriods in the knees every once in a while and used Medrol packs for flares on a pretty regular basis.
Since January 1997, I have been on Minocin 100mg Monday Wednesday and Fridays and oral clindamycin 1200mg on Tuesdays.
Calcium, magnesium, zinc, vitamins C, A, D, multi B, multi minerals, acidophilus, bio-flavids, flax oil.
I had the metatarsal and hammer toes rebuilt in my left foot.
The GP who diagnosed the RA took an interesting approach to education. He copied the pages of the Physician's Desk Reference, the bible of drug reactions, interactions and contraindications, for the drug choices he recommended, told me to read these carefully and take my choice. The The PDR is my first choice for information on any new drug and I highly recommend it. He also explained the five stages of emotion that are usually used with death are also applicable for serious disease - denial (I don't have a problem), anger (this isn't fair), bargaining (if I give something up will I get better), resignation and finally acceptance. I had a real hard time with the anger stage.
By 1980 I was in such bad shape. Although I did get to work, I had to basically chose between doing any housework and going to work. I had to think about what I was doing because if I had to climb the stairs more than once in a morning while getting ready for work, I'd practically cry all the way in to the office. I vividly recall sitting in my rheumatologist's office in tears waiting for my appointment and since I worked in a medical center, his office was only a very short way from mine. (I'm not a medical person, I do finance & money). It's not as though I had to travel any distance or deal with HMO people.
I rarely did much that was fun and didn't go out or see people. I felt pretty isolated. When I did go out, I basically pretended that all was fine and kept my hands in my pockets. They're in bad shape despite and maybe because of poor therapy and I acted as though nothing was wrong. I don't recommend this approach. Because I really never let anyone (outside of a very small circle) know how much I was really hurting, I didn't give people the chance to help me when they could have and it probably would have made things easier for me. But I'm just stubborn enough not to allow this.
The bad part of not complaining is that when things improve, those around you may not notice. And it becomes difficult to explain what it is that's improved. They say "Well you never looked like you were in pain". I know I'm not alone with this issue.
I try to follow Dr. Mercola's diet recommendations (see main page). I find some of it very hard but it's getting easier. When I fall off the diet, I do notice that I felt better when I was on it.
When my hands and wrists first began to get inflamed and hurt, I had a GP who recommended aspirin and rest. He told me I was probably just overdoing things and to slow down a bit. I had found a copy of Adele Davis's "Let Eat Right" about this time and figured that I'd better start "eating right". So I pretty much followed her advice. The basics if I remember were milk, meat and protein, including a lot of soy protein supplements and adding non-fat dry milk , wheat germ and yeast to almost everything. So here I was trying to follow this and gradually feeling worse and worse.
Over the next couple of years, I got to the point where looking at a flight of stairs because I had forgotten something was enough to make me cry and grocery shopping would leave me in tears. So, I changed doctors to a GP who was very helpful and made me aware of alternatives and really diagnosed the RA. The whole process really made me angry. Meanwhile, I kept trying to follow the recommended diet and feeling worse and worse.
Nightshades were being talked about as possibly being a culprit with RA so I carefully eliminated peppers, potatoes, tomatoes and anything with those things from my diet. This seemed to help for a short while, but in general I just kept feeling worse and worse.
A couple of years and several medications later, I found a lab that did what they called RAST or radioactive sensitivity testing. I had read about them in Prevention Magazine, but the lab is long gone now. The rheumatologist I had when asked about it agreed but had reservations on the results being helpful. A week of food not usually eaten was requested; no coffee, no wine, no drugs and they took several large vials of blood. In a week or so the results showed that I was highly allergic to beef, wheat, soybeans, corn, yeast, milk and all dairy products. In fact basically my diet.
I was astonished and accepted that maybe what I'd been eating wasn't ideal. So, I revamped again now, staying away from all those things and trying to limit a type of food to once every four or five days. The theory is that the rotation apparently keeps you from getting sensitized to the foods. This seemed to help, slowly, and I continued to make changes one at a time. Slow testing seems to let me determine whether or not the change is helping before I confuse things with a lot of changes at any one time. Anyway, my theory is save your self a lot of aggravation. Take things slowly and listen to your body. In many things it's smarter than you are. I now find nightshades are not any problem. I try not to eat them every day, although I'd love to.
Anyway to the present:
I am no longer scary to look at. My face is not tight and gaunt, although I'm still thin. The bones in my shoulder used to stick out, but they don't anymore. When I walked, before about June of this year, it was like walking on sharp stones in your bare feet. Things have improved to the point where I can actually walk across the front foyer tiles in my bare feet once in a while.
My mobility is much greater. I found I could do a dancing exercise that years ago I'd given up hope of ever doing again. (I was a dancer during college). I can pick up my grand children without hurtng myself. Thanksgiving dinner for twenty-three didn't wipe me out. In fact on Friday I didn't even need an Aleve. That's why I knew I couldn't say grace this year, I'd cry and then I'd have to explain and I'd rather not have to do either.
Update April 99
I am now on Minocin 3 times a week only. The good news was that my SED rate had come down from 110 (in January 97) to 40 (April 99), and more telling as an indicator, I don't need any of the NSAIDS on any sort of regular basis. In fact, at this moment, I don't even have a bottle of Aleve in the house or in my desk drawer. I find this startling when I think about it. I used to take 2000 mg of the prescription strength naproxen just to get through the day. Even better, I wake up with the birds and can get out of bed without effort and without my feet yelling as they touch the floor.
I can still overdo things and am working on building a little more exercise into my routine. A lack of strength from many years of not moving needs to be dealt with. However, a little at a time. I have noticed that when I stick to and follow the diet recommendations more closely, that is, more vegies, more water and no sugar, I feel better than when I have broken into the OREO's (and I find I really don't even like the cookies anymore, they are too sweet). In fact, I find that in moderation, real foods that used to be a problem now are not, but sugar is a problem.
The real delight is in all of the wonderful progress. I can go up stairs two at a time and do, sometimes, just because I can. I can pick up my ever growing grandchildren without effort. And I'm looking forward to a great gardening season.
Update July 1999
Continuing good news. This week after semi-annual blood work, the good news is a sed rate of 27. I already knew that it would be lower than last time, just based on the amount of energy I have and the way I feel. I am beginning to regain some movement in my wrists which still allow for extrememly limited motion.
The antibiotic protocol and the diet recommended by Dr. Mercola all get credit, however, I will take the bows (because I can).
Update January 2000:
I am still taking the Minocin three days a week and attempting to stay on Dr. Mercola's eating program. Over the last year, my average weight has increased a little and I find I have improved in other ways.
My engagement ring, which is a size 5, again fits on my finger after many years. My 15th anniversary ring is a size 7 1/4 and during the years before I started the progam, I had rarely worn it as my knuckle was too big for it to fit over. I now need a filler thing in my larger rings.
The best news of all, my husband and I went dancing. Three hours of foxtrots and waltzes and polkas. And no after effect, except for feeling "marvellous".
You can reach me at firstname.lastname@example.org