I’ve been doing some research into the treatments for Rheumatoid Arthritis, and the options are mostly crummy. Even the more innocuous drugs seem to have long term use risks, which don’t thrill me. I’ve been on sulfasalazine for several months now (I think I started in October), and I’ve not seen any good results yet. It takes time. So I looked around some more, and found a somewhat old school yet unconventional treatment, which is long term tetracycline use. You take a low and slow approach, taking 100mg of a specific tetracycline 3 days a week. Like other RA treatments, results come about slowly slowly slowly, often 6 months or more, sometimes a year or two. When I looked at the roadback website set up for followers of this protocol, I saw a ‘current protocol’ and an ‘historic protocol’. Current says take 200mg daily, historic is the more intermittent dosage. So I took this information to my doctor, and said I’d like to try it. She doesn’t have a lot of faith in the treatment, doesn’t think it will likely work, but she is willing to let me try it, and wrote me the prescription that I wanted. She prescribed it for 200mg daily, which I took for a week. I felt like crap. Somewhat sore, but really nauseous and sick to my stomach. So I looked a little more closely, found the intermittent dosage, and decided to try for that instead of the amount prescribed.
No difference is pain as of yet, but the feeling like absolute crap is gone since cutting back on my dosage. I’m glad for that. I gave myself a treat this weekend, and took some prednisone Friday and Saturday, which really is wonderful and takes away so much pain, and gives me a reasonable amount of energy. I cleaned up the back yard. I did some other chores. I felt like myself. I love that stuff. I do wish that I could stay on it, but I cannot. It’s too dangerous. So I took a smaller dosage yesterday, and a smaller still dosage today (you’re supposed to taper off, not just go cold turkey).
So now it’s back to no prednisone, giving the antibiotics a chance to work. Apparently tetracycline does not give you issues that some other antibiotics give…no resistance to antibiotics, no yeast issues. I am taking a probiotic to help my gut.
A lot of the people on the website say they get marked relief from going gluten, sugar, and dairy free. I tried those, and saw no difference. I had some blood work done awhile ago to look for food intolerance. I’ll wait to hear what the test results say before I decide whether to give these another try or not. I’m happy to eat more healthfully, but am not eager to eliminate entire food groups, so hopefully that won’t become necessary. I do see that for many people, they only need to restrict these food groups when in a flare, and most of the time it is not necessary. So that’s another consideration. A lot of people on the road back website discuss lyme disease, leaky gut syndrome, and so on. I don’t have any symptoms of lyme nor leaky gut, except for my RA.
I’ve tried several things to help. Acupuncture is known to give some relief, but didn’t help me. Vinegar and honey helps some people, but I haven’t noticed relief. Diet changes have made no difference. Yoga helps some, at least to relief stiffness. It doesn’t do a lot for pain. Swimming helps with energy and stiffness, but again, not much of a pain reliever. I’ve gotten into hot tubs twice, once with immediate relief, another time not so much. I even resorted to taking a bath (with epsom salts), but I hate baths so much, it just made me tense, which is the opposite of what it’s supposed to do. I’m taking turmeric, fish oil, and vitamin D. I’m thinking I should try some kind of meditation, but I haven’t gotten there yet. I have had a couple of massages, which generally feel good, but don’t help my joints. I am hoping that the antibiotic treatment works, that I can get off of the sulfasalazine, and get my groove back.
I’ll tell you, this whole thing has been an education for me. Not necessarily one that I wanted. I feel sort of like I’m bouncing back and forth between snake oil salesmen and big pharma. I don’t ally myself strongly either way. I’m all for figuring out the least harmful way to help yourself, and trying to go from there. Wish me luck.