Rheumatoid Arthritis

Susan 2005 USA

Six months ago I was depressed, thinking about killing myself, had pain of 9 on scale of 10, could not walk, felt any quality life was over. Today I do still have light symptoms but nothing like I had before. So, six months after starting AP, I am almost pain free, walking on the beach and looking forward to getting even better. My story is rather long but I think a lot of new users want to know that what has happened in their rheumatologists office is not uncommon. And some of you will probably be on drugs that I used to take. Here is my story: Over 4 1/2 years ago I was diagnosed with RA. I saw my first rheumatologist who gave me prednison and tried me on several NSAID’s. I was in terrible pain and my knees always terribly swollen. Nothing seemed to work. He put me on methotrexate and I was so sick I felt I would rather have the disease. He also prescribed plaqunil (sp) and after filling the Rx and reading the insert I refused to take it. The insert said you needed to be checked for eye problems before taking and frequently thereafter. It also said the eye problems were irreversible! He never mentioned this to be at all. About that time we moved and I saw a new rheumatologist. This doctor told me I had a severe form of the disease and that I should have synovectomy and wait for a biological drug to be released that would solve all my problems. I quit the methotrexate and subsisted on prednisone and NSAIDs. I also went to the Mayo Clinic and saw a rheumatologist there. He confirmed the diagnosis and said that the surgery would probably be helpful. So, I returned home and found a good orthopedic doctor and had the surgery done on both knees. After the surgery I saw the new rheumatologist again and he said the biological drug had not been released yet and they would call me when it had. I waited and waited and when I would call the doctor’s office to check they acted as if I were bothersome. So I changed to another rheumatologist. This rheumatologist hardly paid attention to me all. If you could walk when you came in his office he told you that you were doing great. He did finally try me on Arava and that seemed to help for a couple of months but my knees were still always somewhat swollen. Finally this doctor closed his office and I was again looking for a new doctor. I was still on prednisone. I chose a rheumatologist 1 1/2 hours from home and was hoping for some new insight into the disease. She seemed not to want to take my case…(I think they like the easy ones) but agreed to try me on Humira. My insurance company approved and I thought “this is it, the newest best thing and now surely I will get better”. However, it never worked on me at all. I just kept getting worse and worse and I felt sick the whole time I was giving myself the injections. Finally I was so bad that I practically crawled into her office. She gave me knee injections and sent me home. I had a small measure of relief for 5 days and then I was even worse. I tried to call her and she would not talk to me on the phone or call me back. I called my mail order Rx service and tried to get her to call me to no avail. They gently suggested I get another doctor. So I went back to my second rheumatologist in my hometown. He could not remember my being his patient before. He insisted on running all the tests again to confirm my diagnosis. He said to stay on the Humira even though it was not doing anything after six months. In the meantime I was having so much pain and suffering and was very very depressed. I find it strange that all the rheumatologists acknowledge that depression is part of the disease but they don’t discuss it with you. They ask on the forms every visit if you are depressed and when you say yes they just ignore it. Anyway this doctor pushed to put me on Remicade. At that time I found a thread on the internet from a girl who had a baby and whose mother had given her Dr. Brown’s book when she developed RA or Lupus. She said she was a lot better and recommended others look into it. I went to the library and got the book and read it twice. I went back to my rheumatologist and told him I had quit the Humira on my own and wanted to try antibiotic protocol. He told me it was crazy and the theory behind it was crazy and it could not work. I told him I had tried all their dangerous drugs for 4 years and I wanted to spend six months on one that I chose. So he relunctantly gave me the Rx. I took 100 mg 2x a day. I started on generic and then saw on the website that Minocin was better so switched to that after some negotiations with my insurance company. Almost immediately my pain level went down and my depression disappeared. After about three months I began to see some small windows of improvement. I quit taking the prednisone (I had been on 3 – 5 ml for a long time). After about 5 months I noticed I was not getting the all day stiffness. Now at six months, as I said in the beginning I am much improved. I check the website often to see what users have to say and it has helped to keep my morale up and given insight into other aspects of the treatment. To all of you thinking about trying this treatment, don’t hesitate. Give it the time it needs. I was lucky and saw results in six months but I would have been willing to wait two years if necessary. READ THE BOOK. I have read it at least six times. When you are not doing so well, just remember that when it is working to rid you of toxins you may feel worse. Sort of like “hunger is my friend” when you are on a diet, “minocin working is my friend”. Hang in there and stay on the road back. Don’t take no for an answer from your doctor. Even my GP now tells me that he has patients on minocin that do very well. Best wished to all of you. I know your pain.

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