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Well, unbeknown to me, my journey start about 9 1/2 years ago when I was 35. After years of fevers, pain, fatigue, migraines and tests and years of telling my doctor that something was wrong with me he finally sent me to a rheumatologist in October of 2008 who told me I had seronegative arthritis and said it was a precursor to full blown RA.
I knew nothing about RA much less seronegative arthritis so I got on the internet and did some research. What I found was not very hopeful, having not only to deal with the disease itself but all of the horrible side effects of the drugs they want you to take. At the time I saw the Rheumy I was taking about 2400-3000 mg of Ibuprofen for pain. He changed me to a different anti inflammatory and put me on sulfasalazene. In March I had to go off the sulfasalazene because it was causing severe diarhia. Because my liver enzymes were way up my dr. didn't want to put me on Methotrexate and wanted to put me on Enbrel. I told him that I wanted to check into the side effects of Enbrel before I started on it. I decided I didn't want to take any of the DMARDS quite yet and felt like I was being backed into a corner with no options about how to manage this disease I had.
In February of 2009 I found and read “The New Arthritis Breakthrough”. I began to think there was some hope. I was so excited about trying the AP. My Rheumy wasn't. I couldn't find a dr. who would proscribe the Mino until June 2009.
I began my AP on July 1, 2009. 100 mg MWF. It has been 2 months now and I feel worse than I ever have and have had a significant increase in pain. I believe this is a good thing; that the AP is doing what it is supposed to. I understand that everyone is different, but I hope I see some improvement soon. I wonder if anyone has kept track of any statistics on the lenght of time before improvement is seen. Does anyone know of the failure rate of patients on AP?
Well, that is my story. I hope to have good news soon. My best to all who have just started their AP.
Stile – your post has been moved from Personal History and Progress section to General Discussion as you asked a question in it. In the Personal History section of the Board you will not be able to receive responses as it's for author's journal notes only.
If you would like to have this post as the beginning of your own Personal History and Progress thread, please copy it across. RBFV
Minocycline is slow-acting. My AP-knowledgable rheumy told me that most people respond at about the 6 month point, though it can take as long as a year.
I've been on it three years now and am doing great! It kicked in for me much sooner than 6 months. Hang in there!
Sierra
Stile- You sound a lot like me—pain, fevers fatigue and migraines. I was diagnosed with RA but my RF factor has been negative also. It took me a good year and a half on mino to feel better. If you are feeling worse now than ever, it may have something to do with herxing on the mino. I remember those days very well and am experiencing them again now. One way to maybe figure out whether you are herxing (this is what I did) was to stop mino for a couple days to see if you symptoms improve somewhat. Also, I kept a daily journal where I wrote every symptom and everything I took just so I had some way of knowing what was a worsening of the disease and what was a herx. A journal helps make sense out of the seemingly crazy symptoms.
I developed a sensitivity to mino and had to reduce my dose. Some people find that reducing their mino dose then slowly ramping it up again, helps control the herxing. This board is the best place to get the support and advice you will need to helping with the AP protocol. Good luck!
Stile,
You may need antiboitic in I.V.'s for a week . I began with 1 week of I.V.”s, then started with the oral minocycline 100 mg. twice a day. I got better then worse, now I am much better. I have been on AP for over two months. Each person is different and the way our bodies respond can be very different. JUST DON'T GIVE UP. You may need to find a more experienced AP doctor. I drove over 700 miles to see a doctor in Iowa. I know that , not everyone can do this , but I'm just telling you , what is has been like for me. I believe you will get better, just have patiences. You can remind me to have patiences the next time I get discouraged. O.K. :blush: I wanted a quick fix, but it just doesn't work that way. Hang in there, and keep posting here, there are so many good people here to help you. I could not have made it without this board, and all the experienced people her. Good luck to you .
Love,
Judy
Stile,
Oh, by the way, when I say I got better, then worse, then better……….Well the (worse) was by far worse than I was before I started AP, so I think like you said it is a good sign, that thisgs are working. I just held strong and had faith that I was going to get better, and that the end is what I was working for……… Hope this might help you in some way……
Judy
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