Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi All A very happy 2009 to all on this board. I would like to share my RA journey with you all. I have had RA to coming up to 5 years. The first DMARD I took was Minocin which worked to the extent that my ESR went down to 8. A couple of years in, Minocin stopped being available in England and I replaced it with minocycline. The generic did not seem to work and my ESR shot up and my left knee become very swollen. People told me that if I didn't go onto MTX, joint damage would continue and the disease would worsen so I did that 8 months ago and my ESR did go down to 22. A month ago my rheumy put me on sulphasalazine as well as MTX with 3 injections of depo medrone cortisone every two weeks for six weeks. I may yet give Minocin a further try in the future and I wonder if anyone on the board has done a similar thing to me. Ken. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi Ken, from a fellow Brit. I don't know if I can be much help, but I started on generic mino last June, and also experienced swelling of my left knee (and foot). Rheumy didn't diagnose RA until July (ESR was 24 and CRP 73) and said I should start MTX and gave me a DepoMedrone injection (which I only accepted as I was just about to go on an orienteering holiday).(Incidentally it was 80mg which was meant to last 6 weeks +, and did so.) It was lovely whilst the cortisone was working, and all the swelling went down. But I decided not to take the MTX and to give the mino a good chance to work. Also visted the only AP Dr listed in the UK (Dr H) for moral support!! However, I think the body rebounds from the effect of the cortisone, and by October I was back to ESR 35, CRP 71. However, the original swelling has not returned, and I now think it was due to a herx. But I wanted to stick with the AP and since then, on just the mino, inflammation is now gradually declining (December was ESR 29, CRP 39) so I feel very optimistic. Decided to start also on MSM this month, to try to get inflammation down a bit more quickly, as, like you I am being frightened by the rheumy's stories of joint damage, and many people on roadback bulletin board have had good success with it. I really feel this is working too and will know for sure when I get my next blood test this week. I am also taking Arcoxia NSAID but hoping to replace that with the natural COX-2 inhibitor Curcumin as soon as I can get my hands on some. This is the story so far, but I do feel that the generic is working for me. All I will say is that, although it is generic it is a modified (ie timed) release (capsule) type, and I always take it on an empty stomach (2hrs after eating and allow another 1hr before eating again). I also avoid dairy in the meal before I take it, and do not take any mineral supplements - it does tell you to avoid iron and indigestion remedies. I am just wondering whether you experienced a herx when you switched from Minocin to generic, as this can cause inflammation levels to go back up temporarily. I would be very reluctant to get on to the rheumy's drugs spiral, precisely because they just want you to keep taking more & more all together, and goodness knows what it's all doing to your body. My rheumy did say I could carry on taking the mino with the MTX, but I have decided that this does not really make sense as MTX depresses the immune system whilst AP is trying to build it up it to conquer the RA. As Minocin is now available again in the UK, it would be a good opportunity to have another try as it worked for you before. Have you been to see Dr H ? He is just about the only chance we Brits have to actually discuss AP with someone very experienced, face to face, which I find really invaluable. Happy New Year to you, and good luck ! > > Hi All > > A very happy 2009 to all on this board. > > I would like to share my RA journey with you all. I have had RA to > coming up to 5 years. The first DMARD I took was Minocin which worked > to the extent that my ESR went down to 8. A couple of years in, Minocin > stopped being available in England and I replaced it with minocycline. > The generic did not seem to work and my ESR shot up and my left knee > become very swollen. People told me that if I didn't go onto MTX, joint > damage would continue and the disease would worsen so I did that 8 > months ago and my ESR did go down to 22. A month ago my rheumy put me > on sulphasalazine as well as MTX with 3 injections of depo medrone > cortisone every two weeks for six weeks. > > I may yet give Minocin a further try in the future and I wonder if > anyone on the board has done a similar thing to me. > > Ken. > Quote Link to comment Share on other sites More sharing options...
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