Home Forums Personal History and Progress Threads stressed and confused!

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    My so called RA started in 2001 with a sudden onset of extremely painful and swollen wrists, this lasted on and off for several months, tried all sorts of NSAIDS with modest results.  Went to rheumy who diagnosed it as Palindromic rheumatism prescribed Plaquenil.  This started working within 2 weeks with dramatic results.  All was well for several years, other than swelling in the soft tissue of L shoulder.  Drained and injected with cortisone, no recurrence.  Was given generic instead of brand name plaquenil, which made my feet stiff and painful.  Changed back to brand name, L foot got better, R foot continued to hurt, swollen and hot.  Xray/MRI revealed erosions in all the joints in the midfoot.  Different rheumy put me on MTX, then Arava, then Enbrel, then Enbrel +MTX. Each of these regimens for about 6 months, nothing worked, and the erosions and damage progressed.  Someone told me about mercury in amalgams causing auto immune disease, so I had them removed, no improvement.  Initially my lab results were abnormal, Sed rate was high, rheumatoid factor positive but not very high, Anti CCP negative.  At the moment, my sed rate is back to normal. At this point I stumbled across the roadback.  July 2008 started on a course of IV clinda 900mg bid for 5 days, and mino 100 mg MWF.  When I attempted to increase the mino to 100 mg BID, my foot suddenly became much more swollen and painful than ever, I'm assuming this is the herx.  I cut back to 100 mg MWF, and have not attempted to increase it again ( now is about 4 weeks later).  I recently went on a trip to Europe, and I needed to walk so I was given a 2 week course of prednisone (started high dose, weaned down to nothing).  This worked very well, swelling and pain down, but now that I'm off it, the swelling and pain has returned.  I've been following the thread about MSM, so I started on it as well, as it makes sense to settle the inflamation to allow the antibiotic to work.  I will be having bunion surgery in 2 weeks' time on my “good” foot.  Needless to say, I'm a bit apprehensive the post op recovery with two incapacitated feet!  I'm frustrated, depressed and scared, as I suspect many RBers are at the beginning of their journey, when they feel they're doing everything right, but nothing seems to be working.  I'm afraid the damage is progressing, and since it may take considerable time for the antibiotics to kick in, more damage will occur, which I suspect is irreversible, and I may need to have  my joints fused, not something I want to do if I can avoid it.  I want to increase the dose of Mino, but think I should wait for the herx to pass and also for the MSM to settle the inflamation.  I know I've had mycoplasma many years ago, as I recall having positive mycoplasma antibodies after a bout of “walking pneumonia”, so I assume that I'm on the right antibiotic, without having done any recent lab work.  I know there is a wealth of knowledge and experience in the RB community, so I'm hoping some of you can give me advice as to what my next steps should be:  sit tight and wait, change the dosage, etc, etc.  I know I can always count on this forum for loads of encouragement, so thank you all very much in advance!   Silvia 

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