Home › Forums › General Discussion › Need help.. relapsing after actemra
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March 25, 2019 at 12:29 am #463971diddyParticipant
Hello,
I was on AP befor getting pregnant (clindamycin 600mg IM once/wk and vibramycin 100mg 3 times /wk) and 10mg solupred/day… I was in remission and every thing was great till I found out I was pregnant so I stoped AP for about 2 years and 3 months .. It was a stressful time for me.. I had to elevat solupred dose to 20mg/day ..and took diprofos IM almost every month … 5 months ago I tried actemra with my rheumatologist and had 2 doses .. I experienced a very bad body aches the next day after actemra intake ..moreover serious upper respiratory infections that lasted for months .. I was on AP too ..It somehow saved me from getting worse complications from the infections. . I stoped actemra and now only on AP (clindamycin 600mg IM once/wk and doxycyclin (generic) 100mg 3 times /wk) and managed to reduce solupred dose from 20mg to 15 mg in about 2 months duration.. I’m happy with this result but I feel like I no longer respond to the doxycyclin generic .. The reason I shifted from vibramycin to the generic is also because I stoped responding tp vibramycin .. Unfortunately in my country minocyclin is not available. .I ‘m now with moderate to mild peristant activity and I developed ulner deviation deformity in both hands ..I don’t know its current degree but I know I ‘m on the way to lose the function in my hands as the activity now is persistant and somehow confined to hands and feet , unlike in the beginning of the disease it was more in large joints as hips and knees . .. so I need advice on how I should modify my ttt plan to stop the activity in my hands ..what are the antibiotic options otherthan vibramycin that can be effective in my case?? . and any other measures as special splenting or exercise or other options to fix and prevent more deformity??Diddy
May 13, 2019 at 8:47 pm #464297PinkmothKeymasterwhen I had a lot of joint pain, azithromycin and oil of oregano combo seemed to really reduce that over time. but I see you’re already on clindamycin. is there no way you can order minocycline from an overseas pharmacy?
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinMay 14, 2019 at 6:30 pm #464302PhilCParticipantHi Diddy,
Most likely, doxycycline stopped working for you because you have been taking a low dose for a long time. That, and the fact that you stopped taking it for more than two years. In my case, doxycycline lost much of its effectiveness after only 18 months. I now believe that the idea that 100 mg M/W/F is the “best” or “correct” dose is a misconception. It’s a good starting dose, but that is all.
Is lymecycline (Tetralysal) available in your country? If so, it may be worth trying. If not, consider increasing your dose of doxycycline. In addition, replacing clindamycin with a macrolide antibiotic (e.g., clarithromycin, roxithromycin, azithromycin, erythromycin) may be helpful. Of the ones listed, I would probably choose clarithromycin or roxithromycin.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
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