Immunosuppresants and AP

[qman]

I am asking a questions for a woman in Greece who is starting AP on her own. I am helping her as I have 20 years experience with AP but I never took immune suppressing meds with mine. Can you stay on these meds while she starts AP? What are the possible interactions and what should she be looking for? Is there anyway she can access this board in Greece? My story is systemic sclero diagnosed 1998 Mayo Clinic. Fourteen years on mino then switched to azithromycin after it was found I had bartonella and after 4 years of azithromycin my sclero is almost gone and I have reversed all other problems including mild pulmonary hypertension, GERD, sjogrens, Hasimotos,and seasonal allergies are almost gone! I haven’t been on AP for a year and a half and no problems even after 20 years on antibiotics. I need to update my story on here. Will soon. just need to help this woman!

[Lynne G.SD]

Like you I have been on AP for just under 20 years and was perfectly normal after 4 years.The first 2 I was on methotrexate and slowly weaned down during the next 18 months with no problem.If I stop mino or doxy for a few weeks back comes the SD.Now I only need 1 doxy every couple days or so to keep my remission.

[Luck20]

I’m taking mino with Cellcept/Mycophenolate and getting better every day. Its been almost a year of both. Long term, I want to switch to only mino only. I had severe onset and started on ap quickly after being diagnosed. I think the disease started originally 15 months prior. I believe starting early helped me.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[qman]

Thanks for the responses. I will let her know its ok but if she can wean off the immune suppressants she would probably be better off.

[Lynne G.SD]

The one important thing she will have to do is to have a kidney test every couple of months to monitor for kidney failure which is a big problem with SD

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