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Hello,
My wife Margie (49 years old) is considering starting on rapamycin (Sirolimus) for diffuse scleroderma (17 years since diagnosis). The condition started as CREST and skin only but now Margie has developed lung involvement.
Any information on dosing regimens, comparison to mycophenolate and or with A/B Protocol would be helpful.
Thank-you,
JonathanJonathon:
Welcome to the Road Back discussion forum. I am not sure that many of the participants on this forum will have personal experience with either of the drugs you are asking about. Although I do remember a couple patients over the years who were on Cellcept when they started antibiotic protocol to treat scleroderma.
I am not sure from your post whether your wife is already on antibiotic protocol to treat her scleroderma, has she been on AP for all these years and she is having disease progression that is causing her doctors to want to add the immune suppression drugs?
If she has not yet started AP and you are just considering this protocol, we are happy to answer any questions you may have that can help you and Margie make your treatment decision.
13 years ago my daughter was diagnosed with limited systemic scleroderma, including rapidly progressing lung involvement. She never took any of the immune suppressants medications. She only did the antibiotic protocol. She recovered fully.
Please let us know if you have any questions.
Best~
Cheryl
jkiesman
unfamiliar with those antibiotics.
I have used in rotation for my scleroderma minocycline, azithromycin, monolaurin, oil of oregano, clindamycin and fluconozole. I have had a good number of months with no scleroderma symptoms (currently flaring again though).
are those the only antibiotics you have access to?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, biocidinHi, I’m on Mycophenolate and had early lung involvement. From what I’ve read, Mycophenolate is suppose to be excellent for lung involvement and my lungs haven’t gotten any worse. I’m using it with AP and haven’t had any problems with side effects. I’ve read it matters which version you use- Mycophenolate or Cellcept. People debate the merits of each on other message boards.
Long term, I do not want to be on Mycophenolate or any other immune suppressant. I’ve tried my best to research it and I’m just unsure of how long its appropriate or how long it will work. My symptoms came on fast and I started with the Mycophenolate to ‘buy some time’ until the Minocycline (AP) kicks in. I really didn’t feel I had time to wait. Things were progressing very fast! Even with both drugs, I didn’t see things slow down and start to improve for 3 months.
Minocycline and other antibiotics can be considered anti-inflammatory and can help in the capacity for calming down the immune system. Even for people that have doubts on AP treatment, its a valid approach because of that alone. I think its much safer long term than many of the other drugs offered.
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
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