Is anyone following the antibiotic protocol for systemic sclerosis/scleroderma?

[arisaig22]

Treatments

[Redwine53]

hello I haven’t heard about this though I was told by by rheumatologist nurse to stop mycophenolate when I take any antibiotics. My gps hadn’t heard of this so I am busy educating any gp I see. Also told to stop mycophenolate for a week when I have a Covid jab. It think it makes sense to stop the mycophenolate and I have been fine restarting it, I am on 2g a day (4 pills).

On

[arisaig22 in reply to Redwine53]

Hello. Thanks for your helpful response. I'm fairly new to treatment and only prescribed hydroxychloroquine at present. Wishing you good health.

[Redwine53 in reply to arisaig22]

I am on hydroxychloquine too but continue it when taking antibiotics ( on my third lot now). I was diagnosed three years ago with systemic scelerderma lupus and myositis. Good health to you too.

[arisaig22 in reply to Redwine53]

Can I ask, do you feel better overall when you're on the course of antibiotics? The 'antibiotic protocol' I mentioned , sometimes called the 'Harvard protocol'- which many people say has placed them in remission- involves a specific regimen of minocycline,for life. It is 'off label' and very few rheumatologists will prescribe it due to lack of research evidence. I hope this explains the reason for my question. Thanks.

[Redwine53]

no I didn’t go into remission at all, taken antibiotics three times - chest infection, after having my gallbladder out ( took 8 weeks to get over the op) and now, my first ever uti, at 69, which is improving.

Interesting research you have been doing, I haven’t heard of that drug, in fact the rheumatologist wasn’t involved with prescribing any of my antibiotics.

[arisaig22 in reply to Redwine53]

Thanks for your reply. I'm just looking at information from others' well documented experiences on the 'Inspire' website, 'The Road Back Foundation' website (off label antibiotic protocol)and also a chap named Ed Harris who used a treatment called TPE which put him in remission. He is now working alongside research scientists at a US university, although he isn't a doctor! His website is sclerodermainfo.org/

Good health.