Systemic Sclerosis and mino mwf

[richie]

Hi I am interested in hearing more about three people having scleroderma –Are they all in the same town—????? When do you take your first dose ??? when I first started I took the med first thing and had real nausea issues —I now eat breakfast wait two hours and then take the first dose
richie

[richie]

Hi I have been taking minocin the brands sine 1999 –no side effects at all –just be certain to take good size doses of probioptic daily —
richie

[sunny22]

Richie,
We are in different states and all started ap at different times last year( see first post). Yes probiotics are a necessity for sure. Have you beenl taking mino 100mg 2x/day since 99? Are you treating SD?

[richie]

Hi Yes I have been taking 200 mg daily for all that time –I am doing just great –complete remission for a real bad case –I continue taking the full dose because there are many instances of relapse after going off the med –since I have no ill effects -it seemed an easy decision for me to continue –I do have kidney and liver function tested every year or two –I might add there are other supporting meds in my arsenal –calcium channel blocker for Raynauds –procardia for blood pressure –reflux med –etc —
richie

[sunny22]

I love to hear those success stories! What kind of Illnesses were you dealing with? I’m sure i will stay on it after a remission out of pure fear! So glad you are doing well. And wise to f/u each year on all your systems. Good health to you Richie! Sunny

[richie]

Systemic sclerosis

[Cheryl F]

Sunny:

Glad you are here, with the support of the great folks on this forum I am certain you will overcome the hurdles and be on your way to better health.

I have heard of several patients who were quite light (less than 110 lbs) and their docs (one of whom was the famed Dr. T of Harvard, Richie’s original doctor) started them on 50 mg pills. I have heard of a couple others who had difficulty tolerating the mino and did the 50 mg MWF, slowly over a a few months building to the full 100 mg 2x day dose. I think the point is to take as full of dose as you can handle. Work with your doctor to find what works for you.

My daughter started minocin in July 2007 for systemic scleroderma. Her fingers were so swollen and contracted that she could not type, use silverware normally, button clothes easily, etc. She also had lung involvement. She is doing well and living an extremely active and physically demanding life (think working 90+ hours per week).

Keep doing what your doing, figuring out what works for you, and you’ll make your way back to health as well.

Cheryl

[sunny22]

Hi cheryl,
I want to thank you once more for the encouragement and support you gave me a year ago when i got this dx! I am happy to say that i am now taking the full dose because of this group. I didnt realize i could have food with the mino. Although still nauseous, i feel ill get to my goal sooner sticking with the full dose.

I am happy to hear your daughter is in full recovery. She is remarkable persuing her higher education. I hope you and your husband are doing as well. Since we spoke last i found out that my daughter, 21, has the same dreaded disease. In the mean time she is on mino 100mg 1/day until i can get her to IA.

Thanks for your post and the encouragement once again.
Sincerely,
Sunny

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