dosing with minocycline

[Diane]

My Reumatologist is willing to try the AP with me. He told me “It doesn't work…it does have side effects”,,”But if you want to do that we can”. I asked him to prescribe minocyline for me before I would choose to recieve the IV cytoxin that he recommends. I am concerned that I should know more before I just start the minocycline. I understand 100mg twice a day is good. Should it be seven days a week? Is AP IV treatment suppose to be better? What side effects would the oral form have? Is there a problem with yeast infection when you take the oral? He does not believe it will help me, but is willing to pacify me. I do not have lung or heart involvment at this time. My fingers are curling and I get very tired easily. The skin on my face legs trunk arms are tightening. I see him nwext week and want to know what I should be able to ask him or know before I go. Any help or info would be greatly appreciated.

[Cheryl F]

Diane:

I will give you my opinion and try to answer some of your questions, but first, HAVE YOU READ THE BOOK??? Scleroderma, The Proven Therapy That Can Save You Life. but Henry Scammell  This book will answer many of your questions, but not all.  I'll give it a shot.

Your Rheumy says, “It doesn't work…it does have side effects  — He is clearly misinformed.  This treatment has helped countless Scleroderma patients recover and it has been used for 50+ years with few side effects (not none but few, tell me what drug doesn't have side effects)

I am concerned that I should know more before I just start the minocycline.  — You should know as much as you can as you start this treatment.  I am not saying wait to start, but learn as you start.  Asking questions on this Bulletin Board is a great start.  There are many people who participate here that have recovered or are in the process of recovering from Scleroderma with AP treatment.  Read “the book” and the testimonials on the RBF website. 

I understand 100mg twice a day is good. Should it be seven days a week? — The daily dosing and the three times a week are both common.  People have gotten better on both doses.  Some people have an issue tolerating the higher dose, if that happens you may have to work with your doctor to lower the dose.  When I say “trouble tolerating” I mean, stomach upset and dizzyness.  This is said to go away “once your system gets used to the drug.” 

Is AP IV treatment suppose to be better? — The treatment used by Dr. Brown included starting the protocol with IV Clindy, many doctors still use this and feel that it gives the AP therapy an extra “punch.”  However, many scleroderma patients have improved completely on oral Minocin alone.  I think the decision should be based on several things, how advanced is your disease, is IV AP available to you (not if your rheumy doesn't “believe in” AP), and how far are you willing to go to get the IV treatment?  Those are all issues that would come into play to make that decision. 

What side effects would the oral form have? I would recommend that you read the manufactures website or speak to your pharmacist to learn about the potential side effects.  Just keep in mind that millions of teenagers are on this same drug, usually at the same dose for acne.  I don't think it is too big of an assumption that if it is safe enough for kids with pimples, it is safe enough to combat Scleroderma, just my opinion.

Is there a problem with yeast infection when you take the oral? Yes, definitely, you need to have plenty (meaning more than the dose on the bottle) of high quality probiotics.  Ask on this board for recommendations.  My daughter has used several brands, now uses Metagenics Brand probiotics.

Regarding what to ask this Rheumy, if he doesn't believe in AP, and has no experience with him, I think you should ask him to consult with an experienced AP doctor who has watched many people recover from agressive cases of scleroderma, BUT, I think that might make him mad, I would just ask for the RX and say THANK YOU!

Good luck with your decision!

Cheryl Ferguson

[Diane]

 Cheryl,

Thank you for the input. I am just about finished with the book(today). I am just wanting to know if I am missing anything before I go in to see my rheumy. The book was very helpful. I felt like it was the only time someone put into words the symptoms I have experienced. I'm not alone obviously! Thank and your daughter for getting me started on my path of hope. I will keep you updated. I am glad to get the info on taking a probiotic. At least i know he should discuss that option with me.

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