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Hi All,
I am a new member. Here is my story in short. I was diagnosed with CREST in 1992. It took doctors a while to diagnose and finally a Rheumatologist put me on Methotrexate and I started feeling better. Went into remission in 2001. No meds after that. Since last two years I have had different symptoms like both of wrists/forearms are shrinking. I had calcification on my buttocks area in the 90s but now they are getting worse. I talked to my Dermatologist about AP therapy. I started a month ago – Doxycycline 50mg MWF to start with , which she wants to increase to everyday. I am also still seeing my Rheumatologist, who is ok with AP therapy but thinks I should go back to Methotrexate since it worked for me before. The thing is none of my tests come out positive. I don’t have pain, swelling etc, just lots of calcification. I take Doxy, that’s all , no other meds. Vitamin C, Fish oil, turmeric fresh, ginger. I have stopped dairy partially since last year. Soy milk, I am vegetarian. My regular blood test are normal but I am really loosing weight. I am 58 years old and weigh 110lbs. I have lost 11 lbs in a year.
Please advice if anyone have had my symptoms and have had success with AP therapy.
Maz , I have read lots of your posts, any advice will be greatly appreciated.
Thank YouHi Krishnam,
Nice to meet you!
Can you fill us in a bit more about your decision to start AP with low dose doxycycline? Was that your dermatologist’s preference? Also, have you had a chance yet to read The New Arthritis Breakthrough by Henry Scammell (it includes Dr. Brown’s original book, The Road Back)?
The reason I’m asking about your chosen protocol is because if you take a look at the Scleroderma Research section of this site, you’ll find a number of studies for CREST and calcinosis showing efficacy for the use of minocycline. All tetracyclines have important immune-modulating effects for the various forms of scleroderma, not least of which are it’s chelative properties, which seem to help diminish and resolve calcinosis. Minocycline was developed for teen acne and is said to be several times more lipophilic than doxycycline, able to penetrate the blood-brain barrier and skin dermal fibroblasts in a superior manner. It’s downside is that it can cause vestibular symptoms, like dizziness or nausea, early on, which mostly resolve as the body adjusts, and also some people experience benign cosmetic blue-gray hyperpigmentation. To help reduce these effects, some docs will combine doxy with mino so that the patient is at least getting some of the benefits of mino. Minocycline’s absorption isn’t as affected by food as much as other tetras. So one has the benefit of being able to eat a light meal (avoiding calcium or Iron-rich goods) with it, to help settle any early nausea.
AP is a very slooooe therapy. With long-standing disease, patient experience seems to be that the first year is really about slowing down the freight train, after which incremental improvements are seen. Sometimes progress is dose-dependent, too, but everyone’s journey tends to be unique, depending on the individual variables (age, gender, hormones, disease duration/severity, stress, diet, comorbidities, etc).
It can also be supportive to read the patient remission Stories on site and also in the second Scammell book: Scleroderma: The Proven Therapy That Can Save Your Life
Are you taking a good quality probiotic to protect your gut, spaced with a good window of 2-3 hrs after antibiotic doses?
Maybe it’s not so essential but do you take vitamin K2?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous
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