Starting AP today and would love your feedback!

[Lakes]

Good afternoon everyone! I am brand new here and have learned so much already – I'm so glad I  found this website before my appt. with my rheumatologist today.

My blood work came back positive for scleroderma, and based on my symptoms my rheumatologist said I have systemic diffused scleroderma (no skin involvement yet). My symptoms have been going on for awhile, some for years, but seem to be increasing in intensity lately. They include: joint pain, numbness and stiffness, carpal tunnel, bone loss, fatigue and lack of energy, chronic night-time cough (not every night but flares up frequently), frequent headaches and migraines, dry mouth, and as of today for the first time, high blood pressure. My rheumatologist said she has had a few patients with systemic scleroderma but most of them had serious skin involvement (I have none), and their outcome was not good. She said she puts virtually everyone on plaquenil, and some patients on ACE inhibitors. She has used AP for arthritis with a 50% success rate, she had only used it once for scleroderma with a gravely ill patient as a last resort (I don't think there was a happy ending). I had printed most of the roadback.org site and gave it to her. She was very happy to get the information and reviewed the entire file right then. I told her I wanted antibiotic therapy, and after reading the antibiotic protocol section she said “I see that systemic scleroderma is treated with 100 mg minocycline, why don't we start you with 50 mg per day, 100 mg per day the next week, and 200 mg per day by the third week.”  I was thrilled with her willingness to use AP, but concerned that she determined the type of antibiotic and dosage from a quick read of a website page.  My questions are: does that sound like a reasonable approach to AP in my situation? I know that minocycline is commonly used, but what other parameters should be used to decide which antibiotic or combination of antibiotics to use at what dosage?  She also requested I get a chest xray, gave me a prescription for celebrex, and scheduled a one month follow-up. She already had me on ultram for the pain – that works “okay”, so we are going to continue that.  She didn't prescribe the plaquenil or ACE inhibitors at this time, but scheduled a follow-up in one month. She did tell me to purchase a blood pressure cuff and call her if my bp exceeded 150 over 100.  Is this similar protocol to what other systemic scleroderma patients have started with? Are plaquenil and ACE inhibitors usually prescribed also, with my symptoms?  I'd really appreciate your feedback! I would also like to thank those of you that have already contacted me, your support and wealth of information has been incredible and given me such a positive outlook! Thanks! Liza

[richie]

Hi

An ACE inhibitor is very important as it acts to help with preventing renal problems in scleroderma —kidney problems are a main cause of mortality in scleroderma –It has been well demonstrated and documented that minocycline is the antibiotic of choice in treating scleroderma –Seems your doctors approach is prudent and conservative -The treatment of sd using antibiotic has been very successful at the level of 200 mg daily

richie-

[Kim]

Hi Liza and welcome to the Roadback forum.

Richie and I are both AP success stories for our Scleroderma and there are many others.  AP works extremely well for SD, especially when it's caught early.  It does sound like you are dealing with an open-minded doctor, so good on you, sure makes life easier when you don't have to beg for Minocin. :doh:

There are many kinds of fibrosis with SD and not all are textbook.  Mine was more deep-muscle fibrosis with large areas of thick, lumpy areas, but the skin looked normal.  My face was tightening and I had sausage fingers, but other than that one wouldn't have seen my outward signs of SD.  I had carpal-tunnel, Raynaud's, and crushing fatigue, but still didn't look sick.

Everyone has to figure out what dosage will be the best fit for them.  Whatever you and your doctor decide, I would suggest you start on a lower dose and work up until you see how you'll react.  Remember to take a good probiotic (more than what's on the label) to keep from getting yeast infections.

There are three things that helped me the most.

1. Neprinol) to dissolve fibrosis and thin the blood for better circulation which aids in healing

3. Frequent use of an infrared sauna for circulation and detox

Thanks to this protocol I am well today and “back in the game”.

Wishing you the best………kim

 

[mkbeeliever]

Dear Lakes,

I would most definitely keep an eye on that blood pressure!  Not to put fear into you, but my mom is now on dialysis because we did not know she had scleroderma and she dealt with very high blood pressure for a very long time.  (all the while being treated by a cardiologist who kept trying to tweak her meds. but to no avail.)  Shoot, if it were me and I had even remotely high BP and scleroderma, I'd be on the ACE inhibitors PDQ.  Again, not trying to scare you!

Blessings to a fellow Georgia Peach!
Michelle

P.S. Glad you found a rheumy to use AP.  My mom's rheumy would not even test her for scleroderma. Looked her right in the eye and said “you don't have scleroderma!  You have inflammatory arthritis!”  And would not even do a blood test.  Her new PCP and my personal friend read the Scleroderma book per my request and said “let's do it!”  We are noticing subtle change.  BUT, my mom is very sick so it will take a long while.  You are on the right path!

[Lakes]

Thanks Richie, Kim and Michelle, for the great information! I think I will call my rheumatologist this week to request the ACE inhibitor, better safe than sorry! Especially since I've heard that high bp tends to be a precursor for heart/lung involvement – why wait for that? Bp is still high tonight, so I'd better get on it, I want to hit this thing with every weapon available. Has anyone used plaquinel, and do you recommend it? Thanks, Liza

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