Patsy Rose's blog

Update on progress

I have officially been on AP for 3 months now. Most of the time I have taken 200mg doxyi daily, 'though after reading that pulsing was better for killing bacteria than daily dosing, I tried MWF for a couple of weeks. I think I do better on daily, and that is what is ususally recommended for SD anyway. In my last post I mentioned wrist and hand pain, which was terrible!

Update on Treatment

Well, I have been on AP (doxyi) for almost a month. Have definitely been herxing, mostly in my hands, which makes sense, since that is where my disease has been the longest (Raynaud's for 25 yrs). Strange, because my hands have never been really painful, just extremely sensitive to the cold. Now I feel like I have RA in them, they start hurting during the night, waking me up, and are so bad in the mornings that I can't lift, twist or turn anything. But I think they have been better the last 3 days, so maybe I am over the hump.

Update on new rheumy

Well, I saw the new rheumy in St. Louis yesterday, and, long story short, he was willing to prescribe an antibiotic (doxyi). According to what I have read, Minocin is more recommended for scleroderma, but I was so shocked that he was agreeable to the idea, that I didn't challenge the doxy. Maybe he has had better luck with it, I will ask him next time I go. Anyway, he seemed pretty thorough, ordered lots of lab tests, most of which I have never had before (Lyme, Parvo and others - 7 tubes of blood in all), so it seems as if he is not taking anything, including my previous diagnosis, for granted.  He also said several times, that "the antibioticsi can't do any harm".  I have started the doxy - 100mg twice a day, am also taking a probiotic & undenatured whey protei

Latest Labs

Just got a copy of my lab results from my visit to the Springfield rheumy, who is not in favor of antibioticsi. In eight months, my Sed rate has gone from 65 to 99, and my CRP from 2.1 to 3.6. This just confirms my suspicion that something is going on, that I am in an accelerated phase of the disease. In addition to the changes on my chest CT, which they seem to think represent early fibrosis, I have been having a lot of pain in my hands & wrists, and occasionally other joints such as shoulder, hip, ankle, etc., which is all new. I have an appt with a new rheumy next week in St. Louis, hoping he will not only agree to antibiotics, but will be supportive and knowledgeable. One can only hope! (and pray!).

Search for Scleroderma Treatment

I am trying to find a doctor (rheumatologist or other) in the St. Louis area. I have had scleroderma, diagnosed about 10 years ago, with Raynaud's dating back about 25 years. The scleroderma had been fairly stable until this spring, when I began to show signs of early lung involvement. The only drug that seems to "help" lung involvement is Cytoxan, which is also an anti-cancer drug. I really don't want to go this route, and nothing else has been offered. My current rheumatologist is in Springfield, Illinois. When I asked him about antibiotic treatment, which I just recently learned about, he was not at all in favor of it. I think he is one of those who are, as someone else so eloquently put it, "content to monitor the inevitable downward spiral". Any recommendations?
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