Home Forums Personal History and Progress Threads Scleroderma: The first 20 months (a history)

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    a50505
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    20 months seems like a good time for an update, so here is my story thus far.
    I don’t have scleroderma.
    But my wife does.
    Since she got the difficult part to play, I stepped into the role of researcher & advocate.

    I want to start by giving a big Thank You to the awesome members & volunteers here at RoadBack.org. Thank you for doing what you do. We found out about AP and lots of other good advice here. I’m so glad we started pursuing that sooner rather than later.

    The short version of the first 18 months goes like this:

    Spring of 2010: this is when we learned how to spell “scleroderma”; my wife’s doctor had referred her to an endocrinologist for some tests to try and untangle hypothyroidism. It turned out that an ANA test came back positive for scleroderma.
    At first we were saying, “Sclero-what?” I remember going to a Scleroderma Support Group that summer. It was a chilling moment for me when I realized why none of the speakers were talking about treatments; they do lots of research and lots monitoring, but actually have no treatments to offer. (fwiw, I haven’t thought of a reason to go back to that support group.)

    Soon after that, I found this site, RoadBack.org.

    Now it is January 2012.
    I hate to think of how long this could have gone undetected racking up damage.
    We were really quite lucky that ANA test flagged it when it did.

    My wife has great energy compared to 2 years ago. She is doing yoga 3 times a week (no way she could have done that in 2010!) and she is enjoying life; the good days outnumber the rough days. We are grateful for the time we have together, and… while nobody ever really knows how long that time will be, I do know that our time lately has been much better because of everyone’s help here.
    I don’t feel it is overstating things to say AP & RoadBack.org gave my wife her life back.
    ….. Sincerely, John

    The rest of the story…..

    Spring 2010: initial diagnosis + shock. Her rheumatologist prescribed prednisone (anti inflammation), cozar (reynauds), prevacid (anti gerd) – useful to stabilize things, and offered helpful advice (like elevate the bed).

    Fall of 2010: We started getting help from Dr S, began minocycline & made our first trip to Ida Grove; that helped a lot.
    Note: her rheumie agreed to prescribe minocyline, saying “wont’ hurt, might help.” (In hind sight I now realize how lucky we were to to have an open minded rheumie, I didn’t appreciate that at the time.)

    Fall 2010: First started doing hot epsom salt baths (2 cups, about 1 every week or two). Helped aches a lot.

    Winter 2010:Started tapering off prednisone. And we cut over to coconut oil for cooking (I threw out all our old cooking oils). Great stuff, and a good moisturizer, hard to say too much good stuff about coconut oil.

    Jan 2011: My wife just finished tapering off prednisone. This took about 3 months; we went pretty slow, especially near the end (0.5mg steps the last few weeks). This was really pretty rough on her at the end.
    Spring 2011: Another Ida Grove trip; helped a lot (Dr S. rocks!)
    About this time we started going for walks (just 2 or 3 miles, a few times a week. Nice & low key- not a triathlon or anything, but this was a pretty cool – covering 6 blocks used to be a challenge for her).
    Summer 2011: We found a doctor in Chicago that would work with us on Antibiotic Protocol. This means an IV every 2 or 3 weeks instead of 2x year. This doctor also checked for (and found!) some other stuff, like h.pylori and interesting tests that nobody had asked about (we like this doctor 🙂 Very informative.).
    Summer 2011: For gerd, we stopped prevacid (PPI antacid) after reading that “heartburn” can be caused by Low (!?!?) stomach acid. Started licorice extract + HCL w/meals to kick up stomach acid.
    Fall 2011: followup with rheumie; one breath test (lung volume) metrics actually improved since the first panel in 2010. Rheumie told her, “You are my healthiest patient!” (which is nice; though it does make me wonder why the hospital policy is no intravenous AP… and not proactive with minocycline… *shrug*).
    Fall 2011: mercury fillings; we started replacing these. Her doctor thought getting them out might be helpful in treating her hypothyroid condition. Now no more metal filling; 100% composites (the “silver” lining here was some of the fillings were past their service life and were showing new decay on their interior, so it was good to be ahead of that curve). While I don’t know if this affected Sclero at all, *shrug* I’m pretty sure that mercury doesn’t help matters any.

    r.e. reynauds: symptoms greatly improved. In the winters of 2009/2010 & 2010/2011, toes + fingers were pretty much always cold and always achy. Air conditioning could be difficult in the summer. Now in the winter of 2011/2012, her overall comfort is much better (still achy if she forgets gloves on a cold day, but fine with good gloves: for context, we are in Chicago, so it can get sort of cold some days).

    r.e. gerd: HCL hasn’t made a big difference, so no more HCL (for now – though I do think it helped a lot during transition time). Anyway, I am very happy with the no-more-Prevacid part. We still keep the bed’s head elevated… but no serious reflux issues after stopping Prevacid last summer (there was one pretty bad incident at the time; mega reflux after some way too rich deserts (we were visiting relatives; now we know better)). I think the HCL helped – somewhat. I’m not pushing it at this point – she has enough other stuff to deal with. Maybe later this will turn out to be the next “low hanging fruit” we focus on.

    So… this brings the story back to where this post started.
    It is 2012 now. Things are turning out well. I feel we’re really very fortunate.
    I mentioned she is doing yoga 3 times a week. She really enjoys it, which is huge (she started working up to this in Summer 2011).

    She is on a 3-week interval with IV clindamycin, and still doing daily minocyline.
    Note that once, during Thanksgiving, we let that get pushed to 5 weeks w/scheduling + family visits; and it became really noticeable (achy + fatigue). 3 weeks seems to be the sweet spot for now.

    General closing thoughts:
    We adopted two cats; I don’t know if that helps or not, but they’re fun to have around :-).

    Diet seems to make a difference. I haven’t closely charted this, but when we stay away from flours & gluten she seems to feel better.

    The next big steps I have planed are:
    1) running through a mercury detox program.
    (it turns out that is kind of complicated; I’m reading up on amalgam illnesses before we go down this road.)

    2) lowering both of our blood sugar levels. I’ve read about many benefits to that; the key one for Scleroderma seems to be the collateral damage caused by inflammation. This is tough, because we both love pasta, pizza, ice cream, chips… Pretty much anything high glycemic. *sigh*

    After that, I’m sure other opportunities to be healthier will present themselves.
    For now, it sure is nice to get back to “just living” again.

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