Home Forums Personal History and Progress Threads Reclaiming life after SD diagnosis

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  • #301321
    SusanSD
    Participant

    Diffuse Scleroderma Story ? 2 years of AP
     
    I first noticed the swelling in my hands and feet shortly after my daughter was born in 2005, and thought that it was post-pregnancy fluid. The swelling was significant because I could not wear my shoes or watch. Finally after two months when the edema wasn?t getting better, I decided to stop breastfeeding, hoping that would be the answer. But the edema was not improving, so I went to a family physician. He referred me to a rheumatologist and also wanted me to get chest x-rays. It turned out that I had walking pneumonia.
     
    The rheumatologist?s nurse practitioner didn?t know what I had and kept prescribing different medicines like Naproxen and Mobic. The only medicine that seemed to help was prednisone because when I tried to stop taking it, the swelling came right back. By May 2006, after normal x-rays and many blood tests, the nurse practitioner was almost ready to diagnose me with sero-negative rheumatoid arthritis. I decided to see another rheumatologist at the medical center and on my first visit, I heard the diagnosis: scleroderma. At that time I was taking prednisone, placquenil, aspirin, and tramadol.
     
    I was so relieved to have a diagnosis finally! I thought that meant I would get the proper treatment, but the doctors said that there is no treatment or cure, and they could only treat the symptoms. The more I read about diffuse scleroderma, the more anxious and depressed I became – the future seemed dire. I would look at my beautiful daughter and wish that I could put her hair into ponytails, but my fingers had hardened into sticks and I didn?t have the dexterity to loop a ponytail holder around her fine soft hair.
     
    I grew alarmed as my skin tightening progressed to my chest, neck, face, and thighs. The edema was gone but my skin was tightening so that I didn?t have wrinkles in my forehead. My sclerodactyly prevented me from making fists and completely straightening my fingers. Another symptom was skin darkening. Everyone commented on my tan and assumed I had gone on a tropical vacation. Under normal circumstances, any middle-aged woman would want their wrinkles to disappear and be tanned all over, but I realized that my life was at stake.  
     
    I went to see a scleroderma expert who thought I had a rapidly progressing case (she actually wrote that my scleroderma was ?galloping along? in my chart) and suggested that I take my blood pressure everyday. She prescribed D-penicallamine and said I?d have to get my blood tested regularly. It was getting harder to dress myself, change diapers, and open baby food jars. Raynaud's was pretty bad that winter and I started to fear going outside. I started to worry that I would not live to see my children graduate. But I wasn?t going to give up.
     
    I found the Road Back Foundation and I read books and articles about scleroderma and antibiotic treatment. Naturally skeptical, I researched AP for 2-3 months and slowly everything started to make sense; I could see the connections. For example, Dr. Brown?s theory about mycoplasma causing autimmune disorders was just a theory until I realized that I had walking pneumonia at the beginning and mycoplasma pneumonia could have been the culprit. My acupuncturist also told me one day out of the blue that ?chinese medicine believes the health of the skin is related to the health of the lungs?. I also found an article from PubMed about how antibiotic reduced collagen in a mouse model of systemic sclerosis. With the theory, personal experience, and some evidence of basic science supporting AP, I stopped taking D-penicallamine, and weaned myself from my prednisone and placquenil. I started taking Minocin daily in October 2006 and probiotics daily in Nov.
     
    By January 2007, I felt that I was making slight progress, but still saw some symptom progression. Little achievements like being able to reach for the bottle on a top shelf again showed that my joints and tendons weren?t as tight. The tightness in my chest and thighs disappeared gradually and then the skin on my face and neck softened. I delighted in counting wrinkles on my forehead, because that meant I was getting better.
     
    After 9 months of AP, my doctors, including the scleroderma expert, proclaimed that I
    was slightly better. I also used acupuncture, and massage therapy on and off during this time for a neuromuscular condition, unrelated to scleroderma. I knew then that I was on the road back to my health and life, and I exhaled with relief.
     
    What were some of the signs of progress? I could: pick up the skin on the back of my hand, squat and stand from squatting more easily, stand for more than half an hour, and open a water bottle. I do have these nodules on my chest and back that aren?t painful (since Jan. ?06). I also have some neuralgia symptoms occasionally. My lungs are fine and I don?t have problems with reflux or swallowing so I am hoping that I won?t have internal organ involvement. My lab work continues to show I?m ANA – , RH – , and only test high for gamma globulin. My SED rate has gone down from 64 to 23 to 28.
     
    Now after 24 months of AP, I can do almost everything I need to do. I can go jogging, put up my daughters? hair into ponytails, cook, work, drive, dress my kids (little buttons) and get dressed easily. I can wear a moderate heel for short periods of time, and stand in non-heeled shoes for over 1.5 hours. My chief complaints are remaining sclerodactyly and Raynaud?s, but my fingers are better (softer and slightly skinnier) than last year so I hope that improvement continues. I may be imagining it but I think my Raynaud?s is better. Last winter just the act of climbing into bed would turn my fingers white, but this year they don?t seem to turn white as easily or quickly. I am feeling so much better that a few months ago I changed jobs – from a part-time teaching position to a full-time administrative position. I have not looked up the statistics, but I think that most people with diffuse scleroderma after 3 years are thinking about applying for disability rather than taking on full-time jobs with a hefty commute.
     
    I continue taking Minocin daily and get I.V. antibiotics every 6 months. I?ve also decided to donate to the Road Back Foundation twice a year because without their website, information, and support, I would not be the mom, wife, and professional I am today. I continue to go to the scleroderma expert because I want to show her that AP works. Granted, Minocin is not a miracle drug, but it fends off the ?bad guys? that have wrought havoc in my body. I believe Minocin will help my immune system slowly but surely win the battle and I am keeping my eye on crossing the Remission Line.

    #320638
    SusanSD
    Participant

    Diffuse Scleroderma Story ? 3 years of AP    (Oct. 2009)
     
    I have made some progress this year but it doesn?t seem like huge changes. I will take the status quo if my life and functioning is good.
     
    While my fingers are not completely straight, they?re functional. Flexion and extension range of motion for finger is somewhat improved (can make a tight fist with my fourth and fifth fingers, so the string won?t slide through). My finger extension is improved because I found my hand splints from the first year (representing my maximum range of motion). I can now extend my fingers from the curved splint position, so it?s measurable.
     
    I also did something that I never thought I?d do again – getting into an outdoor pool (in August) with water up to my chin and swimming a few pool lengths. I think that is a good indicator that my Raynaud?s is better because I used to get white hands just from walking within a heated home, let alone submerge myself in cool water. When I got out of the pool, my hands were pale pink, but not completely white or blue. It could be due to the NAC or the AP??either is fine so long as I am improving.
     
    I have been applying Palmer?s skin therapy oil to my raised scars on my chest for the past 5 months and I think they are slightly softened and less raised, although still visible.
     
    My lung function test was normal and echocardiogram was normal. My Vitamin D level is low so I?m taking a Vit. D pill once every month. Other than that, I continue with daily Minocin, a boatload of supplements and vitamins, and I.V. antibiotics every 6 months.
     
    I?ve had diffuse systemic sclerosis for ~4 years now, and I breathe a sigh of relief that the worst is behind me. I don?t think I?ll have internal organ involvement and I am trying to boost my immune system.
     
    I received an e-mail from a woman who has diffuse scleroderma for 3 years. She can barely type, can?t drive anymore or work, and has to sleep in a sitting position because of her reflux. They?ve referred her to hospice, saying she might last until December. She is only 38! That could have been me?..my docs said my scleroderma was ?galloping along? in my chart (before I reached my one year mark). This poor woman read my story on a non-RBF website and asked what I was taking (because this other website would not let me say I was taking an antibiotic). Of course I told her, but I worry that AP won?t work soon enough for her. I am so thankful for Dr. Brown, the RBF, and its dedicated board and volunteers, and for the support of my family and friends.
     
    I am sure others have noticed this analogy before, but I really think it?s apropos, because we chose a treatment path that?s not well-trodden:
     
    ?Two roads diverged in a wood, and I?
    I took the one less traveled by,
    And that has made all the difference.?
     
    –Robert Frost, The Road Not Taken  

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