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Found 3 results

  1. Effect of disease-modifying anti-rheumatic drugs (DMARDs) on bone structure and strength in psoriatic arthritis (PsA) patients. Despite longer disease duration, bDMARD-treated PsA patients benefit from higher bone mass and better bone strength than PsA patients receiving methotrexate or no DMARDs. PubMed, Arthritis Res Ther, 2019 Jul 3;21(1):162. (Also see Psoriasis and Psoriatic Arthritis and Disease-Modifying Anti_Rheumatic Drugs) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. When to Get Your Bone Density Tested. Updated guidelines can help women decide when to have bone density screening but may discourage men. New York Times, 07/16/2018. (Also see Osteoporosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Yesterday was a 12 hour day at my scleroderma center between travel time, tests, and meeting with the specialist. I had my yearly Pulmonary Function Test and afterwards compared my Total Lung Capacity (TLC) and diffusion rate (DCLO or Dsb). They went down: TLC from 78% to 61% and Dsb from 39% to 37%. Then I had my 6 minute walk. Last year I started at 98% on room air and at the end of the test was at 96%, walked 1533 feet and did not desaturate during the test. This year I started at 98%, at 4 minutes dropped to 88%, was given 2 liters of oxygen and at the end of the test was at 92%. I walked 1468 feet. This is a decline and I know from past experience that dropping that low usually means home oxygen therapy. I asked the techs if they though I would need it and they didn't think I would because I came up very quickly after getting the oxygen. After that came my Echocardiogram (Echo) The center lost power during the last picture of my test! Even though the machine was plugged into a "red" plug that goes directly to generator, it screwed up my test and it wouldn't upload. So that meant a long phone call to tech support, three other people in the room all telling the tech to do different things, and I am just thinking this is so par for the course for me and now I have ANOTHER story to tell about my mishaps with the medical machine. The end result is that my test would have to be read manually from the machine. My guess is that it will have to be done again. Fast forward a couple of hours to my appointment with my scleroderma specialist. She did not have the results of my Echo. Because of the decline in lung function I will need a CT scan of my lungs, no surprise. I knew that was coming. They were holding off on an annual CT scan because I have been exposed to so much radiation over the years, but now it will be necessary. Depending on the CT scan and Echo a determination will be made for a right heart catherization. I've already had 2 due to pre-testing for the kidney transplant so I know what to expect and I knew this was coming. She also gave me a prescription for home oxygen to use when "I am on the treadmill or doing aerobic exercise" (I do neither.) I said I understood that legally the script would have to be written due to the drop below 88% but that in all honesty I would not get this set up right away. I am going away and cannot get it set up before I go or where I am going. I have an appointment with my local pulmonologist when I return and will run everything by him, as well as another consultant. I brought up the calcinosis on my buttocks, something that has been an issue since onset 8 years ago and hasn't been given much attention and all of a sudden I became a patient of interest! My doctor is taking part in a research study on calcinosis. It is a 3 year study to track the development and severity of it in scleroderma patients. I have paperwork to read and sign, my doctor insisted on my taking it home and reading it very carefully. Basically it allows access to my medical information, there are no drugs involved, tests would be covered by my insurance, and I can withdraw at any time. I was asked if I had calcinosis on any other part of my body and I reminded her that in 2006 I had a biopsy done at my C-2 C-3 vertibrae for a mass that turned out to be calcinosis. I even made the medical journals for that one because it is an unusual place for it to form. She didn't remember so I pulled out my handy dandy looseleaf notebook, organized by organ or body part and whipped out pages of reports and tests from this. She made copies to look over and gave me prescriptions for x-rays of my buttocks and hands (so much for the exposure to radiation.) Then we went over the results of my bone density scan from November. My gynecologist prescribed it and went over the results with me then, in general things have improved each year since my transplant, except for a small negative change on a hip. I have been diagnosed with Oestopenia for several years. My gyn did not see any problems with the report but my scleroderma specialist did so I now have a prescription for Fosamax but cannot go on it until I discuss it with my nephrologist and will also run it by the others on my medical team and that won't be for a couple of weeks. So I now have 20 pieces of paper to add to my already way to thick file and plan on putting everything aside for a while since I cannot do anything about them right now and nothing is so important it cannot wait. Sometimes I just get tired of it all. All of it is starting all over again, the testing, the doctor's, more medications. I have diffuse scleroderma with total organ involvement, a kidney transplant, medicine that causes cancer to prevent rejection and causes even more GI problems than the scleroderma by itself, the only treatment for my lungs would be lung transplantation, blah, blah, blah, we all know the drill. I try to stay positive but other times I just want to say "I QUIT!" I know you are the only ones I can openly express this to, and know this is just temporary. If you have any advice, especially about the calcinosis study or the tests and medications, I appreciate it. miocean
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