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miocean

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Everything posted by miocean

  1. miocean

    Calcinosis Update

    Shelley, no one ever said anything about Vitamin D and recently, since my level was low I was put on Vitamin D3 1,000 mg and then raised to 2,000 mg. I don't know if it correlates but there is an increase in the calcinosis recently. I am not on any blood thinners nor have I had my vitamin K levels checked. I know that dialysis can cause calcinosis but it is getting worse and I am not on dialysis, thankfully. Jo, I bought a cushion to sit on but it puts the pressure right on the areas that hurt the most so it doesn't work. I am usually ok on a soft surface, hard wood chairs are killers. I would need to carry around a huge inner tube I am going to check with my doctors about my Vitamin D. My level was 31, the low normal is 30. miocean
  2. I never qualified for any trials due to the renal failure. However, I am participating in two studies, one on pulmonary hypertension in scleroderma (PHAROS) and the other on calcinosis in scleroderma. I am hoping it will help someone somewhere sometime. I had a follow up with the PHAROS Study this week. It involved filling out a questionnaire again. This is done approximately every 6 months. I found out I am one of 37 patients in the study under my doctor. It is a national study and there are many other doctors participating. I was told there are two more years for it. I hope this study helps find answers to pulmonary hypertension in scleroderma patients. miocean
  3. I bookmarked the Amazon Smile sign in so there is no confusion when I shop. I also resent an email to my friends requesting they use the link to shop. Every little bit helps. miocean
  4. miocean

    Saw my Sclero doctor yesterday

    Dear quiltfairy, It is always good to be pleased with an appointment. I am glad your doctor is scheduling the right tests for you. I hope you are keeping copies of all of them. Keep us posted on your progress with the muscle pain and the results of the MRI. miocean
  5. I was going to bring up what Amanda did about our two members who died after stem cell transplants. However, there are others who have done well. I didn't qualify for the SCOT trial due to renal failure but if I had I would have tried it. Since you are investigating all options, look into it. Ask John Hopkins about it when you go there. miocean
  6. miocean

    Feeling Discouraged

    I need to vent a little today and what better place than here where I know you will understand... For years I have been putting up with discomfort from calcinosis on my lower buttocks. There are many posts on threads about my continuing saga. For some reason the deposits are multiplying and the one painful area really hurts, not only when I am sitting but when standing, walking, and laying down. I have two spots that are near the surface and are right where the buttocks and thigh meet so they are in a crease. When I awaken in the morning the first thing I sense is a hot poker sticking me in that area. I have cushions on chairs all over my house to make them a little more comfortable. I contacted two scleroderma specialists and have been told there is nothing that can be done. They don't know why calcinosis forms. They don't have a treatment that has shown to help it. The procedure for surgical excision is too dangerous for me with pulmonary hypertension and the high risk of infection, plus, after surgery they can come back. The studies that have been done are small with very limited success. I just don't understand why my doctors aren't willing to try something that is less invasive than surgery... I am frustrated with hearing there is nothing that can be done, more so than being turned down for a lung transplant. This seems so minor in comparison, why can't they figure this out? I am in a study for calcinosis with my scleroderma specialist but all she does is measure it. I don't want to end up on pain medication, I take enough pills as it is. Thanks for listening, miocean
  7. miocean

    Feeling Discouraged

    Yes, Margaret, after a year of testing I was turned down due to esophageal dismotility, scleroderma, kidney transplant and skin cancer. I've decided not to pursue a transplant at another center right now because the last year was exhausting and that center is only 1-2 hours away. The third center would be a days trip there. Fortunately I am doing well with oxygen for exertion only. Thanks for your kind thought. miocean
  8. Dear CanBrit, It is so confusing trying to figure out what doctor to see! If I were you I would explore every avenue and ask for referrals to a rhuematologist and a dermatologist and I would research ones that are familiar with scleroderma (not an easy task.) I wouldn't want another colonoscopy either. I had 2 in one year and that was plenty! Best wishes with finding answers. miocean
  9. miocean

    Graft vs Host disease

    HI Chip, You are the first to bring this up in the years I have been using this forum as far was I can remember. Please keep in mind that none of us knows what caused our scleroderma. Regardless of what caused it we are here to help and support you and your husband. Can you let us know what symptoms you husband has that led to the diagnosis of scleroderma and what kind of scleroderma he has? We can help more with that information. Thanks for checking in with the forum, miocean
  10. miocean

    Possible Sclero new with questions.

    Hi Amy, I hope you get the ANA results soon and that the symptoms you have had abated and were just from the cold weather. Let us know, okay? miocean
  11. miocean

    Feeling Discouraged

    Thanks everyone!
  12. At the start of my disease I tried cyclosphosphamide infusions but after two monthly treatments became toxic and they were stopped. It was also explained to me that although there may be an initial improvement, this treatment cannot be continued indefinitely and that after time there is a leveling off and those who were treated and those untreated end up at the same point. Of course, there are always exceptions to anything, Jo is one who had great success with treatment. I take myfortic as an anti-rejection medication. It is similar to cellcept and mycophenolate. My skin had begun to soften from 45 to 27 before my kidney transplant but improved tremendously immediately after and went from 27 to 0 over a couple of years. My PFT's. and 6 Minute Walk Tests also improved. Whether this had anything to do with the medication or the natural progression of the disease I am not sure. I am amazed at the lack of studies for scleroderma. There certainly doesn't seem to be any lack of patients because although rare, it is not that uncommon. It is so frustrating to hear that they don't know why something happens, works or doesn't work, or that there is nothing that can be done. You are really investigating things, keep on looking for answers. What works for you might not work for another, that is what makes this disease so difficult. miocean
  13. I second Judy. I have a friend who had a positive ANA test a couple of years ago but no symptoms of any autoimmune disease. She is healthy and perfectly fine now and her ANA is in the normal range. You've had a rough year, having those miscarriages must be draining emotionally and physically. Think positively and give yourself time to heal. miocean
  14. miocean

    Just got done with seeing my Sclero specialist

    Great news on your lung function tests! miocean
  15. Dear Shelley, I am very sorry to hear about your son... miocean
  16. miocean

    Feeling Discouraged

    I am planning on asking the doctor about the calcinosis study on my appointment in early December. When asked if I'd participate I agreed knowing it would not include treatment but figured anything I could do to help scleroderma research I would. In this NIH article, the most current I could find any information on, were the following treatments I am interested in: Myo-inositol hexaphosphate (InsP6, phytate). Extracorporeal shock wave lithotripsy (ESWL). Carbon dioxide laser. Surgery: I saw the surgeon who removed the calcinosis from my neck almost 10 years ago. After looking at the CT scan he noted the calcinosis is extensive and goes from my pelvic area down through my thighs. Surgery to remove it could be done one side or both at a time. It would involve 2 hours under general anesthesia, drains put in, 2 days in the hospital and a high risk of infection. I wouldn't be able to sit or lay on my back, I didn't even ask for how long because by then I was thinking no way. All of my doctors, including my pulmonary hypertension specialist have determined that this is too risky for me unless it is done in an acute cardiac care hospital with doctors knowledgeable about PH. I was most interested in the myo-inositol cream, hoping I could get a prescription and have a compound pharmacy make it up. As I said, the studies are very limited and the success as well. I'm willing to try something, though. I have to admit between the pain, frustration, the time change, the weather getting cold, lack of sunlight, and missing my days sitting on the beach and staring at the ocean I have been in a bit of a funk. I don't seem to have a whole lot of energy, lack motivation, and am procrastinating. I have been using my "happy light" and it helps a little. I hate complaining. I'm used to being the positive one. It's so discouraging to think that with everything I went through with the kidney and all the testing for the lung transplant what's getting me the most is pain in the buttocks! miocean
  17. miocean

    Is today the day?

    That's the spirit! miocean
  18. miocean

    New to this disease..

    It is nice to hear you are getting so much support from family and your doctor seems to be doing the right things. Dealing with a disease is really frightening, especially when you don't have the answers. Prepare yourself for a roller coaster ride, because that is what it like; you will have your ups and downs. A recent example I can give you for me is that a recent pulmonary function test showed my diffusion rate had decrease by 7% down to 25 which is very low. I was very upset about this as I have been turned down for a lung transplant at 2 centers. However, my recent Echo shows improvement and a recent spirometry at my pulmonary doctor also showed improvement. I can't figure it out and try not to get too overworked about anything these days. It's taken me a long time to understand a number is just a number and can vary for many reasons. My hair also fell out all over my body. I am very fair so it grew back but curly. The good thing about this is I was starting to get normal peach fuzz on my face, almost had a light mustache, and that is all gone now! miocean
  19. miocean

    Just got done with seeing my Sclero specialist

    I can tell you what my symptoms preceding renal failure were. My feet were very swollen. My blood pressure skyrocketed. My urine was very foamy. I felt very sick. Any of the drug stores will have blood pressure monitors but I got mine at Costco. Foamy urine can be caused by many things, sometimes it is from what was used to clean the toilet. I still get a little freaked out if I see foamy urine but know there can be many causes and I get tested a lot so I know I am not in rejection. miocean
  20. The cushion to sit on makes my calcinosis a little less painful. Today I ordered a table to paint on. Not only am I able to get things to help me, I am helping the International Scleroderma Network! miocean
  21. miocean

    Just got done with seeing my Sclero specialist

    Good luck with the methotextrate. I hope you have good results with very little side effects. miocean
  22. miocean

    Looking for help

    My insurance doesn't cover the massage therapy but there are some that do if the doctor performs the massage. Years ago it was covered that way but my doctor doesn't do them, he has a therapist come in.
  23. miocean

    Question about tendon friction rubs

    Greypilgrim, I just sent you a message. Good luck with your appointment. miocean
  24. miocean

    Question about tendon friction rubs

    I had really bad tendon friction rubs on my ankles and wrists. I felt like the Tin Man in the Wizard of Oz...you could actually hear them. My physical therapist used a cold laser on them. That along with gentle exercise helped a lot. I also get weekly massages. I don't have the tendon friction rubs anymore, but it took years for them to go away. I'm trying to remember if they went away around the same time my skin began to soften. Is your skin hard? miocean
  25. miocean

    Hello Again

    Hi Jean, I am dreading the cold as well. Sometimes I have to take a break from things, too. I think we all do. Good to see you back. miocean
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