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miocean

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Posts posted by miocean


  1. 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 had my 6 month appointment with my scleroderma specialist and have some information to update on my calcinosis on the buttocks issue. The calcinosis are in the soft tissue of my lower buttocks and down my inner thighs. The biggest mass is on the right side, measures the size of a large orange, the left side is the size of a small orange but that is the side where they are on the surface and hurt the most. Imagine bags the size of the oranges filled with rocks and pebbles of all different sizes and shapes, some smooth and some pointed, then put them where you sit and that is my nemesis right now. The discouraging thing is that they do not know why calcinosis forms or what helps to get rid of it, nothing seems to work.

     

    I am in a study, A Prospective, Observational Study of Calcinosis in a single-center population with scleroderma-spectrum disorders. This is purely observational and is to help understand who may be at risk for calcinosis, why it occurs in some and not in others. My doctor measures the calcinosis and takes notes but that is all. Since I had a small amount of leakage from one on the surface I am now in another study, Crystal analysis of draining material from scleroderma-related calcinosis site. The expectation is to permit better understanding of the composition of the calcinosis, what pathways may be abnormal in allowing these to form in the soft tissues, and why some are more destructive than others. The goal is to find better treatment for scleroderma calcinosis. I have some small vials to capture any leakage, even if it is the smallest drop on the tip of a cotton swab, and packaging to mail it in.

     

    My doctor suggested using heat to make it feel better so I am sitting on a heating pad right now. She also suggested a product like Ben-Gay and just the thought of that makes me want to cry. I wake up in the morning in pain, have trouble sitting places, and it even hurts when I walk now. I bought a cushion to sit on but that puts the pressure right on them so that is no good. I am considering exploring more surgical options at different locations in the future to see if there is a less invasive way of giving me some relief.

     

    It is thought that for some reason the body is drawing calcium out of the bones and depositing it in the soft tissues. I am scheduled for a bone density test later this week. My doctor has been wanting to put me on medication for osteopenia for a while now but things like the kidney transplant and my esophagus have put it off. She said there are many doctors studying the calcinosis process right now so hopefully answers will be coming soon to help.

     

    I'll keep you posted.

     

    miocean


  4. 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


  5. 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


  6. 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


  7. 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


  8. 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


  9. 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

     

     


  10. 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


  11. 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


  12. 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

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