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dimarzio

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About dimarzio

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  1. dimarzio

    Hi guys, Newly diagnosed and confused.

    Whilst I have no heart or lung symptoms, I have a periodic echocardiogram and lung function tests. This is normal practice where there is a diagnosis of Scleroderma. I too have been perplexed by different approaches taken by the rheumatologist, at times seeming negative and at others, more positive. General aches and pains are not uncommon, typically in the hips and lowerback, but also around other joints and in the neck. Exercise and physio can help a great deal.
  2. dimarzio

    Giving up.

    Live everyday as if it were your last. That's what I'm doing. I will fight this disease for as long as I can. The thyroid issue is pretty easy to fix. The kidney problems need more detail to be able to fix and I'm not sure what to say about the small vessel issue other than that a blood thinning drug might be able to help. Hope it all turns out well for you, but keep on fighting. Dimarzio.
  3. Hi Brenda, I am sorry that you have been diagnosed with Limited Scleroderma. Yes, your digestive problems could be caused by the disease, but there could be other causes too, e.g side affects of many commonly prescribed drugs or simply that our digestive systems can find it more difficult to tolerate certain foods as we get older. As far as collogen is concerned, I would be inclined to leave it well alone if possible since the disease causes an over production of the stuff in itself. Hope this was helpful. Dimarzio
  4. dimarzio

    Cellcept for Sine Scleroderma - Cardiac?

    Immunosuppressants can take some weeks before you have any effect, Regina. For how long have you been on them?
  5. dimarzio

    Cellcept for Sine Scleroderma - Cardiac?

    Whatever else you do, I'm sure that regular exercise and clean living will help. I've certainly found that fighting Scleroderma is much better than giving in to it, though.
  6. dimarzio

    Sine Scleroderma

    I had a jelly belly/spare tire amounting to around 14 pounds. In the last few months, I have lost 15 pounds. Spare tyre is still there, belt size is the same and I now have thin arms, legs and shoulders.
  7. dimarzio

    Anticentromere antibodies decrease

    Clearly, any immunosuppressant is going to suppress the activity of the immune system, which to me would explain why the antibody count is lower. I would therefore expect the numbers to go up again if you stopped taking the immunosuppressant. Plaquenil is not a cure, but it will presumably slow things down.
  8. dimarzio

    Sine Scleroderma

    I have limited scleroderma with no visible signs. The worst bits are the agonising aches and pains around the joints and terrible cramps.
  9. dimarzio

    Gastrointestinal problems

    Hi Deanne, just a thought about the problems you have raised. Firstly, could the problem be caused by the drugs you are taking for any other issues or symptoms; secondly, perhaps anti spasm medication could help with both the flatulence and fetal incontinence? Otherwise, seek medical advice. Hope this helps.
  10. Hi Deanne, I can't speak for cider vinegar, but I have been taking half a teaspoon full of bicarbonate of soda each day for a few weeks having found out that using this to reduce the PH level of the body can help with inflamation which may be associated with autoimmune diseases. I have also found that for me, this can help with acid reflux as well. It is cheap enough, so no harm in giving it a try. I would warn against taking too much though. I just dissolve half a teaspoon full in a glass of water with my evening meal. Taking too much might, I guess, give rise to potential malabsorption issues.
  11. I also tried a gluten free diet with no noticable benefits. I do find wholemeal bread better than white though. I am currently on a low carb diet which means limiting bread consumption and am feeling somewhat better for this. As with anything, your own mileage may vary.
  12. dimarzio

    Methotrexate/ Natural Treatment.

    I know three people that take it, one for a psoriasis, one for rheumatoid arthritis and one for lupus. None of them have mentioned any significant side effects or concerns. I understand that it is also useful for certain types of cancer. Methotrexate is a very common first line drug for autoimmune disorders.
  13. I asked my rheumatologist the same question. He said that in his 30 years of experience he had found very few who progressed from limited scleroderma to diffuse scleroderma, so that gives us a little more hope. I hope that the disease doesn't cause you too many problems and that you can continue to live a full and active life.
  14. The fact that we are all too podgy probably has something to do with it ,but I think there is more to it than that. Processed foods and chemicals maybe. I've managed to shed half a stone so far in a quest to get my glucose levels & BMI down. Will have to wait for the next Hba1c (hemoglobin) test to know. Not sure how much salad I can eat though before I start twitching like a rabbit.
  15. dimarzio

    Sauna

    When it gets cold, I get frostbite in my hands and feet and when it gets hot, I overheat. I haven't tried a sauna for about 40 years, but this thread has reminded me that I ought to give it a go. Raynaud's seems more about temperature changes than just cold alone. I can get Raynaud's attacks just from a cloud crossing in front of the sun or a thermal draught on a hot day.
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