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Everything posted by dimarzio

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. dimarzio


    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.
  10. I recognised this a while ago and eat a banana each day for potassium and take a magnesium supplement to counteract the proton pump inhibitors. Most of us need vitamin D, so I take that during the winter months too. I was wondering about cod liver oil, but there is a limit to how much of this stuff you can take without going OTT.
  11. Very interesting article Jo. 2 1/2 years after being dignosed with SSc, I have now been diagnosed full blown diabetic. As if the myriad of SSc symptoms is not enough, another set of problems to contend with!
  12. dimarzio

    My biggest fear.

    The only thing I can say to all of you is try to stay positive and make the most out of what time you have left, however long you think that may be. Of course, we all have hopes and fears and for most of us, it is the fear of the speed of progression. That's one of my biggest worries, but however fast or slow it may be, I am trying to keep as fit as I can, constantly pushing myself against the odds and taking the time to rest up when I need to. One of my biggest problems is that nobody I know seems to think that there is anything seriously wrong with me and has no idea of the constant pain I am hiding.
  13. dimarzio

    My biggest fear.

    Haha, I can sympathise with that. I have put a lot of money into pensions over the years, but if I do go early, then my wife will hopefully benefit from the widows pension for many more years.
  14. dimarzio

    Couple questions from a newbie.

    This could be many things Jen and of course you should obtain medical advice as quickly as possible along with any relevant tests. However, what you are describing brings something called 'coup de sabre' to mind. You may wish to look this up for further information. Whatever it turns out to be, I wish you good luck with your diagnosis and treatment.
  15. I was getting flu like symptoms for several years before I was diagnosed and put them down to allergies. I still have flu like aches and pains most of the time and exercise seems to be the best way to relieve them. I also get a runny nose and itchy and running eyes, particularly first thing in the morning. I put most of this down to my immune system working overtime and simply my body responding to this as it would if it were fighting the real flu.
  16. Hi Ana. I'm sorry that you have been suffering from so many problems, but Jo is right that your symptoms could relate to a number of causes. I just wanted to comment on your strange cough and say that I have come across a number of people who describe a strange cough as side effect of taking calcium channel inhibitors (e.g. Ramipril). Just wondering if you take these and if so, did the onset of the cough coincide with when you started taking them?
  17. dimarzio

    What tests should I do?

    No, you need to see a rheumatologist and have an ANA test done. A full set of blood tests might be helpful if you can. There is only a very small chance of heredity and you shouldn't worry too much unless you have symptoms.
  18. dimarzio

    Diagnosis of Systemic Scleroderma

    The problem is that so many issues and symptoms keep cropping up that nobody believes that you can be affected in so many different ways. I was told by my general practitioner that there was nothing wrong with me because I had had all the tests and to go away and stop wasting everyone's time. That was a month or two before the SSc diagnosis. Every time I said I was having problems, they just added higher and higher doses of anti depressants until I could barely stand up, let alone walk. I've been a lot better since I weaned myself off them.
  19. dimarzio

    Diagnosis of Systemic Scleroderma

    I had never heard of Scleroderma before I was diagnosed with it either. The problem is that no one else has heard of it either and because they've never heard of it they don't think it's that serious. The doctors are just as bad; only one has been honest enough to admit that he knows nothing about it, the rest try to blag it until I start asking questions they can't answer. I do believe that none of the GPs in my local surgery think that it's serious because if it's something they have never come across before, it can't be bad.
  20. dimarzio

    Freezing toes.

    Long johns, thermal socks, thermal hat, gloves and a warm scarf for me in the UK this week. Thinking of trying a snood next.
  21. I thought that Scleroderma was causing a lot of my digestive problems, but when I stopped using the anti depressants they were giving me for my "imaginary symptoms" before they eventually diagnosed Scleroderma, a lot of them improved.
  22. dimarzio


    Glad you got that sorted. I do get the feeling that my headaches may be down to blood vessel constriction. Might also be related to ocular bloodflow causing eye strain. Just a feeling based on experience.
  23. Hi Yoshi. Sorry to hear that you are having problems that may be SSc related. It's a bit of a 'how long is a piece of string' question as the disease affects so many people so differently over largely differing timescales. Apparently there is only a very small level of heredity, but I have read enough on this forum to question this. I have Limited Ssc and my rheumatologist told me that in his experience, very few with the limited variant ever go on to get full blown Scleroderma. Life expectancy with Limited SSc is close to normal, but for diffuse patients, the outcome is not so great. There is a section on this site somewhere that covers life expectancy. I'm finding that a positive outlook is very beneficial. Accepting that I have this illness but pushing myself as hard as I can and trying to achieve as much as I can on my bucket list. I may have 2 more years or I may have 22. I don't know, but that is the case for everyone really. Things can change. 2 years ago, I couldn't drive, could barely walk, couldn't go outdoors in the winter, was planning my funeral and looking at assisted suicide, now I am learning to fly paramotors, largely because I was given medication which has kept most of my physical symptoms under control along with a lot of effort and willpower. I hope things turn out well for you and that you continue to share your experiences on the forum.
  24. dimarzio

    New to this site with many questions

    I've learned to live with the tiredness. I don't try to fight it so much any more. If I need a lie down, I have a lie down. Sometimes I just need another coffee to keep me going for an hour or two. Best not to fight it too much though. Take a break, take a nap if you can and you will feel much better for it.
  25. I get hot and cold due to circulation problems. It takes me a very long time to adjust to moving from a warm room to a cooler room, from being indoors to outdoors or from shade to sunshine. I also feel feverish at times. Cold one minute to burning the next. It feels like the flu, but I put it down to an over active immune system. Certain drugs can also have this effect. There is a lot to consider when you have Scleroderma.