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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Amanda Thorpe

    Update on Lung Transplant Evaluation

    Hello Miocean Yet another blow, you should know, you have made it through many others. I don't imagine having a kidney transplant was a walk in the park. Maybe consider what Shelley said in her second post on this topic: "Now, the flip side of this, and maybe the happiest thought of all for you, is that if they decline you anyway, regardless of what reason, then what or who is to stop you from enjoying your ocean and sun activities? Sometimes, it just seems that life is short, it is meant to be enjoyed, and it's not the end of the world if we just simply enjoy it. Many people have preferred their vice (or habit) over longevity. The human race is rife with examples! So if that is the route we choose, it is what we knowingly choose and who cares if someone else would decide differently?" Surviving a progressive, incurable illness can give us the perpetual need to survive-at-all-costs-as-long-as-possible mentality but we might actually be better off considering the enjoying-what's-left-of-our-life-as-much-as-possible mentality. Sometimes it's worth taking a moment to consider this. Whatever happens every single one of us here is on your side wishing we could be by your side. Take care.
  2. This topic supplements the topic "Morphea - localised scleroderma" . UVA1 phototherapy is currently recommended as the first line treatment for morphea and can even treat long established morphea. It is very common for morphea to occur along with linear scleroderma, since they are both forms of localised scleroderma.‚Äč It is possible to have non skin manifestations with localised scleroderma but It's important to note that localised scleroderma does not become systemic scleroderma, they are two entirely separate diseases although it it possible to have both. "A 2003 large multinational study found that 25% of people with localised scleroderma had at least one other manifestation, such as osteoarticular, neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn) respiratory, cardiac or renal. Less that 4% of people with morphea had more than two non skin manifestations and none of the people in the study went on to develop systemic scleroderma." Approximately 2% of people with morphea have anti-centromere (ACA) antibodies, which means that they may be at risk of also developing systemic scleroderma. People with morphea should therefore have annual physical examinations to check for any additional symptoms and also be tested for the anticentromere antibodies (ACA).
  3. Hello CmeBe Welcome to the forums. Raynaud's is an extreme spasm of the blood vessels in the extremities in response to cold or stress. It is not necessary to have the whole red, white and blue colour change experience to have Raynaud's. In fact I have mild Raynaud's and have no colour changes at all, I didn't even know I had in until diagnosed with it when I had a nailfold capilleroscopy . Stress is my problem, I can actually feel my fingers, followed by my toes, go cold when I get stressed. Cramp is my worst Raynaud's symptom as well. If you seriously think you might have scleroderma then I'm with Jo, see a scleroderma expert, even if they said you didn't have it at least you'd know for sure. It really is a complex and difficult disease to diagnose given that there is no one specific test that rules it in or out. Rather diagnosis is achieved with a combination of medical history, clinical exam, test results, maybe biopsy and blood tests to support diagnosis. You might find these videos helpful: diagnosis of scleroderma and symptoms of scleroderma. The diagnostic process is not simple or quick when it comes to scleroderma so why not have a wander around the site and post anymore questions that you have here. Take care.
  4. Amanda Thorpe

    Anyone Anti-PM/Scl positive?

    Hello Delilah Welcome to the forums. Have a look at our videos about diagnosis of scleroderma and difficult diagnosis in scleroderma, the function of the blood test is to support a diagnosis/support ruling one out, they should not be used in isolation to do either. Not only can antibodies change, as you know, but it's possible to have scleroderma with negative antibodies as well as having positive antibodies but no symptoms...ever. I have systemic and localised scleroderma but my antibodies have always been negative. Based on this I was told it was unlikely I would ever develop internal organ involvement, about 12-18 months after this glib reassurance I not only had internal organ involvement but was life threateningly ill. Scleroderma should be diagnosed using clinical symptoms, medical history, perhaps biopsy but not just on the results of blood tests. Try not to think of yourself as a ticking bomb, you may not even be ticking. Take care.
  5. Amanda Thorpe

    En coup de sabre.

    Hello Kate Mycophenolate takes around 3 months before it starts to work so I have no idea what your consultant is doing but I don't see how it can work... It might be an idea to read up on mycophenolate and discuss it with the doctor... However, Shelley's quite right UVA1 phototherapy is now the first line treatment for localised scleroderma of which en coupe is one type. Mycophenolate is usually used for systemic scleroderma. You might want to find a consultant more familiar with scleroderma... Take care.
  6. Amanda Thorpe

    En coup de sabre.

    Hello Dee Welcome and well done! You daughter's coped so well with a difficult disease because of your influence and to say thank you she's made you a grand ma and ultimately a great grandma! I'm a great aunt but "just" a grandma and, oh my, aren't they peculiar little critters! How can something with so small legs move so quickly? How can the owner of such a face have done that...no, that's right... nothing done...good as gold! Take care.
  7. Amanda Thorpe

    Need advice please!

    PS: Jess, I forgot to say, I have IC and you would know if you were having it, not that you would know you had IC but you would know something was terribly wrong. When IC is in flare it obscures everything else, although I found the pain to be bearable (history of migraine, sciatica, IBS so no stranger to pain unfortunately) the need to pee was not. When in flare even a teaspoon of urine can inflame the bladder and cause that need to pee which as Shelley said can be 20 times in 24 hours, breaking it down further that can be every 15 minutes. Not that emptying the bladder actually brings any relief, well for a few minutes at a time I guess. Trust me you would know...even if doctors don't...took me 19 years to get a diagnosis. Take care.
  8. Amanda Thorpe

    Need advice please!

    Hello Jess Have a look at our video listing those symptoms Shelley has mentioned and I concur blood work is only a minor player, they help confirm/deny scleroderma in conjunction with symptoms and history which are far more important. I have diffuse scleroderma but have negative blood work and always have, even when I was seriously ill (as in getting ready to check out) in 2010. I appreciate how difficult it is to have a collection of symptoms and no specific diagnosis to pin them on. When diagnosed it was terrible but the no diagnosis would have been worse. Have a look at our video difficult diagnosis which acknowledges that lack of diagnosis can impact on self esteem. Take care and remember, you qualify to be here!
  9. Amanda Thorpe

    Calcinosis on buttocks

    Hello Miocean I just had that, an ulcer on the derriere that is and it's just the end...literally. Thankfully it healed quickly and was higher up as it were, an area of morphea just became sore and open, no idea why but thankfully it was short lived. I am sorry that I know what you know, calcinosis has no real treatment and often returns, that said maybe surgery would work for you, if not permanently for some time? What have you got to lose? Keep us posted. Take care.
  10. Hello Gunther Well, at least you have found us now. My first 12 to 18 months after diagnosis I had two emotional settings, asleep or hysterical...ask my husband he will confirm it. I think it's common to anyone diagnosed with a life changing condition that's unpredictable, relentless etc. It's a lot to contend with, the impact on ourselves, then add in the impact on our loved ones, side effects, pain, fatigue, loss of mobility and all the other wonderful symptoms. It's a wonder they don't issue straight jackets at the point of diagnosis, that and elephant size tranquillisers for our loved ones. It is unrealistic to expect we would carry on regardless, no one could. Anyways time marches on and here we are. Take care.
  11. Amanda Thorpe

    Update on Lung Transplant Evaluation

    Hello Miocean Yet again it amazes me how well you go through what scleroderma throws your way, you are amazing and I'm not the only one who thinks so. You will sail through any procedure and thank you for sharing your journey with us. Take care.
  12. Hello Jiffy Count me in! I have diffuse systemic scleroderma and localised scleroderma, diagnosed 7 years ago on my 10th wedding anniversary. Based on my experience I would recommend two things, seeing a scleroderma expert and getting support from other people with scleroderma whether via the internet or a face to face support group. I and my husband run such a group for sufferers and their partners, Jo and her husband regularly join us, I am glad of this for a number of reasons such as they're lovely people we're privileged to call friends and Jo's story is just as important as everyone else's. it's important to hear about people who recover so well so quickly but remember that despite this Jo and Robert would have had awful experiences like wondering if Jo would survive and the side effects of the treatment. I won't beat about the bush, it's a bumpy ride for sure with ups and downs which is why you'll want the above and we hope to see you here more and more, the people here have a wealth of experience that you can benefit from. Take care and keep posting.
  13. Amanda Thorpe

    Scl-70 antibody

    Hello Baycitybeth Welcome to the forums although I am sorry your son has scleroderma. Good news is that localised scleroderma is never fatal as it never affects the internal organs, it can still be something to contend with though. Localised scleroderma includes morphea and linear scleroderma encompassing en coup de sabre.Linear scleroderma is a line of thickened skin which can affect the bones and muscles underneath it, thus limiting the motion of the affected joints and muscles. It most often occurs in the arms, legs, or forehead, and may occur in more than one area. When it affects the forehead it's called en coup de sabre, it appears as an indented, vertical, colorless, line of skin on the forehead. The indentation looks as though the person may have been struck by a sword hence the name. Morphea affects the skin and sometimes underlying muscles and joints, which can cause disability. It's most common form is a plaque-type that affects only skin and that often begins fading 3 to 5 years after onset, even without treatment. However the deeper, rapidly spreading forms of morphea require early diagnosis and, if possible, treatment by a scleroderma expert. Currently, UVA1 phototherapy is widely recommended as a first-line treatment for morphea, and it is also used for treating well-established morphea. It's worth pointing out that morphea can cause symptoms outside of skin involvement: "A 2003 large multinational study found that 25% of localized patients had at least one other manifestation, such as osteoarticular, neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of the morphea patients had more than two non-cutaneous (non-skin) manifestations, and none of the patients in the study developed systemic scleroderma during the follow-up." Now developing non skin manifestations does not mean that morphea is becoming systemic scleroderma, they are in fact two entirely separate diseases. However approximately 2% of morphea patients have anti-centromere (ACA) antibodies, which means that they may be at risk for also developing systemic scleroderma. This means that 98% of people do not develop the systemic form of the disease as well. Antibodies can change from positive to negative but this does not necessarily mean much in practice. Blood tests are performed to look for specific antibodies to help achieve a diagnosis or to help rule scleroderma out. However blood tests alone should not be used to diagnose or rule out scleroderma because it is possible to have positive blood work but have no symptoms and never develop any, equally it is possible to have scleroderma, including systemic, but have negative blood work. I have diffuse systemic scleroderma, morphea and bullous morphea but my blood work is now and always has been negative. I know there's a lot of information here but I wanted to cover everything as you don't say what type of localised scleroderma your son has. What type does he have and how are his symptoms? Take care.
  14. Amanda Thorpe

    I am thinking this is En Coup De Sabre...

    Hello Athora I was told by one doctor that the tight skin on my shins was leaking veins, actually it was systemic sclerosis. Here's the thing, this is happening to you and if your doctor is wrong he's not the one experiencing the consequences you are. It would be a good idea to ask to be referred to a scleroderma expert because even if they say it's not en coupe at least you will know for sure. Scleroderma is so complex and most doctors have not seen it so bearing that in mind how can they competently say it's not scleroderma? Does the doctor in question even know what it looks like? How many patients have they seen with en coupe? Take care.
  15. Amanda Thorpe

    I think I have scleroderma

    Hello Ugh You couldn't have ended up in a better place after googling your symptoms, even if you don't have scleroderma. Interestingly in an attempt to alleviate your stress you're increasing it! Caffeine and nicotine are not on any list for relieving stress, quite the opposite, even if smoking makes you feel better the cost to pocket and health will eventually stress you out for sure! Discussing your health concerns with a doctor and perhaps the issues causing your stress with a counsellor you would be amazed what a difference it makes talking to a trained individual. Either way I hope you get to the bottom of your health concerns and are able to manage your stress. Take care.
  16. Amanda Thorpe

    Birth of Baby Antelope

    Wow Kathy! The only thing I have seen give birth is a cat and my sister. Very different experiences as you can imagine. How wonderful to see new life come into the world! Take care.
  17. Amanda Thorpe

    Limited Systemic Sclerosis and Morphea

    Hello Laura No worries, glad it helped? After you visit your rheumatologist let us know what they say. Take care and keep posting.
  18. Amanda Thorpe

    Taking myself off meds...

    Hello Amberjolie I totally understand and have done this myself, I stopped mycophenolate and methotrexate, albeit because of side effects of crippling headaches and nausea. Mind you weight gain is a side effect! Weight gain can be an issue because of medication, lack of exercise, disability, diet, mood and so forth, often we just have to accept the extra weight gained. Our scleroderma bodies, more often than not, aren't what we would have chosen or envisaged but they're ours and we need to love them, at least accept them, and this usually includes extra weight, we no longer have a flat stomach, we may be a bigger dress size. However, there are times when the amount of weight gained(ing) is beyond what our bodies can carry and we can accept. When this happens I think weight is so serious a problem, especially if it isn't controlled, as to merit a change in medication. Well I changed my medication because I gained and continued to gain weight. It went beyond vanity, I'm not talking about going up a dress size but enough weight to change my shape, enough weight if it had continued to make me obese and more. Buying some clothing the next size up is one thing, needing an entire wardrobe change quite another. I no longer recognised me. I also wondered if medication made any difference, after all I developed myocardial fibrosis on it but I had skin softening too. Who knows how much worse the fibrosis could have/would have been and what else would have happened if I had stopped medication earlier. Your guess is as good as mine! To me the deciding factor now is whether the effects of medication are worse than whatever problem it's supposed to alleviate. If medication is worse it's gone, no hesitation, but that's just me. I agree with Jo, it's unlikely your accident was because of any deterioration between stopping the medication and when it happened. You can either see how it goes, accepting that any internal damage may only be declared via symptoms by which time what's done is done. I hear ya when you say you're heartily sick of medication but realistically, as a person with scleroderma, I would have thought your chances of being medication free are nil therefore maybe consider different medication/dose/combinations? Let us know how you go amd take care.
  19. Amanda Thorpe

    Staying Sane while Seeking Diagnosis?

    Hello Brianala As awful a diagnosis as scleroderma is you already know that the diagnosis of no is even worse so should you get a scleroderma diagnosis it won't seem as bad as it actually is...until later! Seriously whatever you are dealing with you want the correct dignosis not a quick but ultimately wrong diagnosis. Should you actually get a connective tissue disease you already know where we are so you're ahead again already and now that you've started you must keep us informed. Take care and keep posting.
  20. Amanda Thorpe

    Opsumit (Macitentan)

    Hello Lilaclilly Welcome and I second Shelley! There are no medals for martyrs, your friend should see the doctor as maybe a small tweak in dosage or frequency of the medication might help. Sometimes side effects become worse than the disease itself, I certainly stopped taking an immunosuppressant and then a DMARD (disease modifying anti-rhuematic drug) because of the side effects. My thinking was quality not quantity. Take care.
  21. Amanda Thorpe

    Weight Gain

    Hello Nicky Welcome to the forums! I have taken methotrexate myself and don't recall weight gain issues nor could I find it as a listed, known side effect. MedicineNet.Com has a very thorough list of possible side effects and again weight gain is not mentioned. Is it possible that because of the methotrexate albeit indirectly, you've not been feeling yourself and have become less active, maybe eating a bit more comfort foods? Although morphea may be a localized form of scleroderma, not affecting internal organs, it's still scleroderma and nothing to be sniffed at and methotrexate is nothing to be sniffed at either. Did you know that 25% of people with morphea also have non skin related symptoms such as osteoarticular, neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. In addition less than 4% of people with morphea have more than two non skin related symptoms. Let me just stress that this does not mean the morphea is becoming systemic, localized and systemic scleroderma are different diseases and it's possible, although, rare to have both. As it happens I have diffuse systemic scleroderma and unfortunately morphea and bullous morphea which is a blistering disease. Nice! Anyways, as Jo has said UVA-1 Phototherapy is now the first recommended treatment for morphea so perhaps you could try this instead? Have a look at Medscape.net for a list of side effects. Take care and keep posting.
  22. Amanda Thorpe

    I am thinking this is En Coup De Sabre...

    Hello Athora I have no medical training either but if that's ageing I'm a monkeys aunt! That said I don't know if it is en coupe de sabre but as already said it's hard to say what else it could be. If it's scleroderma it needs an appointment all of its own sooner rather than later. Taking weekly photos is such a good idea as is taking in information about en coupe with you to your appointment. Maybe pick a doctor open to suggestions and start with "is this..." Please let us know how you get on and keep posting. Take care.
  23. Amanda Thorpe

    Amanda Thorpe's Blog: Adjustable Horizons.

    As you were half the inspiration...right back at ya Kathy! Take care.
  24. Amanda Thorpe

    About "The Nurse and the Cannula"

    Kathy I can't believe that...wait a minute yes I can!:-);-):-D:-(:'(:O I have put all the emoticons in as I can't tell what they are on my phone. I'm going for the laughing/astounded/smirking ones. Shelley thank you and I totally agree, as you say, at the time it may be horrendous, but when the dust settles... Take care.
  25. Amanda Thorpe

    Adjustable Horizons

    This blog has been inspired by KathyD and ShelleyE, in particular their respective comments about "changing expectations in line with ability" or "to simplify", I refer to it as "adjusting your horizons". What are we all talking about? Whether adjusting, changing or simplifying it's all the same thing, coming to terms with our illness so we can live successfully with it. This is always a hot topic on our forums because it's something we all have to do.That we live with scleroderma is not a choice, how we live with it is and remember it's not just ourselves but also those around us. When our lives were transformed by the life coach from Hades, it also reached its cold, clammy tentacles out to our beloved. Now we may be think it impossible to live well when we're in pain, fatigued, debilitated, lost mobility, independence, perhaps a loss of material circumstances but based on my own experience and that of many others it is actually possible. I have said a number of times before that life looks nothing like we thought it would but that's not necessarily a bad thing and this realisation is a good place to start from. If we are not prepared to let go of the hankering after our previously lives, to let go of grieving their loss, we're never going to get off the starting blocks. Now here's the thing, grief has to be respected, even when we move on there will still be times of reflection and unless we grieve we'll only achieve a false start. We have to hanker...we have to grieve...we have to move on! Whether we "change expectations in line with ability" or "simplify" or "adjust horizons" we find our own way of living with scleroderma. Judging from the people I have met and the people I have encountered on the forums, we are managing to forge lives of quality, filled with much love and keen humour, still acutely honest about our predicament but determined to enjoy. Living our lives like this actually benefits us and of course those around us who, by association, have also been affected by scleroderma.