Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Hello Greypilgrim Welcome to the forums and be reassured that I am typing this post with sclerodactyly (my hands are in said video) so even if you did get it, you manage. I have seen some people with hands way worse than mine and they manage, sometimes with help or adaptations. One lady with fingers completely curled in, used a stick to put her contact lenses in with because that can't really be done by someone else! I had pins and needles, numbness and swelling in my hands in the beginning of my symptom manifestation. My hands were totally straight as tight skin (approx 60% of me) meant my fingers, hands and wrists did not bend at all. My elbow didn't straighten either so it was really hard to use my hands, it was like having a plank of wood from elbow down. My fingers then began to curl quite quickly, amazingly so despite attempts at physio, splints and frequent wax bath treatments. It is actually easier to use my hands now than when they were completely straight with no bend anywhere. I have no idea whether you will progress to sclerodactyly, meany people have hand swelling but not many sclerodactyly. I was on mycophenolate in the beginning and I am convinced it's why I had so much skin softening. I came off of it because of side affects and went onto methotrexate. Once I stopped the mycophenolate I did an on/off thing for awhile then started methotrexate until side affects then did the on/off thing eventually giving up on them all together. I had no rush of symptoms afterwards, if your disease is raging away and you start mycophenolate and this stops then it's working for you, obviously if you stop the drug the disease will rage away again because it's not being suppressed. If you don't get on with a particular immunosuppressant, there are others. There's no getting away from the scary bit I'm afraid, we all go through it because suddenly the control and choice we thought we had for our lives is suddenly gone. Really, it was only ever an illusion but, boy, weren't it pretty? Take care and keep posting.
  2. Hello Chelsaroo Welcome and Shelley's already mentioned a very important point, diagnosis of scleroderma should be symptom lead. I hope that you don't have scleroderma with all you have going on already, unless if will allow you to pigeonhole an existing symptom. Please let us know what your rheumatologist says. Take care.
  3. Hello Kathy You make a very relevant point, they feed all dogs dog food. Say what? Some doctors see no advantage in labelling with scleroderma because the same medications are used to treat all connective tissue diseases such as MCTD, UCTD and scleroderma. Take care.
  4. Did you know, I spent my early years wanting doctors, consultants, nurses etc to like me? Even though I was grappling with scleroderma and the havoc it was wreaking I wanted to be liked by all these new people I was spending time with, especially if I was hospitalised. Guess what, this was a totally normal and common expectation but it was completely unnecessary, even counter productive. Let me be clear, I am not suggesting that we be rude or obnoxious in any way, that's totally self defeating, just that we recognise that interaction with our medical team is not a social encounter for either side. As nice as it is to feel all warm and fuzzy about those providing our care it's not a priority, yes, we need to be able to connect with the person but only so far as it enables us to communicate freely with them. If we're behaving reasonably, their feelings are not our concern and provided the level of care is what it should be, neither is whether they like us or not. On the whole I have had excellent care at the hands of professionals well able to manage egos and personalities, including their own but law of averages says someone, somewhere didn't like me but apart from anyone involved in a complaint, I am oblivious as to who this would be, just as I should be. Whether seeking diagnosis or living it out, every now and then you're going to encounter someone who is either not on the ball, has a bad attitude or that you just disagree with and in this situation their feelings are not your priority, you are.
  5. Hello Kermodi Welcome and let me say straight off that I can't give you a yes or no to all of your questions, I can say that there is no recognised autoantibody specific to rheumatoid arthritis. SCL-70 is only indicative of systemic scleroderma, specifically diffuse but ANA suggests a number of autoimmune diseases. Currently RF (rheumatoid factor) is the only real blood marker for RA (rheumatoid arthritis) but it's not a certainty. Here's the problem with all the antibodies and so forth, they can only suggest a disease and their role in the diagnostic process should be to help confirm and categorise the disease. A diagnosis should be made using physical examination and clinical symptoms with blood work supporting the diagnosis or lack of but sometimes they can't even do that. I have diffuse systemic scleroderma and throughout 7 long years my ANA, SCL-70 have always been negative, my rheumatoid factor negative, even my inflammatory markers are usually within normal ranges. If you put my blood work in front of a doctor not only would they say I did not have scleroderma but that I was perfectly healthy. Really? I have a bi ventricular ICD in situ thanks to scleroderma, don't give me healthy! Anyways the reverse is true, you can have bloodwork positive for scleroderma and never develop the disease.itself or even ever have a symptom. So, I have no idea whether you have scleroderma or not and to muddy the waters even further, although scleroderma is not considered to be hereditary (apart from a specific type FPSS) autoimmune disease do seem to run in families. I know my ancestors had them (thanks!) as in Ma and Grandma but my identical twin doesn't? Go figure! Finally it's my understanding that many a blood test turns up a false positive result, at least it's certainly been an issue for our friends in the US so I guess that must apply to us as well. I am sorry but until you see your rheumatologist you won't know much of anything for sure. What I can say for sure is that should you go on to have scleroderma it is not the end of the world, just the world as you know it but then that's true of RA or any chronic, debilitating illness. Different doesn't mean bad and can actually mean better but you have to want to make it so. Take care and keep posting. PS I forgot to say there is no joint pain specific to scleroderma, although common, I didn't have any until about year 5.
  6. Hello Ranchosteve Welcome to the forums although I am sorry you have had to live with en coupe de sabre for so long. It would be great to have photos in our gallery of before and after fat grafting and I certainly hope it's a successful procedure for you. Take care and keep posting.
  7. Well, funeral spells out"real fun" and that's what I want people to have. I might make a video clip, with many acts and costume changes. Got to take my last opportunity to look better than everyone else! Well, who's going to talk ill of the dead? Take care.
  8. Miocean, it's our pleasure. You can do two things with scleroderma, complain about your lot in life, or get on and live! You got on and lived! I am sure that you'll be here celebrating with all of us for years to come, at least I hope so. Take care.
  9. Hello Steve It seems that you and your wife have a good attitude towards scleroderma and everything it brings with it. It's absolutely vital, that and that you're putting up a united front. I have to say that my husband makes this whole experience bearable, even enjoyable. Take care.
  10. Hello Steve Unfortunately there are all sorts of issues to negotiate and at the worst time in a person's life. It can be disability issues, insurance issues, and every other issue under the sun. I'm so glad things are working out for you both. Take care.
  11. We are all going to die, some quicker than others, so why do we make like it's something that happens to other people? As per your topic title, Kathy, we've all had to consider our mortality in ways we would not have before. Death is not abstract but a certain part of an uncertain future and as we don't have the luxury of just assuming we'll be old when the time comes we have to consider this subject in some detail. Hubby and I are doing are wills now, as is Ma who has terminal heart failure. Once done the relief will be immense because it's the thought of the job undone and the chaos this causes that makes me wild. Why me...why not you?! Good point Jo and sorry about your friends. Shelley, I bet coffin shoppin' with you is the best, riotous for sure! Did you ask to try them on for size? When I was first diagnosed, even before heart failure etc, me and hubby couldn't watch or listen to anything remotely emotional without tearing up. There was a particular cancer charity TV commercial which showed an older man getting ready to go out the door,and his wife is reminding him to take his hat, his gloves and so forth, it being cold and she wanting to take care of him. He is pretending he's doing just fine thank you but he is actually enjoying her attention. We then see that the wife is a memory, she's dead and he is alone, with just the memory of her fussing over him. Oh, my giddy aunt did we cry, I mean are you kidding me? Anyways. this is all very healthy and accepting, thanks Kathy and what was the film? Take care.
  12. Hello Nina In 2003 a large study found that 25% of people with localised scleroderma also had at least one symptom outside of skin involvement and less than 4% of the people with morphea had more than two non cutaneous (non skin) symptoms. Symptoms experienced : Osteoarticular, affecting bones and joints Neurological causing epilepsy, headache, peripheral neuropathy Vascular Gastrointestinal causing heartburn Respiratory Cardiac Renal As these symptoms can all be caused by systemic scleroderma it's important to point out that the follow up of the study found that no one in it had developed systemic scleroderma. Although it is possible to have both systemic and localised scleroderma, as I do, they are two separate types of the disease. Please bear in mind that any blood test results should only be used to support or rule out a diagnosis, they should not be the basis of either decision. It is possible to have scleroderma and negative blood test results, as I do, and it's also possible to have positive blood test results but no symptoms. Over the years we have had many a visitor in exactly that predicament, an antibody test, somewhat random given the lack of symptoms, has tested positive for scleroderma meanwhile the lack of symptoms continues. As good as that is, the person is left with the constant wonder and accompanying worry, would tomorrow be the day they wake up in bed with scleroderma? Take care.
  13. Hello Jeannie Long time no everything! I was so encouraged to read that you think of scleroderma as a gift but not so encouraged to read that your illness is progressing. How long have you had scleroderma now? Where's your plateau, same place as mine maybe? It's always such a thrill to hear from you. Take care.
  14. CONGRATS BUTTONS! Being Grandma is so very different and so very wonderful! You're never wrong or in the wrong! Take care. :terrific: :terrific:
  15. Hello Jena I did wonder if the methotrexate was the cause, it can cause stomach problems affecting the lining of the stomach and intestines, even in injection format. However I also know steroids can cause stomach problems as well. I was going to suggest a stronger PPI like lansoprazole, esomeprazole but it might not be appropriate. What I forgot all about is the interaction between methotrexate and proton pump inhibitors (PPI) of which omeprazole is one. PPI's can decrease the kidneys' ability to remove methotrexate from the body thereby increasing the amount of methotrexate in the body. See WebMD for clarification. I seem to remember reading something about taking these medications separately but don't quote me. Having just started methotrexate again myself I am going to look into this as I also take a PPI. You might want to discuss with your daughter's doctors. Take care and keep posting.
  16. Hello Crankygoat Firstly, what I am going to say is not in anyway meant to be negative, rather realistic and I am still not convinced about plateaus. Nevertheless, I have never heard of a plateau after 12-18 months, the doctor was kidding right? When I last discussed this with my recognised European scleroderma expert, he said that after 3-5 years people's symptoms can stop progressing, otherwise known as a plateau, but there is no guarantee that symptoms, once stopped will stay so. At that point when progression stops, some people improve, some people stay stuck as they are, I am one of the latter, I think! Here's the thing, despite a supposed plateau, I can do less than this time last year, less than this time 6 months ago. It's getting harder to find outdoor footwear I can tolerate and more often than not I go out in slipper boots. My ankles are fixed because of tight skin, unfortunately my right foot didn't "fix" straight but rather turns inward and this turning in has become more pronounced with the passing of time. You see, although my scleroderma might not be progressing, the damage it has done to my body continues and that continuation takes its toll. I am realistic about my disease and the restrictions it places upon me and even the impact it has on my husband but I am not defeated or defeatist, neither is he. It is important to be realistic but it doesn't stand to reason that this means being negative, I would not have bought a wheelchair if I had not accepted my inability to walk and I would not have my powered wheelchair but for firstly buying a manual one. I wouldn't be awaiting a stair lift if I had not accepted my inability to use the stairs. Okay, it may have taken me a real, long time to accept the piggin' obvious but hey! I am sorry your wife is now on disability and that her disease is moving so quickly. I hope your wife can do whatever she can for as long as she can and whatever damage scleroderma does might improve when she plateaus and that it might be an early one. Glad you found the videos helpful. Take care.
  17. Hello Sharon As it happens localised scleroderma can cause symptoms outside of just skin involvement, in 2003 a large multinational study found that 25% of people with localised scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up. If you have morphea, it can burn itself out, even without treatment, within 3 to 5 years but of course the fact that it can doesn't mean it will. I have morphea and bullous morphea and 7 years on it's going nowhere but then I also have systemic so maybe that's keeping it going. Who knows with this disease! The best thing is to be treated by a scleroderma expert so you can be sure of your diagnosis and treatment. Take care and keep posting.
  18. Hello Naina Welcome and I am glad you have found this site helpful, that's our aim! I can't help but think that you could probably give a tip or two about how to live successfully with scleroderma, having done so for so long yourself. We have lots of videos you might find interesting, as well as our blogs, written by people with scleroderma and the carers of. I can certainly say that being involved with others who have and therefore know this disease is live changing, for the better. Keeping in contact with people is important as is having a routine, whatever it may be. A sense of humour is vital, you need to be able to laugh, especially at yourself, if you're going to survive with yourself intact. Take care and keep posting.
  19. Hello Mike Welcome to the forums. I had never heard of NSIP, (nonspecific interstitial pneumonia), per the Scleroderma Society: "In systemic sclerosis the most frequently occurring pattern of fibrosis is one called non-specific interstitial pneumonia (abbreviated as NSIP)." Stem cell transplants have been discussed on this site and forums many times before, some successful, some not so much and some fatal. Have a look at the discussions about stem cell transplants on the forums, people's experiences in our personal stories, and or course our medical pages. One thing we always do here at ISN is to recommend that anyone with scleroderma be under the care of a scleroderma expert and if you look under the STCS and EUSTAR links you'll find those in Canada. I know and have known many people with scleroderma, including a lady who lived 30 years with a lung function of 50% and, as far as I know, is still alive. Scleroderma has taught me that anything is possible, both good and bad and I hope that for you it's all possible for the good. Take care.
  20. Hello Bonnie1986 Welcome to the forums! I have both systemic scleroderma and localised, being morphea and bullous morphea. As you already know, morphea is a localized type of scleroderma that does not affect the internal organs and is never life threatening. A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up. Morphea can burn itself out after 3 to 5 years, even without treatment. There are various treatments for morphea although the current, recommended, first line treatment is UVA1 Phototherapy. Scleroderma doesn't like to conform so it's possible to have an entirely different experience of it than most people, it can wax and wane so on that basis could flare anytime. With regards to blood tests and scleroderma, their purpose should be to help the doctor to diagnose scleroderma or rule it out, they should not be the basis of a diagnosis. It's possible to have scleroderma and negative blood work (like myself) and it's possible to have positive blood work and no symptoms whatsoever. Jo has given you the link to scleroderma experts and I would suggest you pick out the ones that deal with morphea and give them a visit. Scleroderma is a complex disease and as such needs to be managed by an expert who knows what to expect, how to treat and so forth and so on. Take care and keep posting.
  21. Hello Rebekah Welcome and sorry you have morphea in such a place. I have it all over my thighs, back, upper arms, oh, and butt. I also have systemic scleroderma. Scleroderma can wax and wane and although it is supposed to follow some sort of pattern, doesn't necessarily. When I saw my scleroderma expert recently, he saw my disease hadn't read the book, neither has yours! Reality is that scleroderma can do anything it likes and frequently does. Jo has given you treatment details and I can't add more. Take care and keep posting.
  22. Hello ScarySarah Glad you liked the fatigue video, my favourite part is "say no!". We have to give ourselves permission to do what we need to do in order to live successfully with scleroderma. Take care and keep posting.
  23. Hello Quiltfairy I saw my expert, Prof Denton, Royal Free London, this week. He talked about how my disease did not follow any of the usual patterns of scleroderma (there are a few), that my disease had not read the book! My disease did not start with Raynaud's or my hands, a couple of the usual patterns, it started on my shin. I hate to imagine what would have happened to me with a run of the mill rheumatologist with no dots to connect! Interestingly, at the Free they have hived off the scleroderma patients to their own clinic under Immunology, with a phlebotomist on site at last! This confirms that scleroderma is not a typical rheumatic disease for run of the mill rheumatologists...we're special...really, really special! Oh, for ordinary! Take care.
  24. Hello Morritz Welcome and when it comes to collagen fillers, caution is required. Per this site: "Patients with certain connective tissue diseases may have an increased risk of severe allergic reactions to collagen injections...Thus, collagen injections should be used with caution in people who have had these diseases. Some experts recommend that people who have had these diseases should either not be given collagen injections at all or should be given multiple skin tests before treatment..." Have a read of the links Jo has given you and make sure you speak to your doctor(s) also. Take care.
  25. Hello Tmoneypen Welcome and we're poised to try and help but we need a bit more information as already asked by Jo. Look forward to hearing more and take care.