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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Pregabalin (and maybe generics)

    That's great Dimarzio! When we find something that works we should really take that victory. Once upon a time, I was taking a massive dose of pregabalin but after I cut down another medication, I realised that pregabalin was exacerbating neuropathy. One of its side effects is actually neuropathy, ironic given that's what it's often prescribed for and that's why I take it. If I stick to a low dose I'm fine but if I increase it...woe betide me! Like Jo said, what works for one doesn't work for another but then we're all so marvellously different, aren't we? Alas, if you were all like me...your lives would suck and the world would end. I took an online personality test today, just for fun you understand and one question asked whether I'd rather live in a world with no problems or rule the world. Hmm, yeah I pondered and pondered and pondered! Take care
  2. Hey there MAT54 Welcome and you can't post too much but you can ask questions we can't answer, don't worry, though, when that happens we ratchet up the support. I have found the approach to bloodwork very different here in the UK to that in the US and ultimately it's not the most important issue. I'm a patient at the Royal Free, under Prof Denton's team and they're the experts for sure but my ANA SCL-70 status has never been discussed and they have been the only hospital to test my antibodies. I only know what it is because I have asked. I was diagnosed in 2007, my ANA only became positive around 2014/15 but my SCL-70 has always been negative. Always. I was diagnosed August 2007 with scleroderma and when I saw Prof Denton that September my diagnosis was confirmed as atypical diffuse cutaneous systemic sclerosis (diffuse systemic scleroderma) with my nailfold capillaroscopy showing that I also had Raynaud's. I know that antibodies can point you in the direction of potential symptoms and can clarify what type of connective tissue disease you may have but unless you proactively treat a symptom (do they even do that) there's not much more that you can currently do. You are already suppressing the immune system with the mycophenolate and as symptoms arise, they'll be treated too. I do understand why people want to know about antibodies just bear in mind that the information doesn't always hold any keys. I was told, by the Royal Free that my negative ANA and SCL-70 meant that I was unlikely to ever develop internal organ involvement. Imagine my shock at being in serious heart failure 3 years later having developed myocardial fibrosis! I hope this is of help and interest and take care.
  3. Rheumatologist Answers.

    Hey there Dimarzio After I read I had to comment, yeah I totally have to get in on this! Just a suggestion but have you thought that maybe your wife is scared witless at the thought of you being seriously ill? Fear makes us angry and when she exploded at the prospect of reading in detail what your lives could look like if you were, fear of loss may have been fuelling her anger. She seems in real denial and we've all been there. Who discovers one morning that they can't straighten their elbows, shows their husband and then both goes to work... me and my husband who were both in la la land! As for other relatives, read my blog Crash to see how mine behaved. Sadly but ain't it always the way, my sister and I only started talking again this January because my nephew died. Hope this helps and that you've found another doctor. Take care.
  4. Hello Mando I had LVBBB too...do I still have one...I dunno! Anyways, you're right it can be caused by connective tissue issues. I began with LVBBB in 2009, at that time my ejection fraction was 50%. Come 2010 and I also had myocardial fibrosis, ejection fraction of 32%, global disfunction (both sides of the heart affected) and serious heart failure with a 2 year life expectancy. Well lookit that...it's 2017! I had a bi ventricular ICD implanted and here I am today. I did the heart monitor and it was a waste of time for me, the right & left heart catheterisation and heart MRI were the diagnostic tests that did the trick, having a said that things had gone way beyond the LVBBB. If you're being investigated they will hopefully find the problem quickly and be able to treat it quickly. I know that when the heart is affected it can be quite daunting. Take care.
  5. Scleroderma - looking for support.

    Hello Simon I hope that you continue to improve and you certainly seem to have a good attitude to your situation. Take care and keep posting.
  6. Scleroderma - looking for support.

    Hello Stace38 Welcome to the forums. I was 39 when I was diagnosed after rapidly progressing symptoms. Within 6 months I went from working to sitting on my couch, just about able to wipe my own butt and I am not saying that as an expression but as a literal statement of fact. You'll be pleased to know that I now have no problem attending to my own derriere but I can no longer work or walk. Swings and roundabouts, as they say. Anyways, Prof Denton is an immensely likable chap, very patient centered which is so important. Scleroderma is an odd disease because it affects everyone so differently even people with the same diagnosis. Keeping a positive outlook is vital as is being realistic, otherwise we inadvertently pile more frustration and disappointment onto ourselves. Once you've seen Denton you'll have a good idea where you stand. I hear ya about the pain. I really do. Take care and keep posting.
  7. Hey, there everybody with Raynaud's, which is most of you, could you please detail an attack for me? I'm interested in what it feels like, how painful is it, what is the pain like, is it a burning sensation or pins and needles etc, how long does it last and anything else relevant to how it feels. I'm not interested in what sparks it off, I know all that but what I don't know (I think) is what it feels like. If you're wondering why I'm asking, I'm trying to determine whether the pins and needles (think of the sensation being inflicted with knitting needles rather than little needles!) I am now getting in my feet is from Raynaud's. Although I have Raynaud's I have never had colour changes and for a long time cramp was the worse symptom of it. Then the foot ulcers started, nevertheless, for years I was told that the blood flow in my feet was good and that the ulcers were a result of the skin breaking down. I now know that blood flow is the cause of the ulcers (DUH!) which I would attribute to Raynaud's although I guess scleroderma could also be the culprit...hmm... Although I have only just started to feel the pins and needles it could have been there for years, a change in medication now means I feel more than before, so I can't determine how long I have actually had pins and needles in my feet. What I can tell you is it begins when I move my legs from a horizontal position (lying on the bed or sitting with them propped up, level to my hips) to a verticle-ish one (kneeling or sitting in my wheelchair). As soon as I lower my feet I can feel the pins and needles begin and of course the longer my feet are lower than my hips, the worse it gets. Lying down is the best remedy, usually taking anywhere from 10 to 30 minutes to bring relief, however, if my legs have been verticle to long, it can go on for hours. I see my rheumatologist shortly but I wanted some thoughts from you guys in the meantime so, what'd'ya think? Thanks and take care.
  8. Hey Trena, just popping in to add my experience. My ANA only because positive around 2014 but my SCL-70 has always been negative, however, I was diagnosed in 2007 with diffuse scleroderma. It's all about the symptoms and test results (ECHO, lung function) so you see blood work isn't even a secondary issue. Hope this helps and take care.
  9. My mom was just diagnosed with scleroderma.

    Hey Khohu welcome and shout out to your mum! Scleroderma is a tailor made disease, every one gets a different version of it. I have diffuse systemic scleroderma and although there are a bunch of symptoms I could have, what I do have will be very different from someone else with the same variant. My disease took 6 months to move my from my work desk to my couch and I never went back. I can't say things have got better, they've got a little bit worse every year since but I'm still here. Your mum could already have been living with scleroderma for years so she's doing well and it's entirely possible that she'll continue to do so. I sure hope she does. Take care.
  10. Positive ANA possible CREST

    Hey Bek, welcome and you're right, you are a ticking time bomb, we all are if you think about, one day we all go BOOM...GAME OVER! CREST aka limited scleroderma is generally slower in onset, slower in progression with a better outcome than the ugly sister, diffuse scleroderma. Nevertheless, you should be under the care of a scleroderma expert, however amiable your scleroderma may be now it has potential to be a wily critter which is why you should have tests (ECHO, lung function) to ensure nothing is going on and if it is, that treatment is swift. You will always live life normally, there's nothing else you can do. Even if things got worse all you do is realign your normal and live it. Take care.
  11. Hey Mando, this is the first time I have heard of cardiotoxicity from hydroxycloroquine and you're right, the articles are scarey...sudden death, biventricular cardiomyopathy...oh my! Of course it's serious, I get that. For different reasons, I had my own stomach dropping moment back in 2010 when the damage had been done by the time it was found and I was looking at 2yrs without successful treatment. Where you are now is all uncertainty and fear but you're doing what you can for yourself by ensuring your medical team is on the ball. Until the ECHO results you won't know where you stand or what your options really are. When I researched my ailment, myocardial fibrosis, one site talked treatment and another shouted it's TERMINAL! That was 6 years ago... Let us know what happens as we're all rooting for you. Take care.
  12. Cyclophosphamide

    Hey Simon, even if your function never improved you can still live. I had a friend who lived with 50% function for years! I say "had" because we lost touch. However, I've no doubt that your experience will be one of improvement that you'll be able to share with us. I missed out on cyclophasphamide because by the time the fibrosis was found I was past the inflammation stage and into the oh, dear, too late stage. Mine is myocardial fibrosis, treated with implantation of a bi ventricular ICD. The wonders of modern medicine. Take care.
  13. Prednisolone side effects?

    Hello Debs I am late to this... Prednisone is a steroid, methotrexate is a DMARD disease modifying anti rheumatic drug, what has one got to do with the other? I don't get holding off on anything to slow down the immune system and therefore the scleroderma, like a DMARD or an immunosuppressant such as mycophenolate. Maybe see a scleroderma expect? Of course I am not a doctor and I know nothing about your disease, I just don't get holding off on a disease modifyer waiting to see if a steroid works. What happens if it doesn't do you get sent home untreated? Take care and keep posting.
  14. Dear Janet was here before me, I remember reading her posts and marvelling at her struggle which she was determined to overcome. Janet never gave up and was searing honest throughout. If anyone, particularly a newbie, wants to know how to manage scleroderma successfully, they want to read her story that unfolded through her posts. Janet was so very unique and never will the gap she has left be filled. Miocean, thank you and rest easy, friend.
  15. Talk to text

    Hello Quiltfairy I want this! I have a similar thing on my smartphone which starts out great and then crashes and burns! All of a sudden "How are you doing" becomes "Have a tomato", my laptop is even worse, I don't think it understands English, it certainly doesn't speak it. I certainly do! Take care and have fun with it.
  16. Hi

    Hello Peter Oh boy, you're sure going for it! Never heard of what you have which is quite a feat. Antibiotics can be awful drugs, rather, the effects can be. In 2012 I had cellulitis 3 times in 5 months, needing IV antibiotics twice. I ended up in hospital for about 5 days with an acute kidney injury and when home, spent two weeks in bed. The first week I developed colitis and oh my giddy aunt, was that awful! When it comes to treatment my husband and I consider quality over quantity and make a decision based on that alone. Who want 10 miserable years instead of 5 mediocre ones, no one but the doctor! Hope it works out and sorry pain has joined the party. The best thing to do, I think anyways, is to accept that it's there to stay and all you can do is manage it. Sounds obvious I know but had I accepted the pain and its side effect of being unable to walk, I'd have saved myself lots of bother especially as I've ended up in a wheelchair anyways! Oh and if you need medication to help, I say take it but less is definitely more. Take care and keep us posted.
  17. Bowel incontinence

    Kamlesh, may I ask about your post? I've never heard that about the bladder losing elasticity and as someone who has had issues from another cause, I'm intrigued. Hope all is as well as it can be. Take care.
  18. Bowel incontinence

    Sorry Margaret, it's another surprise hurdle thanks to scleroderma and secretly, it's the one we all fear at some point. I hope Gareth's doctors can figure something out. Hugs a plenty to you both.
  19. Newbie who needs assistance

    Hey Robbie, I know about itching! Before diagnosis I had tight skin on my shins that itched constantly. I would sit at work with my jeans rolled up and an electric fan blowing on them. Lunch time I would trawl chemists for various creams, return to work and slather the stuff on. At night my husband would be slapping calamine lotion on my calves. Nothing helped. Now the following helps: 1)antihistamines, especially atarax (hydroxizyne) which the Royal Free recommended 2)low dose steroids, like 5mg, 3)moisturise, I use Balneum cream (contains urea and lauromacrogols) ensure you constantly moisturise, avoid anything perfumed or with alcohol in it. 4)keep the area cool 5)avoid fabric softeners 6)consider becoming an infrequent bather, at least moisture afterwards and don't use soap/shower gel but use an emollient instead 7)don't wash hair and body together because the shampoo and conditioner can irritate the skin You need to accept that you can't carry on doing everything as you once did. Also itching is common in scleroderma so your specialist will be familiar with the issue and that it's not a simple one! I hope this helps because I remember how desperate that itching made me especially as I had no diagnosis when it started. Take care.
  20. Are my symptoms common in early scleroderma?

    Hello KTerrell My apologies for not replying to the email you sent until now. There's not much I can add to what has already been said I'm afraid. Your best bet is to see a specialist as Shelley has suggested because as you know, scleroderma is so complicated and your symptoms have yet to declare for one specific disease. Almost every one here knows how difficult it is to live with symptoms, when the cause is unknown. Have a read of our pages and watch our videos about diagnosis, including the difficulty of achieving one and while you do, we are here to support you. Unfortunately we can't evaluate your symptoms or say whether or not you have scleroderma but we can do our best to say glad you're here! Take care.
  21. Hello Wilson Welcome and I get that want of an overall diagnosis of something. Needless to say no one wants a diagnosis of any disease but we all want to be able to hang our symptoms on something so we can make sense of them as well as know whether anymore could appear and if so what they might be and what they might do to the body we inhabit! For information purposes, the cause of a symptom can make a difference to treatment, progression and outcome, an example of one such symptom is pulmonary hypertension (PH). Back in 2010, I was diagnosed with myocardial fibrosis and class 3 heart failure. I started out with a left ventricular bundle branch block, which involves the electrical impulses of the heart, I had grade 3 diastolic dysfunction and eventually global dysfunction as the entire heart became affected. I received my diffuse systemic scleroderma diagnosed in 2007 and had no internal organ involvement at that time, only 3 years later I developed myocardial fibrosis and heart failure which at the time brought my life expectancy down from at least 10 years to 2. I had a *biventricular ICD fitted and within two years my **ejection fraction went from 32% to 55% which is normal. Even when things nose dived for me, treatment was possible and thankfully successful. Scleroderma is so unpredictable but there are so many treatment options now, even when things change for the worse and change quickly, it ain't over 'til it's over! Take care and keep posting. * it's a pacemaker and defibrillator in one **ejection fraction measures the function of the left side of the heart which pumps blood around the body
  22. Healing / Reversal

    Ah, yes Shelley, I love the roller coaster comparison and Kathy, what a fascinating family you have! Hmm...I guess we could also say...put your head between you knees and kiss your butt goodbye! Might be too much though, for any newbies? Take care, one and all!
  23. Hi

    Fab! So glad to hear that the medication is working! Have a look at the information we have on site about PH, there are various ways in which scleroderma can cause it. The good news is that with early diagnosis and treatment, the prognosis is good. Take care.
  24. Are my symptoms common in early scleroderma?

    Hello KTyrell How are you doing? Just read your message and wondered? Take care.
  25. Rapid Onset in four days HELP!

    Hello Sandrina The answer to your question is yes and who knows. Over the nearly 10 years I have been involved with this site I have only ever heard of one other case of onset over days. Certainty I had symptoms over weeks, as in one or two, but as I say, only one other case of daily onset have I heard of. As for progression no one can say. I also recommend seeing an expert as soon as possible. Take care.
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