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Amanda Thorpe

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Everything posted by Amanda Thorpe

  1. Amanda Thorpe

    Dried out throat

    Hello Debbie Nothing is off limits to scleroderma! It amazes me how much damage it can cause, whether slowly or quickly, inside or out, it beavers away, ever busy. I didn't know about chest infections but I guess it makes sense, nothing to lubricate and protect maybe? Look at the damage loss of moisture can do to the mouth! Since suffering with dry mouth it took just 6 months between visits to almost lose a tooth (the jury is still out) whereas previously I went 10 years between visits and had NO fillings as a result. You have my sympathy and in raising this, someone else might realise what's happening to them. Thank you for sharing this and take care.
  2. Amanda Thorpe

    Help for Raynaud's.

    It is important to remember that Raynaud's with scleroderma can be a dangerous combo, the interrupted blood flow and scarring not only causes wounds, it slows and even prevents healing. As it happens, infection doesn't even need Raynaud's to cause us major problem just the scleroderma which is why I had cellulitis 3 times in 5 months and became so ill I nearly lost a hand and then me! Auto amputating is famously, excruciating painful and happens because surgical amputation is not possible as the subsequent wound won't heal. It's not an alternative to surgery but the last resort because of poor blood flow. If you are considering self management of any wound, have a read of the personal stories about living with gangrene and amputation, which infection can lead to. One word repeats over and over again and that's PAIN. The pain associated with infections, gangrene, amputations ranges from excruciating to people being driven to the brink of suicide. Self management is great when it works but the risk if it doesn't is as extreme as it gets and of course it only has to get out of control once. I have had foot ulcers for 4 years and I mean the same ulcer as in it never heals, just gets bigger/smaller/bigger and during that time they have been infected a few times and let me say infection means pain, I don't actually know why but I know for sure it does! Needless to say I have the nurses it quick sharp or see the doctor asap. Clearly it's your choice what you do but the ISN party line is, please get medical advice for any infection and remember that Raynaud's in scleroderma can be severe. Take care.
  3. Amanda Thorpe

    Help for Raynaud's.

    Hello Sandy Welcome to the forums, you have had a lot going on and seem to be managing your disease and I think you had a digital sympathectomy to improve blood flow. It is always encouraging to meet someone who has been living with Raynaud's and scleroderma for so long, expecially for anyone coming here for the first time, newly diagnosed, thinking it's all over. We know it's not! Take care.
  4. Amanda Thorpe

    Just got done with seeing my Sclero specialist

    Hello Greypilgrim Over the years I have had about 3 or 4 tries at taking methotrexate and it never worked for me. First time round it initially made me tired and sick but then after a few weeks this settled down and all was well until about 10 months in when the headaches started so the methotrexate was stopped. I had another go at a lower dose as I had got up to 15mg but it was no good. Most recently I have just tried it for 4 weeks and again ditched it. I was on 7.5mg and took it on a Tuesday to then spend all Wednesday asleep, then the headaches. My husband was keen for me to come off of it as I was so tired and dopey, I was anxious to come off of it too! Quality, quality, quality and you don't have that if you're medicated out of existence. Bear in mind that you can have methotrexate by injection, you administer it yourself injecting it subcutaneously, if nausea is a real problem and also bear in mind that side effects can wear off after a few weeks as well as take a few weeks to appear. I hope it works well for you but make sure you have your blood tests! Take care.
  5. Hello Troy I used to suffer with migraines and unless you have had one, or a married to someone with them, you have no real understanding of how painful, debilitating and downright awful they are. They have to be fully investigated to see what can be done because, as Shelley has said, there are possibilities to improve them. Scleroderma can wreak havoc with parts of the body we don't think about like the CNS (central nervous system). We tend to think of it in terms of fibrosis on the lungs or heart or skin but it can do so much more. I've never hear of caffeine pills for migraine but I guess it's the same principle as it being added to over the counter pain killers. I have to say if I still had them I would take anything and everything to be rid of them but please remember that caffeine is bad for Raynaud's and remember that in people with scleroderma, Raynaud's can lead to blood vessel damage. Take care.
  6. Amanda Thorpe

    Hello Again

    Hello Jean Welcome back! What kinda wheelchair have you got? Aren't they fab, whatever type, because the give us back a sort of mobility. Did you resist getting one of just go with the flow? Looking back I was totally deluded when I chose my first one thinking I'd need it for maybe a year, 6 later I have a powered chair for downstairs and outside, self propelled for the much smaller upstairs and now a stair lift. The one bought for "just a year" takes me from foot of stairs to car door, I can't even walk that distance anymore. At the risk of being booed and hissed at, I am looking forward to the colder weather, I get too hot you see...sorry! Take care.
  7. Amanda Thorpe

    Question about AP (Antibiotic Protocol)

    Hello Greypilgrim I recently met a woman, newly diagnosed, who had been researching all over the internet and also hit on the antibiotic cure claim. I explained to her, as Jo has you, that it has been debunked. Minocycline can cause disfiguring discolouration of the skin, as in bluish areas, even after short use and they DO NOT go once use stops. People have had to resort to laser treatment to reduce the appearance of the discolouration. Although we fully support investigating scleroderma we don't support surfing the web for the information for this reason, debunked information is everywhere except here. I am glad that, having found the information, you came here to check it out. Take care.
  8. Amanda Thorpe

    New to this disease..

    Hello Quiltfairy One of the hardest things about scleroderma is living with it! It can be so unpredictable and the only things you can predict are that you will be fatigued beyond belief. One day good, one day bad, one day good one week bad, one month a write off! I would like to be able to say it follows a set pattern, it doesn't apart from it being guaranteed that overdoing it will floor you. Without exception. Take care.
  9. Amanda Thorpe

    Hand Vein Pain?

    Hello Paul Welcome to the forums and I hope you find some answer, it's so frustrating when we don't know what's causing our symptoms. Of course if we knew the cause we could then look at the treatment, if not cure. Take care.
  10. Amanda Thorpe

    Hand Vein Pain?

    Hello Jess I wonder if burning pain, especially in my feet, is because of Raynaud's even though I have to mildly with no colour changes. I have a friend who has cried because of a Raynaud's attack being so painful. I need to be more mindful of when it happens, I also get it in my legs but that can't be Raynaud's surely? It's not erythromelalgia either, had that and it brings heat with it as in you could fry an egg from the heat coming off my legs! So many things happen to us that we might as well blindfold ourselves and pin the tail on any symptom/cause! Take care.
  11. Amanda Thorpe

    Help for Raynaud's.

    Hello Greypilgrim Now I bet you think I'm over the top and prior to 2013, I would have too but I now know we cannot underestimate the damage infection, coupled with poor blood flow and scleroderma can cause us. I have had cellulitis 3 times from January to May 2013 and was hospitalised twice. Apart from the first time (clearly infected, swollen hand), you couldn't tell from looking at the wound that I had cellulitis, sure it was a bit red but... Cellulitis is when the deeper layers of the skin and underlying tissue become infected, unless you have the obvious external symptom how would you know these deeper layers are infected? You wouldn't until YOU became ill. My telltale marker of cellulitis is a sudden, high temperature, I can become confused (I don't realise at the time) and I hear things. My last episode of cellulitis lead to IV antibiotics again, which lead to dehydration which lead to an acute kidney injury, add in clinical neglect and I almost died. Prior to 2013 I thought all this talk of how people with scleroderma have to be hyper vigilant about things such as infections was an over reaction. I now know it's not and I also know thinking we can successfully manage these things ourselves can backfire spectacularly. We might get away with it once... Infection can lead to cellulitis and I wouldn't wish that pain on anyone! Let's not forget gangrene and amputation! Take care of yourself...and I won't say another word!
  12. Amanda Thorpe

    Help for Raynaud's.

    Hello Sweet May I ask if your attacks have worsened over time? Take care.
  13. Amanda Thorpe

    Another Negative Test Scores Story

    Muse, you hit the nail on the head, you can't give up until you get answers, as suggested by our difficult diagnosis resources this can actually take years. Years, as in 6 for women and 3 for men. I have long since given up on expecting how I feel to be reflected in my blood tests, even when my life expectancy was 2 years from serious heart failure, they couldn't cooperate and line up. People have come onto the forums to share their symptoms, confused by a lack of diagnosis, their symptoms, blatantly scleroderma (as in I, a non medical layperson think they are), fail to achieve diagnosis just because the person has negative blood work.The blood work issue is one reason why it's so important people are treated by a scleroderma expert as they are well aware of this issue. Take care.
  14. Amanda Thorpe

    1st time seeing a gastroenterologist tomorrow. Help please

    Hello Greypilgrim My first question would do I need an endoscopy to see exactly what is happening? What medication can I have to manage my symptoms and what are the side effects long term so I can make an informed choice? What can I do to help manage my symptoms including probiotics? If the answers are hoaky or dismissive, how many MCTD/scleroderma patients do they have, can I see someone else? I have to say I would initially home in on the symptoms because you only have a certain amount of time and attention. Take care.
  15. Amanda Thorpe

    Help for Raynaud's.

    Hello Greypilgrim Warning, you may think this alarmist but after 7 years I sure don't... Kathy D is totally correct, get to a doctor NOW, if needs be your ER. Every incidence of Raynaud's should be treated as an emergency because if it doesn't stop you can end up in hospital. All the more if you have pus because it means infection and as you have already identified poor blood flow will only make it all the worse. Infection can led to gangrene which can lead to amputation, all of which guarantee pain and a lot of it. DO NOT try to manage this at home alone, you may be successful but if you are not you stand to loose part of your finger in worst case scenario. Look at Kathy Baker's slideshow, all of which started because of an infection under her fingernail and ended in amputation of the finger bit by bit, sorry but there it is. She says "In November 2006, my right index finger became infected underneath the fingernail. It became so painful I ended up at the emergency room where they removed the nail and gave me antibiotics. This didn't work. I went to my doctor who referred me to an ortho doctor who first sliced the side of my finger and packed it to see if any infection would drain. This didn't work. I went back a week later and was given more antibiotics. This didn't work...Two weeks later I was back in surgery where he amputated the entire index finger in June of 2007." Over 7 months Kathy lost her finger very painfully and slowly because of something as seeming minor as an infected fingernail. Last year I had cellulitis in my right hand, not exactly sure how but spent 10 long, pain filled days in hospital, the visit began with the possibility of losing my hand. Soon I go into hospital to have both big toenails removed because they became infected and died and I still don't know why as my blood flow is actually good! After 7 years I know that whatever it is our having scleroderma and Raynaud's will make it much worse and harder to treat for sure! Take care.
  16. Amanda Thorpe

    Question about antibodies

    Hello Greypilgrim Well, have a look at Medscape which explains that the sensitivities for Anti-RNP is 95-100% for MCTD and 20-30% for scleroderma. As already said I am negative for ANA & SCL-70 but have diffuse scleroderma so I know that's possible and it's also possible to have any connective tissue disease without the corresponding antibodies. I guess someone could therefore have scleroderma despite negative ANA & SCL-70 but positive Anti-RNP but of course I have no idea whether you do, just that it must be possible. Yes antibodies can change over time and yes you can have more than one antibody. I am not sure if I mentioned this recently but from a treatment perspective it matters not what connective tissue disease you have because there is no treatment specific for scleroderma rather they are all treated the same, immunosuppressants, DMARD's, symptom lead treatment. Have a read of our difficult diagnosis page, especially the segment "They feed all dogs dog food." I hope this helps and take care.
  17. Amanda Thorpe

    Another Negative Test Scores Story

    Hello Muse There's a lot of this going around at the moment... I feel confident that Johns Hopkins will sort out your diagnosis despite the lack of blood work suggestive of anything much. A bit like mine really, I have negative ANA & SCL-70, normal rheumatoid factor, in fact I have been hard pressed to have any abnormality in 7 years despite having diffuse scleroderma with heart involvement. Oh, well! Please see our videos diagnosis of scleroderma, difficult diagnosis in scleroderma and symptoms of scleroderma. Diagnosis is made on the basis of medical history and physical exam with blood tests being used to support diagnosis or lack of, as well as helping to categorise the type of scleroderma. Biopsy can also help confirm the diagnosis and type of scleroderma. This disease is so complex and varied, frequently refusing to fit in any box which means there's no clear cut test for diagnosing the disease and putting those of us with it outta our diagnostic misery! Take care.
  18. Amanda Thorpe

    Brand new to this. Diagnosed with MCTD, need help

    Hello Greypilgrim Best wait until you see your rheumatologist in 2 weeks but the good thing is you are already educating yourself so you can make informed decisions with them. My disease (diffuse scleroderma) was sudden and rapid, consequently I was put on mycophenolate 2 months after diagnosis even though I had NO internal organ involvement. They were wanting to prevent more symptoms arising as well as treating my biggest symptom, skin involvement. Interestingly it did help my skin involvement but I went on to develop internal organ involvement anyway. Mind you I was only on Mycophenolate for about 10 months then used it sporadically then stopped it because of debilitating headaches, an unfortunate side effect. I took plaquenil (hydroxychloroquine) for I think 3-4 months and noticed a reduction in pain and fatigue, about 20-30%, unfortunately I had stomach pain ranging from moderate to severe so had to ditch it also. I tried it again recently, lower, slower dose etc but same side affect again. Everyone reacts differently to all of these drugs so you will just have to try them I'm afraid. At least there are immunosuppressants, DMARD'S (disease modifying antirheumatic drugs) and other symptom specific medication to choose from. Although MCTD can't be cured it can certainly be treated. Take care.
  19. Amanda Thorpe

    Help for Raynaud's.

    Hello Greypilgrim Well, I was going to signpost you to our videos but Jo already has! Although my Raynaud's isn't bad I know that some people find it crippling, even with one finger it can be a problem. I suspect you have found or will find ways of coping and hopefully others will share their tips, it's that time of year after all. Keep core body temperature up as the body diverts blood from the extremities to the brain and internal organs when it gets cold so just keeping hands warm is never going to be enough. Take care.
  20. Amanda Thorpe

    10 Years

    Hello Lisa How lovely that you've come back! As I haven't actually met you yet "Hello and how are you?" I was just saying the other day how the forums change, people come and people go, some return and some never leave ! Take care.
  21. Amanda Thorpe

    Gareth update

    Hello Margaret I am so glad to hear that Gareth soldiers on despite challenges many of us would buckle under. Stubborn is he? I hope the rest of the year is medically mild and trouble free. You GO! Gareth! :terrific: :woohoo: Take care.
  22. Hello Judy Welcome and I also come from a family of people with autoimmune disease, unfortunately I am also the one with scleroderma, even though my blood test results are negative for ANA & SCL-70, rheumatoid factor normal. Really? Yes, even after 7 years including myocardial fibrosis and heart failure. My diagnosis was totally symptom lead, even though I only had one at that time...the mother of all symptoms...skin involvement...as in 60% of my body covered by tight, hard skin. I walked like Frankenstein's bride I was so stiff and unbending, almost every joint was restricted. Dry mouth and GERD can be symptoms of scleroderma, but can also be found in the general population so I would suggest you wait until you see the expert and take there word on whether you have it or not. Positive blood work doesn't mean you have scleroderma or anything for that matter. Take care.
  23. Amanda Thorpe

    Brand new to this. Diagnosed with MCTD, need help

    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.
  24. Amanda Thorpe

    scl 70 and kidney disease

    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.
  25. 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.