Amanda Thorpe

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Posts posted by Amanda Thorpe


  1. Hello Ronald,

     

    Over the years the main cause of death in scleroderma has changed, it was from kidney involvement and is now, I believe, lung involvement. However, this is not because lung involvement has become worse or ever was worse but because survival of a renal crisis has improved. Doctors are now aware of renal crises in scleroderma, I have a friend who had a renal crisis some 20+ years ago and nearly died before they tied it to the scleroderma, today they would be more on the ball and as we know, prompt diagnosis also enables prompt treatment.

     

    Now lung involvement, including pulmonary fibrosis and pulmonary hypertension, is the most critical symptom. Well that's what it says "on paper" but of course the most critical symptom is the one that affects the individual the worst. I have a friend with complete gastric failure, the doctors pronounced her terminal but she's still alive and has even gained weight albeit through TPN (total parenteral nutrition). She was advised that gastrointestinal involvement was the biggest killer and I have also read that somewhere myself. I myself have myocardial fibrosis and had a 2 year life expectancy back in 2010 but thanks to a biventricular ICD I'm still here!

     

    I am sure that statistically something or another is more likely to kill in systemic scleroderma but then how accurate are the stats and what about individual circumstances? Firstly stats, there must be as many undiagnosed and misdiagnosed people with scleroderma as there are those diagnosed with it and I wonder what they die of and whether that would shift the focus from lung back to kidney or to the heart or remain on the lung? Of course personal circumstances are also a big player, someone with systemic scleroderma living in the US who has say moderate to severe pulmonary hypertension may well live longer than someone living in India with say complete gastric failure. Someone with pulmonary fibrosis living in the UK, diagnosed and treated immediately may well live longer that someone with kidney involvement, misdiagnosed and then given high dose steroids. It's swings and roundabouts for sure!

     

    For you the priorities are diagnosis of the systemic involvement, which you now have, then treatment which you will soon have hopefully and support which will be ongoing if you stick around...I means as in if you choose to keep posting!

     

    I am still amazed at how people buck the trend and continue to live for years when they should in fact have kicked the bucket or passed over or whatever euphemism is preferred. Remember that you have lived for nearly 30 years with this disease so you have had a good long run and it's perfectly possible that you will continue to do so! Clearly you're doing many things right!

     

    Take care. 


  2. Hello Andee

     

    I also have IC and was diagnosed with it in 2004, 3 years before the scleroderma. IC can be treated and has flares and calm periods, just get yourself a urologist used to treating it.

     

    We can't choose our circumstances but we can choose how we deal with them for sure! Shelley always has excellent suggestions about making the most of things and it certainly is possible!

     

    Take care and keep posting.


  3. Hello Jet

     

    Welcome and I am sorry that, having thus far survived cancer that you are now having to deal with lots of unwanted repercussions. Like Jo, I have no medical training, only 7 years experience living with scleroderma and that experience would suggest that you get the medical OK before exercising. I caused myself fasciitis by continuing to exercise when my scleroderma was on the rampage, who'd have thought that exercise would actually be harmful?! However, myositis (muscle disease caused by inflammation) can benefit from gentle, low impact exercise as Jo has already said.

     

    I hope that you find the support and information you need.

     

    Take care.


  4. Hello Jo

     

    You are really quite remarkable. 

     

    Margaret you are quite right! After Ma had her hip done she was so obsessed with no leg crossing that even I wasn't allowed to cross my own legs! Why?! Nevermind.

     

    Take it easy Jo and remember that you will soon be better than before...they have rebuilt you...better than before...if that's possible!

     

    Take care.


  5. Hello Ronald

     

    My foot ulcers have just recently healed, after being open for 4 years, Yep, 4 years! Unfortunately a new area has opened up on the right foot...

     

    I am in the UK and had District Nursing coming in quite frequently over the years, now down to once a month at my request. The ulcers have to be dressed and so forth and monitored by a professional. When they were infected they became more painful and well, smelly. The exudate also changed colour, more of a green hue to it, gross eh?

     

    My ulcer just closed of their own accord and resulted in the skin breaking down, not because of blood flow and everyone "gave up" on me just leaving me to District Nursing. Believe me I did see just about everyone and I couldn't wear the usual treatment of compression bandages.

     

    I have also had an ulcer on my shin after trauma to it and it became my third bout of cellulitis in 5 months, landing me in hospital.

     

    If the ulcer does not shift or appears infected I would get medical treatment. Remember that with scleroderma and Raynaud's (I assume you also have this) digital ulcers can progress to infection, gangrene and amputation

     

    For people with just Raynaud's, after an attack their blood vessels return to normal but thanks to scleroderma, scarring to our blood vessels can occur making Raynaud's treatment ineffective so we really have to be on top of controlling our Raynaud's and seeking medical attention sooner rather than later.

     

    Take care and keep posting.


  6. Hello Esme

     

    Welcome and there's been quite a few people of late posting because despite a lack of symptoms they have been diagnosed with scleroderma based solely on a blood test.

     

    I can only reiterate what has already been said which is that blood tests are a bit of a red herring. As it happens I have systemic and localised scleroderma but my blood work is and always has been negative. In fact if you put my anonymous blood test results in front of any doctor they'd say that there was nothing wrong with me! Methinks different.

     

    Until you get symptoms, that is if you ever get any, then I would not worry about it and if you want to see a list of systemic scleroderma symptoms, have a look at our video of systemic symptoms.

     

    Take care.


  7. Hello Andee

     

    Welcome and may I echo what has already been said, until you have specific symptoms you don't really have scleroderma because positive blood work without symptoms means very little. Sure, Raynaud's is a symptom but most people with Raynaud's don't have scleroderma although most people with scleroderma have Raynaud's. You may never develop any symptoms either.

     

    I have negative blood work and always have done but have both localised and systemic scleroderma then there's you with no symptoms but positive blood work. Wanna swap? No?! You might find it helpful to have a look at our video series especially those about diagnosis and symptoms of scleroderma.

     

    You are on the the rheumatologist's radar having tests etc so you're not starting from the other side of the door. Please let us know the outcome of your appointment and keep posting.


  8. Hello Debbie

     

    I have both systemic and localised scleroderma with morphea and bullous morphea. My patches of morphea are rather hard to detect now because most of my skin on my arms and legs is scleroderma brown! The blisters are a nuisance and are on my shins, they're very painful and when they burst can ulcerate.

     

    Morphea can burn itself out even without treatment but as Shelley has already said there is a preferred treatment for it. I am in the UK and there are not many centres offering UVA-1 Phototherapy with none anywhere near me. Having said that, for me, morphea has always been overshadowed by its systemic counterpart.

     

    Take care and keep posting.


  9. Hello Kathy

     

    Having been a person who vomits frequently because of migraines, the strain of vomiting can result in lovely, little red spots and swelling. Perhaps this contributed to the swelling?

     

    Whatever it is I hope you find the cause and enjoy relief from it.

     

    Take care.


  10. Hello Mystique123

     

    Welcome to the forums! You might find it helpful to have a look at our video series, especially diagnosis of scleroderma, symptoms of scleroderma and difficult diagnosis of scleroderma.

     

    Night sweats is not a scleroderma symptom although Raynaud's is, that said the majority of people with Raynaud's do not have scleroderma although the majority of people with scleroderma have Raynaud's. Not everyone with Raynaud's have colour changes or have it severely. I have it mildly with cramp when cold being my worst symptom.

     

    ESR and CRP measure inflammation and both being low means inflammation is low which is a good thing, as for ANA it is not automatic that people with scleroderma have a positive ANA. I have systemic and localised scleroderma with a negative ANA and some people with a positive ANA never develop scleroderma.

     

    Symptoms are the key when it comes to achieving diagnosis of scleroderma with biopsy and blood tests as well as any symptom specific tests being used to support diagnosis and categorise the type of scleroderma.

     

    Please keep posting and have a good wander around this rather splendid site!

     

    Take care.


  11. Hello Marchr

     

    Welcome and sorry your Mum is ill. I have Raynaud's, albeit mild and my hands do not change colour. My worst symptom when my extremities are cold is cramp because of the Raynaud's. Before I knew the cause of it I used to tape my fingers together to try and stop it, now I know better!

     

    I have Sclerodactyly it's my hands in the video. My early symptoms were swelling, pins and needles and years prior, pain in my hands when typing. I never woke up with claw like hands, in fact the beginning of sclerodactyly for me was ruler straight hands and fingers. The tight skin covered my arms and hands fixing my wrist and finger joins immobile so nothing would bend, at all! I couldn't even rotate my hands round to have the palms facing my face. Eventually the tight skin caused finger contractures and over the fingers went. Actually it is much easier to do anything with fingers curled than completely straight, who'd have thought it!

     

    My symptoms came on within 6 months but I have rapid onset diffuse and not everyone is this quick! I do not have and never have had positive blood work for scleroderma. Symptoms of scleroderma can come on at any stage, I developed reflux a few years in whereas for others it's a diagnostic symptom. 

     

    It's not a pleasant disease, I wouldn't recommend it but then I don't know of any disease anyone would! What I do know is that you can carve out a good quality of life. It ain't easy but family support really helps and your mother clearly has that.

     

    "or did things begin to dwindle on their own after 3-5 years (apparently this happens to most people" 

     

    Yeah, I have debated this with my rheumatologist before because I have NEVER met or heard of anyone with systemic scleroderma who has this experience. I actually think it's bunkum but that is just my opinion. 7 years in and I still await this plateau, as they call it, but I have to acknowledge that scleroderma can wax and wane of its own accord. As for it dwindling without treatment, that refers to the localised types of the disease as far as I am aware. Localised scleroderma does not affect internal organs and is never life threatening.

     

    Finally seeing a scleroderma expert is always our recommendation, this disease is just too complex to chance to rheumatologists who have no experience of it.

     

    Take care and keep posting.


  12. Hello LCT2007

     

    This is why it's so important to see a scleroderma expert, as in one on the list that Jo has given you the link for. 

     

    It seems that the conclusion is that your daughter has scleroderma and it's just a matter of time but not everyone with Raynaud's develops scleroderma.  As it is there is no diagnostic, sure fire marker. You see positive ANA & SCL-70 does NOT  mean you have or will have scleroderma just as negative ANA & SCL-70 does not mean you do not have scleroderma. Based on his logic, I don't have scleroderma because my blood markers are ALL negative but I have one of the worst forms of the disease.

     

    Also, scleroderma can affect the kidneys but cautious of predictions of what organs will be involved. At diagnosis I had NO internal organ involvement just massive skin involvement with negative blood work and I was told that it was highly unlikely I would develop internal organ involvement because I had negative ANA & SCL-70,  Imagine my surprise to find myself with myocardial fibrosis and serious heart failure two years later. I was not impressed.

     

    My blood work was negative at diagnosis and has remained so for the 7 years I have had the disease but it's worth bearing in mind that blood markers can change from positive to negative and so forth.

     

    It is really good that your daughter is being monitored and if you're going to seek a second opinion, which is a good idea, why not make it a juvenile scleroderma expert?

     

    Going to meetings is always useful because you'll meet other people with the disease but being informed works both ways and I don't envy you the weight you're carrying for your daughter.

     

    Please bear in mind that I give my opinion as a person with the disease not an expert of the disease and I have no idea whether your daughter has/won't have scleroderma. I am aware that Raynaud's can be a predictor for it as can a positive ANA & SCL-70 but I do believe (as a non medical layperson) that these two alone don't automatically mean scleroderma.

     

    Keep posting and take care.


  13. Hello Lct2007

     

    Welcome to the forums although I realise you'd rather be anywhere else.

     

    Although a large percentage of people with scleroderma have Raynaud's (Raynaud's Phenomenon or Secondary Raynaud's) only a small percentage of people with a primary diagnosis of Raynaud's ( Raynaud's Disease or Primary Raynaud's) also have scleroderma. Odds are in your daughter's favour that she won't have scleroderma.

     

    As for antibodies, what a nuisance they can be! You have people with scleroderma and negative antibodies (like me) and people with positive antibodies and no scleroderma, what a palaver! That's why symptoms are the key and thus far your daughter only has Raynaud's as do thousands of other people who don't have scleroderma. 

     

    For you both it's a waiting game I'm afraid, please do post often.

     

    Take care.


  14. Hello Vfazfont

     

    Welcome and most of what I could say has already been said! I can confirm that diagnosis of scleroderma can be long and arduous because there is no one diagnostic test to confirm it, rather diagnosis is based on symptoms, physical exam and clinical history. I suggest you see a scleroderma expert and have a look at our scleroderma video series which includes videos about symptom and diagnosis of scleroderma as well as our Raynaud's video series.

     

    Take care and keep posting.


  15. Hello Dbig
     
    Welcome to the forums. Slow healing is not, I think, automatic in scleroderma but as the follows says, depends on the individual:
     
    "They used to advise all scleroderma patients to avoid surgery whenever possible, due to concerns about wound healing. Now that is not a blanket recommendation, but rather is an issue to be considered on an individual basis." 

     

    What is accepted is that stress impedes wound healing, have a look at our emotional adjustment page, it's full of good advice.

     

    I am not aware that scleroderma itself causes bruising but morphea plaques (a type of localised scleroderma) can look like old bruises.

     

    As Jo has already said diagnosis of scleroderma requires more than positive blood work, have a look at the list of systemic scleroderma symptoms, mind you many of them may be similar to those cause by your existing illnesses.

     

    Should you have scleroderma, it will be an overlap disease which means you won't get the full spectrum of the disease but some of it which is a positive.

     

    Let us know how you get on and take care.


  16. To substantiate the evidence, RCT's should be performed in patients with RA selected for having fatigue.

     

    I note that the participants were not chosen on the basis that they were experiencing fatigue but I think the trial accounted for this in its calculations. Why not choose participants with fatigue when trying to establish the effects of exercise on fatigue rather than calculate out any bias?

     

    I would also like to know HOW  did the participants perform aerobic exercise? If rheumatoid arthritis affects the joints with the movement of them causing pain, how did the participants exercise? Some people with RA end up wheelchair bound or have difficulty walking and standing. Am I to assume that these people were not used either, that rather fit and healthy people with RA were used to take part in the trial?

     

    I ask because I am wheelchair dependant because of scleroderma and have just started working with a dietician and am soon to start with a trainer. I canNOT undertake aerobic exercise because I can't stand and neither can I swim because I could not get in and out of the pool for starters, the RA participants undertook land based exercise anyway. If it's possible to exercise aerobically even though you can't stand, I would LOVE to know how so I can do so and having raised my heart rate sufficiently, lose weight.

     

    I don't get it I'm afraid. Personally, and it's just the opinion of a lay person with scleroderma, I fail to see the point of a trial about the effects of exercise on fatigue in RA that does NOT use participants with fatigue and neither does it explain how said participants managed to perform aerobic exercise. Am I to assume, as it happens I do, that the participants had what we'll call mild RA? We know they were not selected for having fatigue and they must have been fit and well enough to exercise.

     

    If I have misunderstood the extract please correct me and feel free to explain it to me. No doubt it's just where I personally am at but I don't see the point of this abstract. That's not to say I don't thank Jo for taking the time to find it and put it on site. Thanks to Jo and of course Shelley we have a truly stellar news archive with the most current articles posted almost daily. Not sure many other sites can boast about that.

     

    Take care.


  17. Hello Automartin

     

    Welcome to the forums!

     

    Please see our difficult diagnosis resources as well as our symptoms of scleroderma and diagnosis of scleroderma, all of which include short videos. Hives are not a symptom of scleroderma and although fatigue is common to scleroderma (can be crippling) it's not actually a diagnostic symptom for scleroderma because it can be caused by many other diseases.

     

    Diagnosis of scleroderma is usually based on a combination of clinical history, physical examination, presentation of symptoms with blood tests playing a supporting role and they can also help to further categorize the type of scleroderma but should not be solely relied upon to provide or rule out diagnosis. It is possible to have blood work positive for scleroderma with no symptoms (now or in the future) and to have scleroderma symptoms with negative blood work. I have rapid onset diffuse systemic scleroderma but with negative ANA & SCL-70 and always have done and my rheumatoid factor is normal.

     

    Symptom lead tests and biopsy can also help to determine what ails us and with scleroderma being so complex and difficult to diagnose every test helps. Unfortunately there is no one test to rule scleroderma in or out and with blood tests further muddying the water it is important to have a symptom led diagnosis preferably conducted by a scleroderma expert as already stated by Jo.

     

    I have no idea whether you have scleroderma or not but either way I hope this helps and please continue to post any questions you may have as well as letting us know how you get on.

     

    Take care and keep posting.


  18. Peggy, I don't know if this helps but 99% of my blood draws involve digging around, trying to find the vein. When the anesthetist, doppler in hand, had to put the cannula needle into a deep vein and moved the needle up, down, all around it was less painful than the initial stick, what they call "a sharp scratch". Sharp scratch my eye! Mind you I guess that's the point, the initial "sharp scratch" is really painful!

     

     

    Take care.


  19. Hello Sweet

     

    Do you mean that you have NOT had an amazing, spontaneous total plateau, in which everything gets better and scleroderma just slopes off into oblivion? No? Shocker! 

     

    Hmmm, after 7 years I have not met anyone who has had such a plateau either, oh, sure scleroderma has stopped trying to kill them at every turn but the damage done is, well, done. 

     

    :emoticon-congratulations:  :emoticon-congratulations: Here's to the expected permanent continuation of your disability benefit. :emoticon-congratulations:  :emoticon-congratulations: 

     

    Take care.


  20. Hello Peggy

     

    Plaquenil is included in the class of drugs called DMARD (disease modifying anti-rheumatic drug) and is actually classed as an antimalarial drug not an immunosuppressant. It is also used to treat Lupus, usually with immunosuppressants, and Rheumatoid Arthritis. Plaquenil has potentially serious side effects such as permanent dark skin plaques, which resemble black and blue marks as well as toxic retinopathy.

     

    It is certainly a very serious drug and its continuous use worthy of review but if you stop it (titrating down and off) would not the symptoms it suppressed reappear to trouble Gareth?

     

    Take care.


  21. Hello Pinetree

     

    Good, good and even better!

     

    Remember to be kind to yourself, for instance, if you were on prescription painkillers for 3 months you should have titrated down and then off of them rather than go cold turkey. Doing so not only causes us emotional stress but can also stress the body and be dangerous because we become physically dependent on any chemical we take for an extended period of time. I say dependent not addicted, that's another matter.

     

    I have titrated down and off sleeping tablets, steroids and decided to abruptly stop amitriptyline after being on it for a number of years and then wondered why I was a wreck for weeks. Duh! We've all done it but no way am I doing it again!

     

    Also be kind to yourself returning to work, I don't know how long you were off for but when I was off for 3 months I had to do rehab hours on my return and it took a month to build back up to full time! I was amazed at how hard I found it and really did need to start slowly.

     

    I understand dropping off the edge of the world, I did 7 years ago and am still waiting to come back! :lol:  :lol:  :lol: 

     

    Take care.