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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Dimarzio,

     

    As it happens, either cold or hot water can set off attacks of Raynaud's.  So, when it's an option, try for warm water (even in bathing). And then buy a big supply of packaged hand wipes, and keep them handy in the car, pockets, purses, bathroom...everywhere.

     

    It is always worthwhile to avoid an attack of Raynaud's. See Raynaud's Prevention for more tips!

     

    I don't have any particular experience with that blood pressure medication.

     

    :hug-group:


  2. Hello Aodom,

     

    Welcome to Sclero Forums. Here is a recent research article that includes U3 RNP that you may find helpful, Autoantibodies in Systemic Sclerosis: Unanswered Questions.

     

    Basically, as Jo mentioned, the autoantibodies mean very little all by themselves. What really matters, a lot, is the reason(s) why your doctor ran the test in the first place. Meaning, your symptom(s) are generally far more important than the antibodies. So while you are waiting for more information on your test results, it may be a good time to look into the symptoms of systemic sclerosis, and see whether any of them apply to you right now.

     

    For starters, you may want to view our Diagnosis of Scleroderma resources, as well as What is Scleroderma? which explains the various types that can occur.

     

    :hug-group:


  3. Hi Itchy,

     

    Welcome to Sclero Forums!  I'm sorry that you have UCTD and now issues with itching. Many things can cause itching besides, or along with, scleroderma, of course -- including Sjogren's, which can cause severe skin dryness, too.

     

    With my particular scleroderma skin involvement, during the fibrosis stage(s), I experience swelling, itching, burning, plus tingling and other odd pain which feels like my skin is tightening, which it literally is, of course. I'm sure probably everyone is different, but I don't get lucky enough to have *only* itching, even though the itching can be enough to drive me up the wall during an acute phase.

     

    Because itching can be caused by so many things, I strongly recommend that you see your doctor, and perhaps a dermatologist as well.

     

    I also get very dry skin which can cause itching all by itself and is not part of an inflammatory process. For that, I have found relief with several different things. My favorite one is slathering on coconut oil and then taking a lukewarm shower -- with no soap -- and then blotting dry afterwards, and putting on more coconut oil.

     

    If you try this out, and think it over, and really feel that it is likely following the pattern of scleroderma, then I suggest you consult a listed scleroderma expert for evaluation.

     

    Using pure oils (of nearly any sort you like) is good for some of us, because it bypasses a lot of other ingredients that could cause dryness or allergies. Oh, and Bag Balm is good, but it is very thick, so I have only used it at night and then covered up (with gauze or clothing) to avoid staining furniture and bedding.

     

    You can also take a delightful baby oil bath, as mentioned on our Xerosis (Dry Skin) page. It works best when you also play classical music and take it by candlelight -- because that helps reduce the tension caused by that incessant desire to itch!

     

    Another trick I've used is to put a cold pack on my neck. It doesn't stop the itching or relieve the dryness (the other steps are still necessary, especially seeing your doctor), but what is does is interrupt the pain signal so you focus more on the thought of how cold your neck is, and breaks or relieves the mental obsession for a bit.  ANY healthy distraction is good!

     

    But, that's also why itching can be more prominent right at bedtime, because there is often little else to think of so it gets the chance to command center-stage. If we let it!

     

    :hug-group:


  4. Hi Logan,

     

    Well, partly it would depend on if your mother is actually diagnosed with scleroderma, since there are many ailments that can affect the stomach. I'm not sure what the statistical odds might be in any given family.

     

    I'm not aware of any particular clusters that have been identified in the UK, however some cases are known to be caused by genetics and by environmental exposures.  See Causes of Scleroderma.

     

    I have had several in-laws who also have scleroderma, but in different sides of the family and different parts of the country. So sometimes I think it just boils down to chance.

     

    I'm sorry that you've had any of it in your family, though, and I hope that there is something that will make your mother's stomach a bit better. Please keep in touch.

     

    :hug-group:


  5. Hi Dimarzio,

     

    As it happens, scleroderma isn't known for causing the all-over aching that you are describing. Generally that is due to things like depression and/or fibromyalgia. You can ask your doctor to do a fibromyalgia tender point exam (it is very fast and easy) to check that out.

     

    We can't really get into a lot of discussion about sleep medications here, because of our guidelines about drug-seekers on internet forums in general. However, I strongly recommend that you ask your doctor about the possibility of having sleep disorders testing done.  There are many different types of sleep problems, and you might, for example, be trying to treat a sleep apnea problem with medications, which simply doesn't work. Plus, sleep problems are common in the general population but in scleroderma, as well.

     

    :hug-group:


  6. Hi Maamen,

     

    Welcome to Sclero Forums. I'm sorry your wife has scleroderma and send my best wishes to both of you. In order for her to get appropriate care and possible clinical trials, you would want to have her consult a listed scleroderma expert.

     

    We have a huge sections on our main site for Scleroderma Treatments and Clinical Trials.  In addition, we have over 1,000 patient and caregiver stories (organized by type and by symptoms) from around the world which reveal the tremendous variety of symptoms and progression that can occur.

     

    Most treatments depend on individual symptoms that someone is encountering. So you may also want to look up your wife's individual scleroderma symptoms, where we provide the very latest research plus handy tips for dealing with each one, as well as many scleroderma videos.

     

    The best research you could possibly do for her would be to get her to a real expert in this disease, because it is so rare, and unique in its presentation, and treatment.

     

    :hug-group:


  7. Hi Dimarzio,

     

    Welcome to Sclero Forums. I'm glad you found us!

     

    As for what's normal with scleroderma, the only thing normal about it is that takes a different course and timeline for everyone. It also typically waxes and wanes on its own accord, even without treatment, which means that it may get worse and then for no discernable reason, get better. And so on and so forth.

     

    We have over 1,000 patient stories on our main site (and in our Voices of Scleroderma book series, which is based on them), and I have yet to find any two stories that appear to match. The most helpful thing of all, that most of us will tell you, is to be sure to consult a listed scleroderma expert so that you receive the best care possible. And to seek quality support -- such as our fabulous Sclero Forums!

     

    :hug-group:


  8. Hi Enikail,

     

    I'm sorry that you are so upset, but I'm glad you found our forum so you can get some answers that will hopefully help calm you down.  Just please keep in mind that severe emotional stress can be a medical emergency, and call locally for help if you need it, such as your doctor or even any emergency line.

     

    The problem might be that in a distressed state, it is very hard to do significant, clear-eyed internet research. When we are upset, we are naturally inclined to absorb only the worst possible information, or even total disinformation.

     

    As it happens, SCL-70 is positive in around 25% of lupus patients.  Lupus and scleroderma can both be rather mild or very serious, so I'm not sure why you would particularly prefer lupus, or why it would be more comforting to you, but perhaps that is because lupus is a more familiar term than scleroderma and you may be familiar with famous people who are living successfully with it.

     

    The general rule of thumb they have is that if we feel emotionally disturbed for two weeks after a major stressor (or severely distressed over anything), we should see our doctor to see what can be done. Sometimes all we need is a bit of reassurance, other times we may need medication and/or counseling to help us make a healthy adjustment with whatever challenge we are facing.

     

    Please keep in touch and let us know how you are doing. And of course, be aware that none of us are psychologists or medical professionals, so we can't take you by the hand and steer you to the safe zone. That is why having local professionals (doctors, counselors) to help is downright necessary for most of us when first confronted with serious illness issues.

     

    I'm sending lots of warm hugs your way!

     

    :hug-group:


  9. Hi Amanda,

     

    That's fascinating that your identical twin sister has follicular lupus, and you have systemic sclerosis. I think it makes a fair amount of sense, because you are both probably genetically predisposed to getting some sort of autoimmune disease on a basic level, and by a roll of the dice, the inflammation affected you each in different ways. (See Causes of Scleroderma: DNA, Genetics, Race)

     

    Take a gander at our Scleroderma Registry section, and see if there's an appropriate place to donate some of your DNA. You'll see there is an Twins with Autoimmune registry in the U.S., but I don't know if there is one just like that in the UK, or not.

     

    :hug-group:


  10. Hi Mare,

     

    I am delighted that you were able to consult a scleroderma expert.  I know what it is like to wait for test results, sometimes it feels like half my life has been spent waiting for one result or another!

     

    This might be a good time to read through forum archives of members who have been waiting for the results of this test or that, or this diagnosis or that, over the years, as many helpful hints for dealing with this phase are lounging about. Most of us will say that the time between onset of symptoms and diagnosis was the absolute worst time for us ever in dealing with the disease. By comparison, it's a piece of cake to deal with any eventual diagnosis.

     

    I just need to warn you that it is an average of six years from onset to diagnosis of scleroderma.  Sometimes the process is speeded up a bit by seeing an expert right away (which is why we strongly recommend it whenever there is good suspicion of scleroderma).  BUT the disease itself can onset very slowly, can be similar to a great many other illnesses, and can take years and sometimes even decades to firmly declare itself.  It hardly ever happens for a person to see an expert once and then voila, have a diagnosis of scleroderma. It is much more normal for someone to slog through years and years of tests and follow-ups and differing opinions and just general mass confusion.

     

    I mention this in hopes that this tampers your expectations, both for yourself and for your rheumatologist. They cannot create a diagnosis out of thin air, even when they strongly suspect one. It is just as much a waiting game for them as it is for us. And if their response right now is that it is too soon to tell precisely what you have, please do not be discouraged.

     

    Many of us here know how it is to be terribly ill, to want and need immediate answers, and to be frustrated at every turn in the road. But in those cases, neither the patient nor the doctor are at fault, but rather those extremely pesky autoimmune diseases which are often extremely challenging to diagnose. I'm not saying you won't get a diagnosis, but only that it would actually be pretty unusual if you get firm answers, this soon after onset.

     

    :hug-group:


  11. Hi Stephen,

     

    Please keep in mind that I am not a doctor and have no medical training at all, and that we cannot diagnose or rule out any condition on our forums. So I'll only give my best guesses and ask that you rely on your doctors for actually figuring out your present health situation, of course.

     

    As it happens, the systemic types of scleroderma do not cause raised patches or local clusters of bumps, a bit like insect bites.  Rather, the skin changes are colorless and affect both sides of the body at the same time, for example, a colorless skin hardening beginning in the fingertips and going up the hands.

     

    Morphea scleroderma, which is a form of localized scleroderma, occurs in colored patches of skin, and not matching on both sides of the body. Usually the plaques are reddish with a lighter colored center. Bumps like an insect bite are not a normal description for morphea. Generally, a dermatologist will biopsy unidentifiable skin lesions, and together with the blood tests that might help figure out what is causing your symptoms. Your description -- only of the skin, not your other issues -- sounds a little bit more like eczema than any type of scleroderma. But, I may be wrong -- I often am! -- and of course we are back to that "not a doctor" reminder once again.

     

    It's possible that you may have several things wrong at once. That is quite common as we age, and although it may seem to "add up" to an underlying disease, sometimes the problem is really an accumulation of age-related issues or the systemic effects of other illnesses, like diabetes.

     

    You just won't know though until you have all the testing done. Please stay in touch and let us know how things turn out. Please remember that we are always here for you, regardless whether your diagnosis is scleroderma, or not.

     

    :hug-group:


  12. Hi Grey,

     

    UVA1 phototherapy is done in a dermatology office that has UVA1 phototherapy equipment. It is like a vertical tanning booth, and the major side effect is that you get a sun tan. You wear equipment to protect your eyes and/or face, and minimal clothing. The sessions take literally just a few seconds and are entirely painless.

     

    Normally people are prescribed a certain series of treatments, such as, 2 or 3 per week for 3 months. Then the treatments are assessed and regular skin surveillance is done by the dermatologist. It has been proven to be effective for morphea scleroderma (also other ailments like lupus and psoriasis) and there are reports that it has been helpful for some people with systemic scleroderma, especially with skin involvement. The biggest trick is finding a dermatology office that has the right equipment, so it is usually found in larger metropolitan centers.

     

    Please review this information with your scleroderma expert to see if it might be appropriate or worth a try in your particular case. For example, some people are on medications that necessitate sun avoidance (like methotrexate).

     

    :hug-group:


  13. Hi Grey,

     

    It's very important to see your scleroderma expert and to also get occupational therapy at the first sign of any scleroderma hand involvement, even if all you are experiencing is finger puffiness and/or stiffness.

     

    It's actually fairly uncommon for things to progress all the way to frozen, curled hands in systemic scleroderma, especially if you receive proper care early on. I had a year of occupational therapy nearly two decades ago and resume the steps I was taught (measuring, warm wax treatments, and hand exercises) as needed. 

     

    My fingers still have varying puffiness and stiffness, but are still quite functional, with just some reduction in grip (making things like filling the gas tank or opening jars challenging or sometimes impossible.) There are varying results with UVA1 for sclerodactyly, but I have found UVA1 treatments particularly helpful, as well.

     

    Avoiding and promptly treating attacks of Raynaud's is thought to also help avoid or reduce disease progression in scleroderma, so becoming an absolute pro at avoiding attacks, and having an arsenal of ideas for responding to them promptly, may also help preserve scleroderma hands.

     

    With the occupational therapy, I had special splints made for daytime and nighttime. The point of them was to mold my hands into the most usable position, should the hand inflammation/fibrosis progress. Every once in a while, it feels like I should go back to using them again, but then things typically relent after a spell.

     

    I also get "trigger fingers" and that can go in spurts of being very troublesome for awhile, and then improving. For example, my fingers can quickly get stuck in a position, often when carrying a bag or trying to use a knife or scissors. When that happens, I merely stop what I'm doing and wait for it to relax (without ever trying to force it, which can be harmful). And I pay very close attention to ergonomics to reduce the impact of carpal tunnel (and in my case, ulnar tunnel.)

     

    The most important thing is to try to prevent scleroderma hand involvement, because once it has a good foothold, there is currently very little that can be done for it -- although there are some very hopeful clinical trials in progress right now, aimed specifically at this, such as the Cytori STAR trial.


  14. Hi Angelily,

     

    Welcome to Sclero Forums!  I'm sorry you have symptoms like that of Sjogren's syndrome, and that you need answers in that regard.

     

    As it happens, not everyone with Sjogren's expresses positive or definitive antibodies. Other tests that can be done in an effort to diagnose it include Schirmer's test, which is just a strip of paper put in the eye for a few minutes to stimulate tear production; sialogram (an x-ray of the parotid gland, with dye injected); and a lip biopsy. 

     

    I've had all those tests (I have Sjogren's.)  Given my experience, I'd recommend the Schirmer's first (very fast and easy and painless, typically done by an opthalmologist); then the lip biopsy (a simple in-office procedure and not as awful as it sounds (it is on the inside of the mouth, not on the outside of the lips); and then the sialogram, which is my least favorite of those tests.
    Many people don't find the additional testing worth it, as their symptoms might be fairly mild (considering) and treatment is often the same, with or without diagnosis (such as, eye drops for dry eyes, etc.)

     

    It's possible, of course, to have dryness problems caused by other things -- especially medication side effects -- without having the underlying disease. Please keep in touch and let us know how things develop for you.

     

    :hug-group:


  15. Hi Regalize,

     

    Welcome to Sclero Forums! 

     

    I'm sorry you have rapid onset diffuse scleroderma and that you are also encountering some medication issues. Unfortunately most treatments for very severe diseases also run the risk of being quite toxic, so it is a constant weighing of the risk versus benefit.

     

    Thank you for your interest in Resunab, and for mentioning it. I thought it might be helpful to explain it a bit more for others who are curious about it.

     

    As it happens, Resunab is just starting Phase 2 clinical trials in the U.S., to see if it might be effective, and safe, for diffuse scleroderma. Pre-clinical studies looked promising for reducing inflammation and fibrosis without suppressing the immune system.

     

    Unfortunately we have seen many potential treatments complete even phase 3, appearing to be quite positive, before being proven to be of no use for scleroderma. That is because the illness has a natural course of waxing and waning, even without any treatment at all, which usually causes great confusion, making treatments appear effective which in the end are shown have no effect at all. That's not to say this will happen with Resunab, it's just a disclaimer for scleroderma clinical trials in general.

     

    Although Resunab (by Corbus Pharmaceuticals) has been fast tracked by the FDA in the U.S., the clinical process still remains quite long, especially for those of us who are eager for an effective new treatment right now. Phase 2 for this trial just started recently, and is scheduled to take 18 months. Then Phase 3 clinical trials generally take about 3 years, after that.

     

    The FDA Drug Approval Process explains more. And we have many more listings of current Scleroderma Treatments and Clinical Trials on our main website.

     

    :hug-group:


  16. Hi Stephen,

     

    Welcome to Sclero Forums.  I'm sorry you are experiencing concerning symptoms and hope that you get some answers soon.

     

    As it happens, systemic scleroderma is most common in women of childbearing age. That said, it can occur in absolutely anyone, from newborns to the very elderly, both male and female. When it occurs in men, it is most often due to occupational or environmental exposure (such as certain construction workers.)  See Causes of Scleroderma.

     

    It is also possible for symptoms to be caused by aging, and many other diseases, so things like heart disease and diabetes should also be ruled out, which is why your doctor is running tests, of course. Typically, systemic scleroderma skin issues begin with swollen and achy hands, and occurs about equally on both sides of the body; it is not very likely to cause a small patch by the elbow on just one side. However, localized scleroderma (the type that affects primarily the skin, like morphea and linear), occurs in colored (reddish or brownish) patches and does not match on both sides of the body.

     

    There are also many other skin conditions that could account for the patch, such as psoriasis or eczema or even a callous.

     

    I know how worrisome it can be to have symptoms that are as yet undiagnosed. I find it helpful in situations like that to assess all the possible outcomes (so I am mentally prepared in case of the worst outcome) and then try to pick the most harmless explanation to focus on during the wait for test results. Now you know about the worst it could possibly be, but because scleroderma is so rare, and even more rare in men, not to mention elderly men, I hope you find that to be a little bit comforting -- by at least reducing the statistical odds -- while you wait for answers.

     

    The many types of scleroderma can be enormously confusing, so you may want to look at our main site for What is Scleroderma? and also for Diagnosis of Scleroderma.  Please stay in touch and let us know how things turn out for you.

     

    :hug-group:


  17. Hi Mammabear,

     

    A bucket list is a great idea for anyone, whether they are healthy or sick. 

     

    It's a very positive approach to take, and also one to revise whenever your abilities increase or decrease. At the top of my To Do list, I always put Rest - Refresh - Relax, so that I always have a sense of accomplishment, come what may, and that alone makes me happy.

     

    Sometimes you may need to swap out Tour of Europe to Tour of Neighborhood Coffee Shops. Or swap Become Olympian Gold Medalist for Play a Card Game Tonight. What matters isn't achieving any bucket list items, so much as having a list of things that we can look forward to.  Setting a timer to watch the sunset tonight can be just as inspiring a goal as climbing a mountain, if we're doing what is within our present abilities and entirely letting go of self-pity (so that we can wholeheartedly enjoy it.)

     

    :hug-group:


  18. Hi Miocean,

     

    I'm thrilled that you are finally home!  I've found there is a vast difference between hospitals, even ones in the same neighborhood. You may not notice it quite so much if you're in an area of outstanding facilities, or if you go to the really major centers. In the poorly equipped and staffed centers, sometimes the caring of a few staff members really shines brightly, as we are so aware of the exceptional effort they are taking under adverse circumstances. 

     

    I hope that you settle in okay at home now, and that your home services are helpful, too.

     

    :hug-group:


  19. Hi Mammabear,

     

    One of the things they study in regard to scleroderma is "fear of progression".  It is so easy for us to sink into fear, over anything, not to mention something like scleroderma!  But that's one reason why we all hunker together here, to provide inspiration and encouragement for each other.

     

    I've long outlived many dire predictions, and many others here have, too. I find it helpful to try to focus on how to make today as fun and happy and joyful as possible. By building many little joys into our daily routine, we don't need to fear the future quite as much, because we have confidence that we can find some way to somehow make ourselves happy regardless of our outward circumstances.

     

    The most difficult thing for me was learning to not take life so seriously just because I had a serious illness. The illness will be whatever it is going to be. We have little control over that, except for trying to get the wisest counsel and do our best to follow it.  Then for the rest of it, it can help reduce our stress to take things as lightly as possible; to try to find the silly side of ourselves and of humanity.

     

    I hope your new wonderful friends here will warm your heart this holiday season and brighten your life in the coming year.

     

    :hug-bear: :hug-bear: :hug-bear:

     

    :hug-group:


  20. Hi Miocean,

     

    Wow, I was not expecting an update like that. I'm sorry all this has happened to you, and right when you wanted to be going on vacation. And now you might be stranded in the hospital for the holiday, too?

     

    Well, I am thinking of you and sending lots of good thoughts your way. I don't want to even imagine your holiday dinner. Like, yuck!

     

    Are you at least rid of the crazy roommate?

     

    :hug-group:

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