Jump to content
Sclero Forums

Shelley Ensz

Administrators
  • Content count

    3,644
  • Joined

  • Last visited

Posts posted by Shelley Ensz


  1. Hi Dechri,

     

    One aspect to consider is that some scleroderma experts only see people who are referred by another rheumatologist.  Often they will request complete medical records before agreeing to take on a case. So it can be very helpful to have various symptoms tracked down and documented.

     

    Consulting a board certified dermatologist for skin issues can be helpful. Be sure to take (good) photos of any skin abnormalities, such as rashes or discoloration. If your doctor recommends vascular lab testing to prove Raynaud's, or any tests that could nail down one of your symptoms, jump on it.

     

    Regularly request your medical records so that you have any pertinent ones available for consultations.

     

    Probably the vast majority of scleroderma patients first see local rheumatologists.  Very often they get diagnosed with something that is more common or that the rheumatologist is more familiar with, such as fibromyalgia or lupus. I'm not saying don't trust local rheumatologists, but if you have very clear symptoms of scleroderma, such as skin tightness or pulmonary fibrosis, also maintain enough wherewithal to consult a scleroderma expert, and get their input on the matter.

     

    Connective tissue diseases can take years to manifest and develop.  The languid course usually offers plenty of time for patients and doctors alike to debate what is, what is developing, or what was misdiagnosed.  So getting individual symptoms diagnosed and documented and treated as they arise, is the most common course of action.  It is very rare for people to get such prompt diagnosis as Jo, and her case was helped along substantially by getting referred to the proper experts immediately.

     

    :hug-group:


  2. Hi Madusa,

     

    Welcome to Sclero Forums. I'm sorry that you are concerned about possible scleroderma, and send my best wishes to you.

     

    As it happens, it is possible, although quite rare, for scleroderma skin involvement to onset rapidly.  I know a few weeks seems like forever when you are sick and worried, but it is common for people to wait for months to see a rheumatologist for the first time. In the interim, stay in touch with your primary care doctor and see them for any change in your symptoms. They may be able to hospitalize you to jump start treatment of some sort.

     

    You're very fortunate to be in the U.K., where they have truly fabulous world scleroderma experts who stay on top of all the latest developments.

     

    :hug-group:


  3. Hi JustAsking,

     

    Welcome to Sclero Forums. Since lab test analysis varies, it is important to check what your lab report says, and what your doctor says the test result means, in light of your symptoms.

     

    This is important because it is possible to have antibodies without associated illness, and it is possible to have illness without antibodies. Generally speaking, it is the symptoms that rule the day when it comes to a scleroderma diagnosis.

     

    We are not doctors, so we cannot diagnose nor rule things out. However we do have some good resources on Scleroderma Diagnosis, including videos and symptom check lists. Scleroderma is far more common in females. In men, it usually occurs due to occupational exposures (such as construction workers, miners, or firefighters.)

     

    I'm not a doctor (in fact, I have no medical training at all).  Lab ranges vary for every test, laboratory, and method that was used, so reference ranges for other tests are useless. The only range that matters is the one that is given by your laboratory. So, if they list it as Negative, it's negative, and if they list it as Positive, it's positive.  Even then, doctors sometimes decide that the test result isn't helpful if it doesn't correlate with the symptom pattern.

     

    The most telling symptoms for scleroderma are generally Raynaud's, tight skin, and pulmonary fibrosis; it's often more of a constellation of symptoms that leads to diagnosis, unless there is one very prominent symptom early on, like unmistakable tight skin.

     

    As it happens, Cushings can cause osteoporosis (low bone density) and vertebral compression (back pain and stiffness). I don't know if it can cause tenosynovitis (trigger finger) or not, but many things can, including repetitive use and many other forms of arthritis, too.

     

    :hug-group:


  4. Hi Miocean,

     

    If it's definitely not skin tightening from scleroderma, then it may be peripheral neuropathy/parasthesias and/or edema, perhaps caused by uremic neuropathy, given your kidney failure.

     

    If I were you, I think I'd see my nephrologist about this, before changing any medications. Both the pain patch and plaquenil are probably more likely to be helpful than harmful for you right now.  I can understand looking askance at the newest medications first (I always do that, too!), but in this case, you might want to have your doctors take a second look at the underlying illness(es), as well.

     

    Of course, that's just my two very uneducated cents, which isn't even enough to buy penny candy anymore!

     

    :hug-group:


  5. Hi Speedo,

     

    I may be wrong, I often am, but I think the take-home message from that research article was supposed to be that using enteric-coated mycophenolate sodium, instead of just plain mycophenolate mofetil, solves the absorption problem, when someone is also taking omeprazole. From what I can tell, it looks like the two drugs are supposed to be therapeutically equivalent.

     

    Enteric coated is a more advanced formula, which is supposed to help reduce gastrointestinal side effects. Which means it probably costs more, too. Oh whoops, I just looked it up, and it seems Myfortic has finally gone generic, so the generic cheaper than Cellcept now.

     

    You might also want to talk to the manufacturers directly. Genentech may be able to advise you as to whether just spacing out the medications is enough to overcome the malabsorption. Cellcept is made by Genentech, and Myfortic (the enteric coated) is made by Novartis.

     

    :hug-group:


  6. Hi Kathy,

     

    You'll need to see your doctor over any change in symptoms, including hot flashes, of course.  As it happens, hot flashes are very common in women, and as you've already discovered, they can be caused by many things other than just menopause.  As we age, our comfort zone for temperatures shrinks, so even without scleroderma or thyroid dysfunction or menopause or anything else, we are likely to encounter hot flashes.

     

    A first step is to review all your medications to see if this is a side effect. Many medications have this as a side effect, See Hot Flash Guide by Drugs.com. Hot flashes are the polar opposite of Raynaud's, so also look closely at any treatments you may be taking for Raynaud's, as it might be a bit overly effective at the moment.

     

    Please let us know whatever you find out about this with your doctor.

     

    :hug-group:


  7. Hi Kathy,

     

    Welcome to Sclero Forums. I'm sorry that you are sick, and dealing with conflicting opinions.

     

    If I were you, I'd seek a tie-breaker opinion from a listed scleroderma expert.  Since your illness is not moving fast or aggressively, and you don't yet have prominent symptoms of any particular connective tissue disease (such as a lupus butterfly rash, or tight skin from scleroderma, etc.), you might still have a long wait for a definite diagnosis. And, it might be beside the point if your symptoms remain mild, as about 50% of people with some symptoms of connective tissue disease never go on to develop a full-fledged, more specific, illness. Therefore, it's normal for many doctors to sit on the fence for awhile, waiting to see what else develops, if anything.

     

    It can be extraordinarily stressful to have reason to suspect serious illnesses, and more stressful to have loose or disputable answers. Most of us find support during this phase to be absolutely vital.  So I want to assure you that you, and everyone else in your position, are very welcome and encouraged to participate fully in Sclero Forums.  We know you know that doesn't equate to a diagnosis. But we know you know that you need and deserve support just as much, if not more, than someone who already has an iron-clad diagnosis.

     

    :hug-group:


  8. Hi Gillesley,

     

    Welcome to Sclero Forums. Many scleroderma antibodies are positive in morphea, and the National Organization of Rare Diseases lists alternate names for lichen planus such as guttate morphea and guttate scleroderma. So, perhaps your antibodies go along with the lichen planus?

     

    The way to check it out would be to see a scleroderma expert.  In any event, it's important to know that localized forms of scleroderma can occur with many antibodies, and those types are distinctly different from systemic scleroderma. So there is a projected normal life span with morphea, guttate, linear, en coup forms, etc. and they do not automatically progress to systemic, either, in fact, it is very rare for anyone to have both limited and systemic.

     

    Our in-house exception to that rule is Amanda, of course, who has both. It's possible your illness might be as bad as it's ever going to get. It's also possible that you might be developing another lesion of some sort on your forehead.  But I agree with your dermatologist, as I'd never want to have my forehead biopsied, unless it looked like cancer or there was no other choice, because it might leave a scar or make it more visible or prominent.

     

    :hug-group:


  9. Thanks for introducing and explaining this topic, Ed. 

     

    As you, Kamlesh and Amanda all mentioned, I simply want to reinforce the idea that untreated heartburn can lead to disastrous changes in scleroderma patients, including Barrett's esophagus and even cancer. So it is very important to discuss potential side effects and our alternatives with our doctors, but it can be very detrimental to our health to stop taking any medication on our own accord, just because we read or hear something adverse about it.

     

    Scleroderma is one thing, and occasional heartburn in healthy people is another matter, and those people may want to review this topic with their doctor if they question whether the side effects might be worse than the condition. For many people, sometimes including scleroderma patients as well, simple lifestyle changes might be all it really takes to put heartburn at bay, such as eating smaller meals, avoiding troublesome foods, elevating the head of the bed by about 4", eliminating alcohol and nicotine, or even not laying down or bending over within a few hours of meals. See our Hearburn resources for more ideas.


  10. Hi Dimarzio,

    That's an interesting question which I don't recall hearing before. My knee-jerk reaction was just like Jo's, that it probably wouldn't help and could make heartburn worse.

    However, I've found an article which said there was one study that showed chewing gum -- or anything -- for 30 minutes after a meal was good for heartburn, because it increased saliva production. See Gastroesophageal Reflux Disease by the University of Maryland Medical Center.
    Gastroesophageal reflux disease and heartburn

    That same article points out other risk factors for heartburn, including smoking, which increases acid production. So, maybe a one-two punch of chewing gum but not smoking after meals might help a bit. Interestingly though, even nicotine patches to quit smoking can cause heartburn.
    :hug-group:


  11. Hi Sandi,

     

    If your rheumatologist says you have scleroderma, and you have no reason to disagree with it, but your primary care doctor disagrees....then you need a new primary care doctor, pronto, as they could actually be hazardous to your health, not to mention your sanity. 

     

    When you establish care with a new doctor, be sure to bring records from your rheumatologist, so they aren't just taking your word for it.

     

    Please keep us posted on how things are going for you.

     

    :hug-group:


  12. Hi Sandybeach,

     

    How long have you had limited scleroderma?  If you have a new diagnosis, the stress of the adjustment period can cause fatigue. If you've had it for over a few years, and this is a new development, you should see your scleroderma expert to be sure that you don't have any new complications, such as inflammation or an underlying sleep disorder, or overlap of another condition, such as fibromyalgia.

     

    Sometimes fatigue can be relieved by antidepressants, not necessarily because you are depressed, but because many of them can also improve sleep and relieve pain. I've tried several antidepressants over the years, even though screenings for depression and mental health issues were negative. One I tried for bladder spasms, way back when, but it only succeeded in making me lots worse and no better.  Another one hugely relieved my fibromyalgia pain, but I then developed adverse side effects and had no choice but to wean off of it.

     

    So, just because a doctor is recommending antidepressants, don't assume it means he thinks you have depression. Unless he flat out says so. Also don't discount the fact that depression is a normal complication of chronic illnesses as we find ourselves less and less able to do normal activities. Do think back, and see if you can recall whether or not you are laughing and smiling and joking around as much as you did before your diagnosis. Do you basically feel happy and cheerful, and eager to have as much fun as your body will let you?

     

    Or, are you just languishing in your down time, laying in bed and worrying rather than reading a book or listening to beautiful music?  And, are you putting limits even on joyful activities, like grandkids, which I find worrisome that you refer to as "days", since I likely couldn't survive even an hour or two of little ones and the constant energy and attention most of them demand.

     

    As for not doing the shopping, two thumbs up for you!  I joyfully eliminate any activities that I do not find refreshing or challenging or fun. My time needs to be invested in sustaining my joy, and not depleting it. If I loved shopping, though, I would insist on doing it myself as much as possible!

     

    Maybe you're contemplating disability, or working part-time instead of full time. Sometimes that is an option with scleroderma, but that depends on your symptoms and their severity, too. If it's on your mind, be sure to discuss it with your doctor and lawyer before making *any* changes in your work schedule, so that you know what your legal rights and potential benefits are.

     

    Anyway, I hope you find ways to get the absolute most joy out of your life right now, with whatever energy you possess at any given moment.

     

    :hug-group:


  13. Hi Dimarzio,

     

    If moving around makes you feel better, by all means, do it! 

     

    On inclement days, perhaps you could watch and follow some arthritis exercise tapes, or get some indoor exercise equipment, or go to a nearby gym or warm pool. Exercising indoors is great, and doesn't have to cost a thing, nor even any equipment!  I often set the timer for however long I want to walk, and then just make loops through my place. It's a very small place, so I walk around mostly in tiny circles, but hey, it's a lot better than nothing.

     

    I also use simple things, like a soup can to do arm curls, or try to lift a cast iron pan. Look around your place, see how inventive you could get. Consider doing stretches while waiting for things to cook, or marching in place while brushing your teeth.  I always incorporate some simple stretches into my shower, as it is easier to move when the muscles are warmed up.

     

    Think outside the box to reclaim the activity that you are craving!  Why, you could even claim it as a new hobby!

     

    :hug-group:


  14. Hi Sharonjean,

     

    Welcome to Sclero Forums!  I'm so glad that you've found us. As part of our community, you never need to feel alone in dealing with the effects of scleroderma. Although each of us experience the illness differently, with varying symptoms and progression of various types of scleroderma, we all know how it is to have a health issue to cope with.  Here's a welcoming group hug, just for you:

     

    :hug-group:


  15. Hi Dimarzio,

     

    I'd be happy to try to answer some of these questions.

     

    Yes, I quit smoking.

    I quit smoking years before my Raynaud's or scleroderma was diagnosed, so the other questions are moot.

     

    However, I have personally witnessed smokers with scleroderma having their fingers, toes, hands, feet and even legs amputated, usually piece by piece. One of my friends had two fingers amputated before quitting smoking, and after that had no more amputations of any sort.

     

    When I was diagnosed with Raynaud's (after vascular lab testing), my doctor gave me a very stern lecture, saying that I must stay warm at all times, or I would risk gangrene and amputations. If I was smoking or drinking, I'm sure I would have gotten a far worse version of that lecture!

     

    However, in my experience, knowledge about smoking's harm doesn't do the smoker any good so far as quitting is concerned. After all, any good smoker is going to find that sort of news alarming, and then need to immediately calm their nerves, in the only fashion they really relate to at the moment, which is....to light up another one.  Same with drinking or any other addiction.

     

    I watched my mother have an entire lung removed due to cancer. She merrily continued smoking anyway, to calm herself down from the fright of cancer, of course. And so did I.  Obviously, none of us need a medical degree in order to read the Surgeon General's warning on each pack.  Take that warning, multiply it times 10 or 100, and you have the effect it can have on scleroderma, reading, fatal and often entirely unnecessary complications.

     

    That said, please do NOT expect that feedback to have any effect whatsoever on your desire or plans to quit.

     

    Quitting is usually successful if it is a positive decision, backed with positive intent, and a can-do attitude. Maybe some people could do it while wallowing in fear, but I found it impossible. I have yet to encounter a medical reason that I could/would emotionally respond to enough to have gotten me to quit. I'm sure a reasonable person could, but by definition, a reasonable person is not addicted to and still using their substance of choice.

     

    I think for a very long time, I wanted to think that I was trying to quit, but I wasn't willing to pay the price of actually quitting. I wanted the best of both worlds, for me and others to THINK that I was quitting, but to still fiercely hang onto the habit, and sooner or later (usually, sooner!) have another puff.

     

    That portion of my life was absolutely agony, in retrospect.  But it was what I had to go through to get to the other side, and I learned an awful lot about myself, and addiction, in the process. I'm just overwhelmingly relieved to be on the other side of that, and to no longer be a little puppet being dangled by the Nicotine Monster anymore. I'm FREE!!!  And I think only a former smoker, who was really good and dedicated to it, can understand how joyful it is to be free of the constant urges, desires, and feeling of not being in control.

     

    Maybe some day you can be free, too. But please don't expect mere input on the health dangers to be a key to any of it. If anything, those can be a reason to maintain the habit, in order to quell the associated anxiety that information can induce.

     

    :hug-group:


  16. Hi Dimarzio,

     

    Oh. my nicotine addiction also caused me to fall for the old "boredom" line. For decades, I'm ashamed to say.

     

    I know it sounds completely ridiculous to never-smokers, but I honestly had a terrible time just sitting idly, before I finally succeeded at quitting. 

     

    However, it was lots easier for me to figure out ways to defeat the boredom aspect, once I realized it was only my addiction speaking, and that smoking simply does not solve a boredom problem. Here's a site that explains it well:  Myth: Smoking Relieves Boredom.

     

    We have quite a Sclero Happy Dance thread starting here. I know you're not ready to make the leap for yourself yet, which is fine, but it'd be great for you to join in on the Happy Dance that I just started for Quiltfairy.  Who knows, with any luck, maybe someday we'll be able to throw one for you!

     

    :hug-group:


  17. Hi Quiltfairy,

     

    Major congratulations to you on your success in breathing pure fresh air, finding the positives in the situation, and making hay with new sewing equipment and such. I think that is simply marvelous, all the way around. You have turned it into a totally win/win/win situation!

     

    I think this is worthy of a great big Sclero Happy Dance!

     

    :happy-dance-line::jump-for-joy::happy-dance-line:  :hug-bear::happy-dance-line:


  18. Hi Dimarzio,

     

    If you are worried that your faintness could be pulmonary hypertension, you could ask to be evaluated for it.

     

    As it happens, I've had faintness for decades, due to orthostatic hypotension, which basically means that when I stand up, my blood pressure goes down (instead of up).  I'm also winded extremely easily and need to approach everything very slowly, but I do not have pulmonary hypertension.

     

    Fatigue is just part and parcel of scleroderma and many other autoimmune diseases. Unfortunately, the fatigue can also cause worry (like, to try to figure out what is causing it, or lamenting what we cannot do because of it) and then the anxiety can cause worsened fatigue!  It's quite a horrible catch-22, and one that all of us are vulnerable to. See Scleroderma Fatigue, which includes a video by Amanda Thorpe.

     

    Perhaps its possible -- and bear in mind that I am not a doctor and have no medical training at all! -- but I don't know anyone with pulmonary hypertension who could walk for an hour or two, with no problems. It is often hard to even pass a six-minute walking test with PAH. I should note here that the six minute walk test is a bit dicey with scleroderma, because we can flunk it without having PAH due to other systemic effects of scleroderma.

     

    What is absolutely fantastic is that you are actively researching your illness and learning everything you can about it!  The downside of that is that we can scare ourselves witless in the process, so I find it helpful to pursue ways to relax and deal with anxiety as being just as important as learning about scleroderma and its symptoms. Especially because our anxiety can worsen the disease process.

     

    Knowledge is power, but power can be used for good or evil. It's evil when it's worsening how we feel. It's great when its giving us reassurance (eventually) and confidence in our ability to work with our medical team, and our support system, to deal with this the best that we can.

     

    In the beginning, that can mean reading and freaking out, then seeking support and input, and calming down. Later on, we tend to skip over the freaking out portion faster and easier, especially as we gradually transition to focusing more on the happy and fun and even silly parts of our life.

     

    :hug-group:


  19. Hi Dimarzio,

     

    That's an interesting question you raise.

     

    As it happens, strangely enough, overall, systemic scleroderma has a higher mortality in people who are younger at onset, rather than older.  For more info on that see, Prognosis and Mortality in Systemic Sclerosis: Age at Onset.

     

    Of course, it's never a good illness to develop at any age, and there is always the caveat that scleroderma affects everyone differently.

     

    :hug-group:

×