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janey

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Posts posted by janey


  1. Types of Scleroderma Overview

     

    Types of scleroderma explained, major categories of Systemic Sclerosis, Diffuse, Limited/CREST, and Overlap, as well as Localized including morphea and linear. Presented by Isabella Ensz for the International Scleroderma Network. 08/10/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  2. I find this abstract interesting in that both my skeletal and cardiac muscle enzymes are monitored on a bi-monthly basis. The skeletal muscle enzymes (or CPK or CK) are monitored because of the overlap of scleroderma with polymyositis. The cardiac muscle enzymes (CPK-MB) are monitored because 6 years ago they were tested after I received my pacemaker and they were found to be elevated. Also, since I am in chronic atrial fibrillation, my heart muscle is taking a constant beating so to speak. :wacko: Over the years they have gone up and down but last month - for the first time in 6 years - they finally dropped to NORMAL! As a result, my rheumatologist was able to reduce my dose of immunosuppressant. So if you do have heart issues, you might want to ask your doctor about the CPK-MB. Just a thought.


  3. Jeannie - Your teachers did good!!!! :VeryHappy:

    Chopper - I'm going to ditto everything that has already been said! I've been on PPIs since 2003 and have been informed by both my GI doctor and rheumatologist that I will most likely be on them the rest of my life. The PPIs work great with heartburn as long I take them within 15 hours of each other. After 15 hours without a PPI, my stomach starts to burn - so needless to say - I don't forget.

    As Jeannie mentioned, the reflux possibility is always there. For me I have to be careful because, like so many of us, I have a hiatal hernia and the valve to the stomach has partially stiffened due to fibrosis that my stomach is somewhat exposed to the esophagus. So I am very careful with my diet, not overeating, and not eating at least 3 hours before going to bed. I sleep with a wedge and 4 pillows, so reflux isn't a problem.

    Wish there were better news! I know how much we all want to just stop taking medications, but...many of us wouldn't be here today without them.


  4. Susieq,

     

    I hope the treatment went well yesterday and are going well today. I'm sorry I missed your post and didn't get this to earlier. I do my IVIg in 3 days and there are a couple of things I always make sure I have to relax me. One is music! I set my ipod up with some very relaxing music that I love, put the earphones in, push the recliner back, close my eyes, and let everything that is going around me dissolve away. I'll also have a book to read that I'm really, really into and that I'm just dying to finish. These two things make the time go by and I stay relaxed. I also catch up on sleep because I always fall asleep when listening to the music - which is a good thing.

     

    Also, be on top of how they are administering the infusion! They should start off slow everyday, not just the first day. My nurse starts at 25 (ml/min?) and steps up another 25 every 30 minutes to a maximum flow rate of 180.

     

    The only side effect I get is a massive headache 24 hours after the 3rd day. Once it hits, I go to bed for 24 hours, my husband brings me my meds and I sleep. When I get up 24 hours later, it's gone and life is good.

     

    Please let us know how the infusions went and how you are doing. You're in my thoughts Darlin!


  5. Scleroderma Ulcers Treatment.

     

    In general, the treatment of scleroderma ulcers should be multi-faceted. It should include non-pharmacological and pharmacological measures. Antibiotics should be used judiciously. Dr. Ido Weinberg, Vascular Medicine. 07/05/11. (Also see: Digital Ulcers)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  6. Lots of great music listed above!!!! I, too, like Madeleine Peyroux and Leonard Cohen, some jazz (not a fan of contemporary jazz), just about any blues, 70's rock, in fact - pretty much all of the 70's music, Robert Plant and the Band of Joy. Gnarls Barkley, KD Lang, and let's not forget MoTown. There are many, many others.

    Great thread miocean!


  7. Pain Perspective in Scleroderma.

     

    The role of the nurse practitioner/physician assistant is integral in assessing the various components of disability and pain experienced by the scleroderma patient. Susan L. Williams Judge, MN, ARNP. The Rheumatologist, July 2011. (Also see: Pain and Physician/Patient Relations)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  8. Homeopathy, non-specific effects and good medicine.

     

    Modern mainstream medicine frequently seems to neglect the importance of medical core values such as empathy, sympathy, time, understanding and holism. Editorial. Edzard Ernst. Rheumatology (2011) 50 (6): 1007-1008. (Also see: Alternative Treatments)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  9. Molly,

     

    Welcome to the Sclero Forums! I'm sorry to hear that you were diagnosed with scleroderma and PH on the same day! But the good news with that is they probably caught the PH early with is definitely a good thing. I've been on Tracleer for almost 5 years. I was started at full dose of 125 mg - twice a day, but when my pulmonary artery pressure dropped enough (within 1.5 years of starting Tracleer), my dosage was reduced to 62.5 mg - twice a day. I have had no side effects that I know of other than a GOOD side effect - my Raynaud's isn't near as bad as it use to be! As Craig mentioned it is important to get your liver function checked monthly because it can cause liver damage. With that said - after 5 years on this medication my liver enzymes still show a very healthy liver.

     

    There are some medications that you can not take with it, so be sure to have a good discussing with the pharmacist - not the doctor. I actually had to stop my rheumatologist from putting me on cyclosporine A because you can't take that with Tracleer. He was not aware of it, but looked it up and saw I was right. Also, if you take iron supplements, you shouldn't take iron within an hour of taking the Tracleer. Just a couple of things that I've learned while taking this med. I'm sure you'll do just fine with it. If you explore the abstracts at the links that Jo and Amanda provided you'll learn more about it. The good news is that it has been shown to be effective!!!

     

    Let us know how you are doing. Again, welcome!


  10. Georgie,

     

    Some studies have found a link between cancer and scleroderma even though more studies need to be done and more data collected. You could check out our Cancer and Scleroderma section.

     

    My understanding is that with scleroderma our immune system is too fast, but, others have said, it works in reverse. Instead of fighting disease it actually attacks are tissues and increases inflammation in our bodies. Please do not think you can't catch a cold because you can and it can be dangerous. If you are on immune suppressing drugs, than your body doesn't fight disease very well. Once year I caught a cold and ended up in the hospital on a respiratory. So yes - we can and do get sick if we don't take care of ourselves and avoid exposure to people who are sick. So please don't let your guard down.


  11. EmpowHER Launches Joint Health Resource Page.

     

    Joint protection is vital in maximizing mobility and minimizing joint deterioration over time. To make it easier for women to learn how to keep their joints healthy and strong, EmpowHER, an award-winning women's health media company, has launched a free Joint Health resource page to highlight preventative care, treatments and facts surrounding joint care. EmpowHER. 07/07/11. (Also see: Hand and Joint Involvement)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  12. Eye Problems – Prevalence Of Eye Disorders Among Baby Boomers Feared.

     

    The population is not only aging but also growing- increasing the cases of dry eye syndrome just from the sheer numbers. The US population will add 50 million people by 2030 and about 4 million of these will have dry eyes. Matthew Bennett. Star Global Tribune. 06/28/11. (Also see: Dry Eye and Eye Involvement)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  13. Having been around 3 dogs for the long weekend, I can now imagine yours jumping up and down grabbing those bits of carrots. Have you ever tried playing croquette with 3 dogs? We attempted a game but every time we hit a ball, one or all of the dogs would chase after it, grab and drop it in all sorts of places. Needless to say, we never finished the game but had a BALL!!!! :D


  14. EULAR 2011 - Vidofludimus Superior to Cyclophosphamide (CYC) and MMF (cellcept) in an Experimental Systemic Lupus Erythematosus (SLE) Model.

     

    Vidofludimus was as effective as CYC and MMF in inhibiting progression parameters of renal disease. Furthermore, vidofludimus improved activity and chronicity indices, markers of renal inflammation. Business Wire. 05/27/11. (Also see: Lupus)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  15. Type 1 Diabetes Intervention Trial Results a Mixed Bag.

     

    "We’re testing things in new-onset type 1 diabetes to see whether or not they modify the course of the disease, and to gain insights as to which ones are safe enough to take into prevention studies. ... The field is in a state of flux at the moment," (Dr. Jay S. Skyler). Marian E. Tucker. Internal Medicine News. 06/30/11. (Also see: Diabetes Treatments)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  16. Gizelle,

    I'm going to jump in here and third Craig and Shelley. I have polymyositis overlap with scleroderma. Both are connective tissue diseases, therefore, many people do get the overlap. The symptoms of my poly were the weak arms and legs. It was difficult to wash my hair because my arms got so tired and doing stairs become almost impossible. Depending on the height of the chair, I sometimes needed help to get up. So if these symptoms sound familiar, please have your doctor check your CK, also called CPK. These are your skeletal muscle enzymes and if high, it is a strong indicator of polymyositis because it indicates muscle inflammation. It is just a simple bloodtest, but can tell you a lot.

     

    Please let us know how you are doing and if you do find out the cause of your new symptoms.

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