Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 - Usually Mayo's consultation will be covered IF she can get a referral from a doctor. That was required from mine- you had to pay if you went on your own. MAYO is ranked first in the country for its rheumatology program. Scleraderma is considered an auto -immune rheumatic disease. It is sad but interesting to hear of your brothers problem. My dad and an aunt both had leukemia and like me you also have RA. Hang in there. Listen to the words of wisdom concerning the hairdresser. I am certain Mayo could help your SIL. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 , I am sorry to hear that your sil may have scleroderma. Here's a few links that will help you understand it. Here's a fact sheet from the Scleroderma Foundation: http://www.scleroderma.org/fact.html Common antibiotic knocks out rare skin disease http://www.rheumatic.org/sdtrial.htm I read the list for the antibiotic protocol and many scleraderma patients are having great luck with antibiotics. I would read this site! The Facts About Scleroderma - A list of facts from the Scleroderma Research Foundation. http://www.srfcure.org/scl_facts.html Gastrointestinal Involvement - Gives a general overview of how Scleroderma affects the gastrointestinal functions, such as reflux, heartburn, dysphagia, diarrhea, irritable bowel syndrome, esophagitis and related treatments for GI involvement. http://sclerodermasupport.com/medical/topic/gastro/index.htm Scleroderma - Explains scleroderma as a chronic autoimmune disease that involves the skin and connective tissue, and then gives a brief explanation of the types of scleroderma. http://www.aarda.org/page43.html Scleroderma - This fact sheet explains the cause, diagnosis and treatment of Scleroderma. http://www.rheumatology.org/patients/factsheet/scler.html http://www.srfcure.org/ Scleroderma Research Foundation Web Site http://sclerodermagw.org/Scleroderma Foundation Greater Washington DC This page has many links to personal stories. http://www.healthlinkusa.com/273.html I hope these help. a ----- Original Message ----- From: <ANJILLAH@...> <RA-supportegroups> Sent: Thursday, January 04, 2001 6:03 PM Subject: [ ] Scleroderma > > Dear and/or a, and/or anyone: > Please help me to get some answers to this problem of my sis-in-law's. June, > My sil has always been healthy. She used to run every morning 5 miles till > recently. I believe she has scleroderma. I know there are two kinds. One > effects the hands and the other is systemic. We are not sure which one she > has. I think it is systemic since she now has very bad shortness of breath. > The Doctor even put her on oxygen at home. I think it is all connected. She > thinks she has something else besides the scleroderma like sarcoidosis. The > Doctor, (a lung specialist) is calling it ideopathic lung disease. Which she > feel is a different diagnosis. Which just means he doesn't know what it is > or what it is from. I am very upset about her. She has been a close friend > to me through all the tragedies in the family besides being my s-i-l. > I am so worried about her. She is alone. I think some of you know I lost my > brother in 91 due to Leukemia. We all pulled together to get through that. > I have heard that there are people that can survive this illness but a lot of > info in diferent books isn't all that positive. I heard use of homeopathy > and herbal products can help, but she won't hear of that. She told me that > this Dr. told her she has 4-5 years to live. How he could tell her that when > all the tests are not in and he doesn't really have a diagnosis. She is > supposed to get an answer on an MRI on Monday. > Anyway, I would appreciate any help with this problem. Does anyone know of > anyone who has it or had it. Can someone give me some first hand info. Even > some info somewhere else in the internet. I looked up scleroderma in the pc > and didn't get too much. a, , or anyone please can you give me > something about this that you might know. Something to help I hope. > I love my sister-in-law very much. She is the only sister I ever had. I > told want to loose her too. > Sincerely, Colletti > Anjillah@... > PS: June lives in Orange Park, outside of ville, in Florida. I know > the Mayo Clinic is there. I wishe I could get her to go there but she says > her insurance doesn't cover it. I wonder if they would see her on > consulation. I wonder if they are very expensive. Does anyone know? > Thankyoul > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Change subscription options: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 June, You are very welcome. I hope they help her. a ----- Original Message ----- From: JUNE <juner24@...> onelist < egroups> Sent: Friday, January 05, 2001 3:07 PM Subject: [ ] Scleroderma > a,great articles on Scleroderma. They answer every question anyone > may have about this disease. I am printing out some to give to my > hairdresser. Thanks again. > > Hugs > June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Scleroderma is a rheumatic disease we should all be aware of. and I discussed her sister-in-law's situation privately, but there are a few things about scleroderma and June's experience that I wish to highlight. I believe that the most frightening aspect of this whole story is not the possibility that June may have scleroderma or sarcoidosis, but that her physician would tell her that she has four or five years to live. That death sentence is wholly inappropriate. Even if all testing had been done, results analyzed, and a diagnosis made, I would argue that a physician cannot know this and does his or her patient a grave disservice by making such an irresponsible statement. Dr. Maureen Mayes, rheumatologist and an authority on scleroderma, writes in her " The Scleroderma Book " (1999, Oxford University Press): " Scleroderma has such a variable course from one person to the next that it is very difficult to predict what will happen to any individual patient. The course varies from mild disease in some cases to severe disease in others. Sometimes people who start out with very active and progressive disease reach a plateau and then slowly improve and do well in the long run ... For the most part, I no longer try to predict a patient's outcome. I treat the disease as it currently exists. " I know someone who was given a judgment similar to June's. She is struggling to get a diagnosis. The most likely outcomes at the moment are lupus or multiple sclerosis. One physician she saw for a second opinion declared on the first visit, after looking at her medical record, that she had lupus and that she had ten years to live. She cried after his announcement. Because she cried, this man claimed that she was obviously depressed, too, and recommended Prozac. Luckily, she chose not to see that doctor anymore. I urge you to leave any physician who practices medicine in this fashion. From the Greek, scleroderma means " hard skin " or " thick skin, " depending on the translation. The disease is also referred to as systemic sclerosis. There are two forms of scleroderma: systemic and localized. In systemic disease, the illness affects the internal systems and organs as well as the skin; the localized form of the disease is confined to the skin only. Systemic sclerosis is rarer than lupus and, like lupus, is not well understood, is often misdiagnosed, and is perceived to be more deadly than it really is. Both disorders have a wide range of symptoms and much variability in the course of the illness from patient to patient. One symptom that is nearly universal in scleroderma patients who have the systemic form of the disease is Raynaud's Phenomenon. When our list member, June, described her hairdresser's fingers as sometimes turning purple, especially in cold weather, she was describing Raynaud's. Raynaud's Phenomenon is a vascular disturbance which causes the small blood vessels to narrow, very notably in the fingers. Thus, the blood supply to the fingers is diminished and they may turn blue, purple, or white in cold weather or in response to stress or mechanical trauma. The same can happen to the toes. In very serious cases, this can lead to digit ulceration and gangrene. a sent a very comprehensive group of links on scleroderma where you can learn much more about the disease. Mayes' book, which I mentioned above and is designed for scleroderma patients and their families, is excellent. I also own a physician's book on scleroderma entitled " Systemic Sclerosis " edited by Philip Clements and Furst (1996, and Wilkins). It is outstanding. Yes, scleroderma is another one of these awful rheumatic diseases, the cause and cure being unknown, but more effective treatments are being developed and implemented continuously. We are making progress. There is much hope. ----- Original Message ----- From: <ANJILLAH@...> <RA-supportegroups> Sent: Thursday, January 04, 2001 5:03 PM Subject: [ ] Scleroderma > > Dear and/or a, and/or anyone: > Please help me to get some answers to this problem of my sis-in-law's. June, > My sil has always been healthy. She used to run every morning 5 miles till > recently. I believe she has scleroderma. I know there are two kinds. One > effects the hands and the other is systemic. We are not sure which one she > has. I think it is systemic since she now has very bad shortness of breath. > The Doctor even put her on oxygen at home. I think it is all connected. She > thinks she has something else besides the scleroderma like sarcoidosis. The > Doctor, (a lung specialist) is calling it ideopathic lung disease. Which she > feel is a different diagnosis. Which just means he doesn't know what it is > or what it is from. I am very upset about her. She has been a close friend > to me through all the tragedies in the family besides being my s-i-l. > I am so worried about her. She is alone. I think some of you know I lost my > brother in 91 due to Leukemia. We all pulled together to get through that. > I have heard that there are people that can survive this illness but a lot of > info in diferent books isn't all that positive. I heard use of homeopathy > and herbal products can help, but she won't hear of that. She told me that > this Dr. told her she has 4-5 years to live. How he could tell her that when > all the tests are not in and he doesn't really have a diagnosis. She is > supposed to get an answer on an MRI on Monday. > Anyway, I would appreciate any help with this problem. Does anyone know of > anyone who has it or had it. Can someone give me some first hand info. Even > some info somewhere else in the internet. I looked up scleroderma in the pc > and didn't get too much. a, , or anyone please can you give me > something about this that you might know. Something to help I hope. > I love my sister-in-law very much. She is the only sister I ever had. I > told want to loose her too. > Sincerely, Colletti > Anjillah@... > PS: June lives in Orange Park, outside of ville, in Florida. I know > the Mayo Clinic is there. I wishe I could get her to go there but she says > her insurance doesn't cover it. I wonder if they would see her on > consulation. I wonder if they are very expensive. Does anyone know? > Thankyoul Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 You're very welcome, . Sorry it took me so long. ----- Original Message ----- From: <ANJILLAH@...> <RA-Supportegroups> Sent: Monday, January 08, 2001 2:03 PM Subject: [ ] Scleroderma > Dear : > Thankyou for your very informative letter to the group. I am glad you wrote > all of that. I emailed it to my s-i-l too. > Thank so very much. > Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 , Thanks for such an informative post about this misunderstood disease. I particularly like what you said about dumping a doctor that gives you no hope. My first rheumy told me if I got pregnant, I would die. I never went back to him. I had 2 children, and I'm not an angel a ----- Original Message ----- From: Matsumura <Matsumura_Clan@...> < egroups> Sent: Monday, January 08, 2001 2:29 AM Subject: Re: [ ] Scleroderma > Scleroderma is a rheumatic disease we should all be aware of. and I > discussed her sister-in-law's situation privately, but there are a few > things about scleroderma and June's experience that I wish to highlight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2011 Report Share Posted February 25, 2011 Thank you for sharing this Lottie...very interesting stuff. We all know these medicines work all over our body because We deal with the side effects. Maybe we're getting some " protection " from some of these other diseases as an extra bonus? (Wouldn't that be nice!) BethG [ ] scleroderma  Dear Beth, This has been in a clinical trial for some time and this is updated as of June, 2010. I suppose that Gleevec is approved for this trial, since it has already been approved by FDA for other diseases, even alzheimer's. Is there no end to what this miraculous drug will do? Makes you wonder how all of these diseases being treated with Gleevec are connected???? I hope it works for your friend's mother. One more notch in the Gleevec dossier. I hasten to add that Sprycel is also being used for another disease for which I am at a loss to tell you at this moment. As more research is being done, there will be more diseases being treated by off label drugs not originally intended for the disease. They are called " orphan diseases " for which there are no specific therapies for it. I found this at a clinical trial website. I would certain welcome any discourse someone else would have. Thank you for your reply to the original post. " This is a Phase IIa, single center, prospective open label clinical trial of Gleevec in patients with systemic sclerosis. All patients will be treated with active drug for 12 months. The primary objective of this study will be to determine the safety and tolerability of Gleevec in patients with systemic sclerosis, but important secondary outcomes of relevance will be improvement in disease status as defined by skin scores and indices of pulmonary function. " *********** I found another use for Gleevec: " Dermatofibrosarcoma protuberans (DFSP), a type of cancer (sarcoma) in which cells in the tissue beneath the skin divide uncontrollably. Glivec is used to treat adults with DFSP that cannot be removed with surgery, and in adults who are not eligible for surgery when the cancer has returned after treatment or has spread to other parts of the body. " http://tinyurl.com/457w9bw ******************** FYI, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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