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  1. Hello. I am a female and 62 years old. I recently had a positive ANA and am just looking for information while waiting 3 months before I can see the rheumatologist. My ANA was 1:32 and in the comments it says anti-centromere pattern observed. A few of my search results lead me here, so I joined hoping to learn as much as possible. Two years ago my dermatologist requested that I have an ANA test because of the (as she described it) "red butterfly rash" on my face. I thought I had rosacea, but she said it is not. I tested negative. At the follow up visit she told me that did not mean I do not have Lupus, and wanted me to have another test in 6 months. 2 years later and the rash no longer comes and goes, it seems it is here to stay. She also says other signs she is seeing on my skin, hair, and nails may also point to Lupus. I have other symptoms on the Lupus list, but had explained them away with possible other causes. Because of the anti-centromere pattern comment on my report, I have researched the symptoms of CREST and Scleroderma. I do not have any of the listed symptoms other than achy joints and muscles, and tiredness. Reading many threads here, I understand that definitive answers may be a long way down the road. I am sure the Rheumatologist will order additional tests that will hopefully provide a little more insight. Since my doctor and dermatologist seem to think I have Lupus, I am wondering how the anti-centromere pattern fits into that diagnosis. Your input and words of wisdom are appreciated.
  2. Hello, I am new to this forum. I’ve had Systemic Lupus Erythematosus (SLE) for over a decade, but was recently diagnosed with systemic sclerosis. FYI: Prior to “starting a new topic” I ran a search on “lupus SLE and sceloderma overlap” and it came up with zero results. Wondering if anyone out there is in the same predicament. Thank you in advance for any input.
  3. I wonder here how many people some days feel like they are getting the flu with SD? My story, some days, I get really aching all over and feel like I am getting the flu. Then the next day it goes away. A SD doctor told me this is common, and she explained it was not just people with SD, but all diseases in this category. Anyone else experience this? I have it today, but hoping it goes away tomorrow, or else it could be the flu.
  4. Hello everyone, I am extremely new to this site as just received the diagnosis of systemic scleroderma last week. I have had medical issues my entire 59 years of life with many diagnoses only to have the diagnosis reversed. I have been told Lupus, MS, RA. This last diagnosis came after 4 years of extreme inflammation in both arms and legs. Some days, just getting dressed is impossible. I have been told my liver, lungs, cardio are all involved. I am scared, unable to find work that will accommodate the physical conditions and not sure what to do as I am separated and husband can cancel insurance at anytime. There is no specialist within a reasonable travel time for me and I wonder what is in store now.
  5. Hello, my mother passed away from systemic scleroderma. I wanted to ask what kind of tests I need to do for myself and what kind of doctor should I visit, is it a dermatologist? Thanks everyone in advance.
  6. My toes are cold and sore most of the time and they have a tendency to get sores. Our little dime store here in town had toesy socks for 1 dollar, so I tried them; my sore toes no longer rub against other toes, cutting down on pain in my feet and the sores heal a lot faster I even wear them to bed; also when it is cold outside I put a regular pair of socks over the top of my toes which keeps them stay toasty warm. I send out good thoughts to everyone.
  7. I have always liked fresh fruit, but having no teeth that is hard, but most food can be gummed enough to swallow. As this blank blank disease goes forward I have more trouble getting food down my throat. I was given a bag of blueberries; I looked at them and gave a look at my blender. I put the berries in the blender, added a little sugar and made a juice out of them. I still have cherries, so I am off to the kitchen. Yummy yum yum.
  8. Impact of Radiation Therapy on Scleroderma and Cancer Outcomes in Scleroderma Patients with Breast Cancer. These data suggest that radiation injury causing local tissue fibrosis is not inevitable in SSc patients with breast cancer, occurring in 50% of cases without evidence of lung or generalized skin disease flare. PubMed, Arthritis Care Res (Hoboken), 01/05/2018. (Also see Cancer and Radiation and Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. For about two weeks I had a migraine that just would not quit. There was a lot of stress going on our family; there were 4 deaths of older aunts and uncles. One was expected, the others yes and no and so I thought that was causing the migraines. To my surprise that is not the cause of the migraines; just before bed I started coughing and choking and on the last choke out came a hard thing. That looked like one of my pills and that is what it was! It was covered with phlegm, so it had been there quite a long time and must have been sitting on a nerve. Migraines are gone!
  10. I seem to be dropping a lot of stuff lately; anything from dishes to tablets to cell phones. Of course my husky likes it when I drop stuff that has food in it; that part is ok as she is a good floor cleaner. It is getting expensive buying cell phones and computer. On line stores seem to like it; it's 40 miles to the nearest store to buy those items and of course I buy refurbished and that has been a experience all its own. I hope I can get some help with this, please.
  11. I was thinking about the items I make that help me through the day and maybe I could post the patterns with step by step instructions. Also others could post what helps them to make it through. If this is not acceptable, please let me know. Thank you and I send out my blessings to everyone.
  12. Hi all, I'm new to this forum. I'm a 25 year old male currently in a graduate program in NY. For the past several years I've had cold sweaty/clammy extremities (e.g., feet, hands, nose, knees), with blotchy discoloration. This is rather persistent, and I never really questioned it. A few winters ago, I noticed my hands looked red and irritated (with raised bumps, mildly itchy). I was initially told I had a skin reaction, but after the same thing happened the following winter, my primary care physician assumed it was Raynaud's Phenomenon (RP) . About a month ago, I noticed the same kind of blotchy bumps and went to see my primary care physician, once again, who said it was RP. Out of expressed concern, they ordered an ANA (IFA) test for me. It came back negative, however before I got this result, I booked a follow up with a rheumatologist. When I went in, I gave her my description of my hands in the cold: I have rather persistent discoloration: red hands, without CLEAR cutoff/pallor or phasic shifting. I do however have pretty persistent blanching in all of the area that I previously mentioned that extend to my whole hands (not only fingers), knees and feet, with sluggish blood return. I must say again I've never really had "episodic" reactions to cold, just persistent (possibly acrocyanosis). After discussing the discoloration, I also told her that the nailfolds on my hands are regularly red. She looked at them through a magnifying glass and concluded they were dilated, but no dropouts. Not sure if this could manifest with general poor circulation/acrocyanosis? Because of the nailfolds she ordered several other tests and an ENA: kidney functioning through urine analysis C4 & C3 Sedimentation CRP, SS-A SS-B SM RNP SCL-70 JOL All came back negative/normal except for a SLIGHTLY lower C3 (88mgdl) in normal range of 90-180 Mg/dl and a C4 at 15 in normal range of 10-40 (technically normal range, but seems on low end) Just curious if there are any other blood tests that were missed that may eludicate the conditions of my hands. Again, I don't have any "frank" pain or really specific issues besides cold blotchy hands & reddened nail cuticles. My skin, as a matter of fact, has always been rather elastic, however, "I noticed" that the index finger on my left hand feels a little different than the index finger on my right (non-dominant hand) could just be difference in skin by nondominant-dominant? Obviously, I'm extremely anxious about my health and suffer from rather debilitating Hypochondriasis from time to time, so I'm very sorry for this tirade and if I'm being in any way insensitive. I'm just curious if there are any other things I can do to figure out whats going on with my hands. I'm also curious if my chronic anxiety (that I've had since I was 8) has something to do with sympathetic NS issues that may be causing this.. Thank you for your time. -Kellen
  13. Hello All, Any experience with benefits of Gluten free diet in managing scleroderma?
  14. Hi I'm new to the forum. I don't have this disorder but a very close friend does and it has done a lot of damage over the years mainly to her stomach and digestive system. A while ago she was diagnosed with ground glass nodules on her lungs which recently turned cancerous. The doctors are unsure how each treatment option will effect her with this disorder as they have never treated anyone with this before. I came here on the off chance of finding someone else might have been treated for similar or if there's any specialists with a specific interest in scleroderma. Hope it's okay to join on her behalf, as she's not too confident on the Internet, but I will hopefully get her joined up soon and have her up and running. Yours gratefully, Lesley.
  15. Is it possible to get or have scleroderma and the Mutation of my gene MTHFR? I have the mutated gene and I am now showing small signs of calcification in my right pinky; aka scleroderma according to my Dr. Anyone else have this? Not getting much from my Dr on how bad this could get and I am scared.
  16. Hello, I have been experiencing Alopecia for approximately 8 years and receive treatment through injections. Over the past few months, I have been experiencing significant stress and have been overwhelmed. About 2 months ago, I started noticing a dent on the right side of my forehead. It starts about a inch into my hairline and goes down to just over the arch of my eyebrow. It has been increasingly more noticeable and has become deeper over time. It is extremely noticeable and distracting. I thought this was strange, but after reading about scleroderma and the possible symptoms, I'm beginning to think that this is what was happening to me. I have noticed that there is a lot of pressure throughout my scalp and I have been getting many brain shocks, where its is like a chill going through just my scalp. I'm really concerned, and want to get to the bottom of this. I have a few questions: Is Scleroderma connected to autoimmune diseases, such as Alopecia? Since I have one autoimmune disease, is it possible I am more susceptible? Any advice on how to stop these uncomfortable feelings on my scalp? Anything I can do to get rid of the dent or stop it from getting worse? Thank you!
  17. Systematic autoantigen analysis identifies a distinct subtype of scleroderma with coincident cancer. Strong evidence was found for both intra and intermolecular epitope spreading in patients with RNA polymerase III (POLR3) and the minor spliceosome specificities. PNAS, 11/07/2016. (Also see Antibodies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. Hi everyone, my name is Ben, and I've had a dark orange colored rash that is dots surrounding my nipple on my chest and that goes around to my back. I have a lot of things that can be linked to autoimmune disease. And I am very scared of that, but also there are so many questions I have about this condition. Maybe some of you guys can help clarify things for me? 1)I know I am young to be using collagen, but I actually do put it on my face. It has other moisturizers in it. And I am scared that it may cause it to come back on my face. Mine is currently on my chest and is probably my only physical insecurity. I heard it can deform people so I would die if it came back on my face. Does anyone that has morphea also use collagen? I heard that the cause may be an overproduction of collagen so should I stop using collagen on my face? 2)My dermatologist said it is very unlikely that it will occur any place else. I noticed the "rash" when I was like 7, but just went to a real dermatologist to get it checked. I was misdiagnosed as having tinea versicolor. She said it looks like a confetti-type localized scleroderma and said that it was morphea. Does this sound accurate? It looks like orange colored dots surrounding my nipple and going around to my back. I don't feel an indent or anything. It's just like a discoloration of skin. I've had it for as long as I can remember, so I don't remember if it felt hard when I first got it because it has been so long. No tinea versciolor treatment(ointment or medication) or home remedy has ever worked on this. It has burned my skin extremely badly. But she is a CHILDREN's dermatologist, said that it was morphea and linear scleroderma, the explanation kind of sounded all over the place. She said it is indented but I didn't notice an indent. Also we had trouble finding pictures that looked similar to mine. Should I get a 2nd opinion? 3)I am planning to hopefully get laser done on this when I'm older. I am not a usually insecure person, but it has stopped me from going swimming. I tell people that it's a birth mark so they will understand, but I'm always worried people will think its catchy. Even I thought it was for years when I had no idea what it really was. Is there any waterproof makeup that you guys could suggest for this?
  19. Hello all! I'm new to this forum. I had a stem cell transplant as treatment for a blood cancer) almost three years ago and have Graft versus Host Disease (GvHD) affecting various parts of my body, including scleroderma. As far as I know, it is pretty much the same as scleroderma that is not part of GvHD. So far, it is quite mild and has not affected the external skin or internal organs, only internal soft tissue (tendons and muscles), meaning I find it hard/uncomfortable to flex my limbs - walking fast, taking clothing on and off, sitting on the floor, cross-legged, etc. are all difficult. I am being treated with ECP (extracorporeal photopheresis) and now weaned down to only 7mg Prednisalone a day. I'm at Nottingham City Hospital (Haematology, rather than Rheumatology, due to the blood cancer). I had noticed some joint aching (elbows and knees) on waking first thing, while still in bed, but usually that disappeared once I was up and moving. But yesterday, I went on my bike for the first time this year, after a long period of not cycling at all. While my legs were fine, I had a lot of aching in my elbows very soon into my ride - less than a couple of miles, maybe even after a few hundred metres - I can't quite recall. It bothered me as I really want to get back into cycling, but if I experience that each time I cycle, I won't want to. I've yet to raise it with my consultant, but just wondered if this is common and what people use to lessen it? I saw somewhere that swimming might help. Any other ideas welcome. Thanks Jet
  20. Hello I am new to this forum and would like some advice on taking Mycophenolate Mofetil. I am a 70 year old non smoker and drinker and have always been fit and active. I was diagnosed with Scleroderma and Raynauds four years ago and have been having regular hospital check ups ever since. Also to complicate things I had a colostomy a few years ago due to a fistula between my bowel and bladder. At my latest hospital visit this past week my consultant suggested that I start taking Mycophenolate Mofetil but I will not be seeing my general practitioner till early in the new year so won't be starting till then. I was therefore wondering if anyone who is on this drug can give me some information on how they are dealing with it as I am a bit nervous of some of the possible side effects. This is due to the scarring of my lung and lung function getting slightly worse.
  21. For the last few years, I've experienced periods where I just don't feel well and have a low-grade fever, and experience extreme exhaustion. These usually last 2-4 weeks at a time. I never paid much attention to them. This past August, my TMJ flared up badly resulting in my jaw moving out of place. My dentist prescribed a max dosage of ibuprofen for as long as necessary, and even though I disagreed, I didn't know what else to do. Fast forward a few weeks to ankles swelling, canker sores, and another episode of feeling off with a fever. The ibuprofen never touched the fever, either. When I developed petechia on my legs and feet, I was sent to the ER. They couldn't find anything, but told me to stop taking the ibuprofen and sent me to an internist for possible autoimmune issues. After extensive blood tests, I was immediately taken off Simvastatin for my high cholesterol as there were problems with my liver. After an ultrasound and further blood work, all returned to normal. But the tests results also came back positive for Limited Scleroderma. The Scl-70 was negative, but everything else was positive. I was referred to a rheumatologist but the wait was 4 months to get in. I called one afternoon in October to see how long it might really be, and they had just had a cancellation and took me in. She said I don't have Scleroderma at this point, even though I tested positive. I was put on Plaquenil to stop whatever was happening from developing further. I have another appointment in 3 months. Since then, I've noticed changes but I don't know if they're related. I itch everywhere most of the time. I started taking Allegra D daily which seems to help a lot. I still itch but not nearly as bad. My fingers have started swelling in the morning, but it goes away as the day goes on. If I sit for more than 30 minutes, I am incredibly stiff when I get up. It takes a few minutes for it to go away and I have to walk stooped over in the meantime while it works its way out. My right heel has become extremely tender and painful. According to Google, it could be Achilles tendonitis but I don't exercise, "pump bump" but I only wear flats, or possibly a result of scleroderma. My skin is fine, although I do have a few very small spots that have no pigment. I guess my question is, are any of these things symptoms of early-stage Scleroderma? If I don't have Scleroderma, what do I have? What is the diagnosis for the exhaustion and low-grade fever? Is there such a thing as autoimmune disease without a specific diagnosis? I'm just pretty confused. Thanks for any thoughts or advice.
  22. Hi, I was just recently introduced to the sclero community. My ten year old sister, Hope, has been diagnosed in the last year. She is currently working with her doctor to find a treatment method. This is all new to our family and we are still learning about a lot of the struggles that come with this diagnosis. We are now looking into the correlation between her medication (Singulair) and her diagnosis. Is there anyone who has taken singulair and was diagnosed with sclero? Would you be willing to talk with me? As I said, my family is still new to this diagnosis and are researching and trying to learn as much as we can to help her. Thank you to anyone willing to discuss this with me.
  23. I hate this disease. I know it could be worse. I know it's better than being 6 feet under. But I still hate it. It's confusing, overwhelming, effects too many areas, hard to figure out. Outside of that, I do have some decent news. I finally was accepted in to the office of Dr. Maureen Mayes. I have an apt. end of March. I have my first pulmonary apt January 29th. They ordered a high res CT scan, pulmonary function test. I had already supplied a CT angiogram that the hospital did when I went in for other heart/chest pain issue. That CT angiogram showed 6 nodes (all 4mm and under), but just 9 months earlier I had CT angio scan that only showed one node (4mm). I am not sure what to think about those developments, but my primary practice doctor assured me it was fine and probably nothing out of the ordinary (said maybe I inhaled something and that CT's show every little detail). Couple of questions: When I sleep heavy (most nights), I wake up and take a few deep breaths and feel this low deep rumble. Then it clears up after I take those initial deep breaths. But I have had what I think is random pleurisy type pains come and go over a long period of time. I also started having reflux problem this past 6 months (thank you limited systemic scleroderma). I have had a few bad colds and notice that the drainage has made me do this weird cough choke thing sometimes. Like I am unable to cough up the quick drainage so I kind of start choking on it? Does that seem weird or familiar to anyone else? Maybe even feeling like I aspirate as I am trying to cough up stuff. I feel like this all seems weird and it's just me, nothing related to scleroderma. I continue to have crazy strong Raynaud's on full hands and feet. I started taking amlodipine for the irregular heart stuff, but it's supposed to take edge off Raynaud's. Don't even know what to think about the heart issues. I see a cardiologist now but I was fine over a year ago, and now I have a tiny LBBB and a small leaky valve. I get very slow heart rates (down to the 40's-50's, not the least bit athletic) and sometimes very pronounced heart beats. Like my whole upper body feels such heavy pound with each beat, but not like a palpitation - more like a slow motion. Dumb, I know - but it's annoying and no clue why it does this. I get short of breath going up any hill or stairs, with legs that burn. Attribute that to just feeling out of shape, even though I am in my 30's and not overweight or underweight. When I swallow sometimes I feel each drink and bite of food pass by a sore spot on the right side of my lower esophagus. It's always the same spot , but so far it happens on random days for the full day. I had an Upper GI a while back and nothing showed up except a Telangiectasia looking red spot. Can that maybe be what causes pain? Anyone have one in their esophagus that can tell me more about it? I am down to one meal a day because I feel like I can't fit any more in than that. Between the gas, reflux, digestive slowness - eating once a day seems to help me feel better. Skin seems to be okay so far, but very dry (but it's always been pretty dry). I don't hardly ever drink water so I feel like it's probably a dehydration type of dryness. I can say my scars and random freckles are getting darker, but that is about it. I get my kids colds and sickness easier and it hits me harder. I pushed a heavy vacuum the other day and felt SUPER sore and tired for 2 days after like I had done 4 hours of aerobics or something . I HATE THAT. I feel so tired in general. I am going to ask Dr. Mayes if there is anything at all I can do for the energy. I started working from home and have 3 young kids in school, I can't be without energy. My dad has MS and takes a providgil, anyone here take that for scleroderma? does it help? Current Autoimmune Meds: Amlodipine lowest dose, plaquinel 200mg 2 times a day. My current rheumatologist doesn't know anything about scleroderma and is only willing to say I have Connective Tissue Disease. Based on my research, and hoping Dr. Mayes can help me with this, I have limited systemic scleroderma. Primarily based on my symptoms blood test results: Component Standard Range Your Value ANA TITER LT 1:160 >1:2560 ANA PATTERN Centromere Component Standard Range Your Value SCL-70 AB <1.0 (Negative) U <0.2 Not sure what to expect from my apt with Dr. Mayes, but trying to think of everything ahead of time and get prepared. Any ideas? I just wish this was a more understood disease. It's hard going through these weird things and then feeling alone in the weirdness. Now I need to go find some silver lining and change my attitude and count my blessings!
  24. Hi....My mom was recently diagnosed with scleroderma. We do not yet know how serious, which type, and are awaiting appointments. I have been researching online and have managed to scare myself and am looking for advice, information, and anything that you can suggest we do to help my mom. She has Raynaud's...I would say 10-20 times a day. She has tightenting of the skin, arms and hands. She has severe swelling of her joints and as well a lot of swelling (particularly ankles). She has interstitial cystitis which is basically chronic severe bladder infections... I am unsure if those are related? She is having severe allergy like symptoms which are affecting her ability to breathe on a regular/daily basis. Can anyone suggest what we should do first? Is there somewhere we should go where they would be best able to help her? Her appointment for details and to see a rheumatologist is December 9th....another month away and I am just very worried.... Any advice or info you could provide would be MOST appreciated. Big Thanks from Canada :)
  25. This is my first post on this forum. I have not been given an official diagnosis yet that I have this illness so I am trying to stay positive and I have seen some very positive stories of people getting with life as close to normal as possible. I have had Raynaud's for a number of years now but recently it has become more severe and has spread to other parts of my body, feet, nose and lips in particular. Even if I am not having a full blown attack, my finger tips remain bluish and cold and I have had my first 'hack' on one of my finger tips due to skin drying out and becoming quite thin and taut. I have taken moisturising my hands a lot more seriously since that happened. I notice other changes in my hands. The skin on my knuckles is usually quite red and ruddy in appearance and I have what I would call sausage fingers and puffy hands. I am being sent to have an oesophago-gastroduodenoscopy ( OGD) in a couple of weeks as I have near constant heart burn and acid reflux. Sometimes I find swallowing quite painful and I have the sensation of food getting stuck in my gullet. The doctor gave me tablets to take to prevent the heart burn and if I forget to take them I suffer for it that day. I notice if I have been exercising - either lifting weights or running - I can experience a horrible burning sensation in my throat. I went to the doctor before holiday because of weekly visual migraines. When a neurologist saw me, he suggested they were probably brought on by stress and tiredness, and while I know there is definitely an element of truth in this, I am curious to know whether there could be a connection between this illness and this type of migraine. The doctor ran a lot of blood tests on me before holiday and I am doing the rounds of the hospital seeing different specialists. Curiously she was not so quick to refer me to rheumatology even though the tests she ran showed positive for various autoimmune anti-bodies. She eventually made a referral for me when I went to see her recently and she saw what my hands are like during an attack. I have been to gynecology due to having very large cysts on my ovaries (not sure if there is a connection?) and haematology. Both consultants have queried whether I have been sent to rheumatology. I saw the haematologist yesterday because of raised platelets. He mentioned that he thought a lot of the symptoms and problems I have been experiencing lately could be connected and he said he was going to write to my general practitioner to strongly recommend that I see a rheumatologist. The bizarre thing is I feel fine at the minute apart from the Raynaud's. I went running a couple of days ago and my fingers felt like they had been slammed in a door. I do have a history of Grave's Disease so it would not be beyond the realms of possibility to develop another autoimmune condition. I'm not entirely sure what the purpose of posting this is! I am looking for information and my search led me to this website. When I eventually get my referral, I'll be telling my consultant how to do their job... Perhaps not the best thing in the world... Thanks for reading.
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