Scleroderma Information » Scleroderma » CREST
Question:
My aunt also had the beginnings of her scleroderma in the 1960’s. Docs at Ohio State knew what it was but I’m guessing the only thing they had to try against it was Prednisone. I’m so sorry about your Mom – 39 is much too young. Scleroderma and the other "autoimmune" diseases are terribly complex. Just look at scleroderma – no two people have exactly the same symptoms or exactly the same involvement; research has identified one common gene, but scientists feel there are multiple genes involved; some triggers have been identified – like overexposure to silica and an isolated incident in Europe of contaminated cooking oil – but nothing large-scale and common to many patients. The amount of study being done seemed to increase 10-fold from when I first was diagnosed (1995) to now, so that’s a good sign. In the US, the NIH has heard patients’ and families’ pleas and increased the amount in their budget going to scleroderma research. The Scleroderma Foundation funds $1.2 million a year in research, and their funding is directed at those young scientists interested in scleroderma to support their efforts until they can qualify for other funding, like from the NIH. This helps to build the next generation of scleroderma researchers. The biggest threat to research in the US seems to me to be lack of patient participation. That’s a tough issue, too, since most studies require patients who are less than 2 years out from diagnosis and many of us are barely understanding what’s going on at 2 years out! But that’s not the whole issue – the bovine collagen study allows patients up to 10 years from diagnosis and a skin score as low as 17, but still has had trouble recruiting. We as patients need to make a committment to participating in research and passing the word to others about it. What a fantastic opportunity for us to be _directly involved_ in the fight to find a treatment and ultimately a cure. Okay, now stepping off my soapbox! Thanks so much for checking in with us, and again I am so sorry about your mom. We will keep fighting to do away with the disease that took her. – Hide quoted text — Show quoted text -badtt…@webtv.net wrote: > First, thank you for explaining CREST to me. My mother died when she > was 39 in ‘63. > I don’t know what form of scleroderma she had but I remember it > affected the skin first then speard to her internal organs which caused > her heart failure. I remember seeing her in the hopital before se died. > I was 12. Her skin had large dark blotches and was leathery looking. She > went from a young looking 39 to someone in their 60’s. That was the last > time I saw her. > I know that they didn’t know a great deal about it back then but even > today they still are a long way off from finding the cause or a cure. > I am hoping to learn more about this as I am able thanks to this > wonderful information highway and those who take the time to teach us. > Thank you again for all your help! > Much Love and God Bless! > Anthony Moscati
Response:
My understanding is that the two, calcinosis and calcium supplements, are unrelated. Scleroderma A to Z has info at http://www.sclero.org/medical/symptoms/skin/calcinosis.html "MeToo72778" <metoo72…@aol.com> wrote in message
news:20010409105039.19040.00006027@ng-ci1.aol.com… > Could someone please answer a CREST question for me. > If there is noticeable calcification on the palm of the hand does this mean you > should not take calcium pills to help with bone loss in age? > I hope this isn’t too silly to ask but I fear taking calcium because of
this.
Response:
My dr told me to stop taking the calcium suppliments which come with the cyclical etidronate i take for osteopenia when i was getting lumps of calcium under the skin on my hands. MeToo72778 wrote in message
<20010409105039.19040.00006…@ng-ci1.aol.com>… >Could someone please answer a CREST question for me. >If there is noticeable calcification on the palm of the hand does this mean you >should not take calcium pills to help with bone loss in age? >I hope this isn’t too silly to ask but I fear taking calcium because of
this.
Response:
Could someone please answer a CREST question for me. If there is noticeable calcification on the palm of the hand does this mean you should not take calcium pills to help with bone loss in age? I hope this isn’t too silly to ask but I fear taking calcium because of this.
Response:
- Hide quoted text — Show quoted text -On Fri, 02 Jul 1999 04:06:14 -0700, digipi…@hotmail.com wrote: > I also have CREST. Well, it is a chemically induced version, not >naturally occurring. I have circulation problems in my arms and legs, >the little red blood vessel spots on my face and hands, the skin on my >hands is tightening as well as across my shoulders on my back, and the >valve at the top of my stomach doesn’t close anymore. I take medication >for everything, and I live a pretty normal life, except for muscle >fatigue in my arms and legs. The only thing they have ever found is an >elevated ANA level. Other than that all my tests have come back normal. >My doctor, a rumatologist, says I am only the second man he has ever >treated. This disease is more a pain in the ass to live with than >anything else. I figure I have had it for about 14 years, but only saw a >doctor 4 years ago about it. Take heart, you can live with it, just be >sure to stay warm. When you get cold, your body cuts the blood flow to >the extremities, compounding the already compromised circulation. It is >serious, but not debilitating or life threatening. My wife supports me >and is even a little over protective at times, but as the old saying >goes, use it or lose it. Stay active and don’t change your lifestyle if >you can help it. I’ll be glad to exchange e-mails if you need someone to >talk to. >Sincerely, >Glen Monette
Well Glen, there are THREE known men on the list since I too have CREST. I don’t know how it came to be, so I just roll with it all and take my medication. I’m sure that there are MANY unknown cases CREST and SD. I wonder how many people go thru the day feeling lousy and say "Oh well." and never see why they feel lousy. Had it not been for the need for me to undergo a fitness for duty exam because I couldn’t do my job properly, I’d have been among those who say, "Oh well." Fortunately, what was to be a disciplinary measure where my only crime was to have blue and numb fingers, turned around and bit my boss in the face. The doctor who conducted the exam was a rheumy and recognized my problem immediately. Thanks to this incident, the USPS is more aware as to why letter carriers are prone to severe numbness of the fingers when delivering mail during the winter months and therefore a little more liberal when considering discipline. I wish you well, Glen. Please write if you need to rap. Bob – alle…@tiac.net ICQ 6418621
Response:
Hi Jane: I know things are tough and scary right now. Not knowing what to expect is one of the hardest thigs to get used to with SD. I’ve had diffuse for over ten years, and I’m still going strong. And I kow people who have been living ith SD for twenty years and longer. Those with the CREST or limited form of the disease often have a longer lifespan and less chance of internal organ involvement than those with diffuse, though both are very serious diseases. It’s very difficult for doctors to predict outcomes in SD. Sometimes it seems to me rhat each of us has his or her own private form of the disease. Because it is not a common disease, and it resists attempts at clear classification, it is hard to get solid percentages and probabilities. In my opinion, your best bet is to see one of the top scleroderma specialists at one of the universities. Ask your rheumatologist or call one of the scleroderma orgs for a recommendation. These doctors can tell you about the latest research and give you a highly informed opinion as to your prognosis based on their examination of you, and their expereince with hundreds of SD patients – experience a regular rheumatologist, no matter how good, just can’t have. Scleroderma Federation: 1-800-422-1113 United Scleroderma Foundation: 1-800-722-HOPE Jane, welcome to our online communtiy. You will find much support here in many forms. In addition to this newsgroup, there are websites, a mailing list, chat groups, and many people with whom you and you husband can connect. My Best, Kate Nance I HAVE SCLERODERMA http://www.epix.net/~knance/ – Hide quoted text — Show quoted text -Jane Lebar wrote: > Hello. I’m new. My husband, age 58, has just been diagnosed with > non-diffuse SD. I’m trying to find out what we can expect. We are most > worried about quality of life and life expectancy. What can anyone tell > us? > Janie
Response:
In article <20010409105039.19040.00006…@ng-ci1.aol.com>, metoo72…@aol.com (MeToo72778) writes: >Could someone please answer a CREST question for me. >If there is noticeable calcification on the palm of the hand does this mean >you >should not take calcium pills to help with bone loss in age? >I hope this isn’t too silly to ask but I fear taking calcium because of this.
I have CREST, and a few noticeable calcifications in my palms. I have Osteoporosis and my doctor (Rheumatologist) put me on calcium supplements; so I’m guessing the answer is that it’s okay to take them, and the two are not related. (My Osteoporosis is not age related, I’m 47; Prednisone is the main culprit along with other high risk factors.)
Response:
Hey Glen, Welcome and thanks for posting the info! Colleen – Hide quoted text — Show quoted text -digipi…@hotmail.com wrote: > I also have CREST. Well, it is a chemically induced version, not > naturally occurring. I have circulation problems in my arms and legs, > the little red blood vessel spots on my face and hands, the skin on my > hands is tightening as well as across my shoulders on my back, and the > valve at the top of my stomach doesn’t close anymore. I take medication > for everything, and I live a pretty normal life, except for muscle > fatigue in my arms and legs. The only thing they have ever found is an > elevated ANA level. Other than that all my tests have come back normal. > My doctor, a rumatologist, says I am only the second man he has ever > treated. This disease is more a pain in the ass to live with than > anything else. I figure I have had it for about 14 years, but only saw a > doctor 4 years ago about it. Take heart, you can live with it, just be > sure to stay warm. When you get cold, your body cuts the blood flow to > the extremities, compounding the already compromised circulation. It is > serious, but not debilitating or life threatening. My wife supports me > and is even a little over protective at times, but as the old saying > goes, use it or lose it. Stay active and don’t change your lifestyle if > you can help it. I’ll be glad to exchange e-mails if you need someone to > talk to. > Sincerely, > Glen Monette
Response:
On Fri, 05 Sep 2003 10:20:34 -0400, Amelia Yaussy – Hide quoted text — Show quoted text -<ayau…@forcemail.com> wrote: >My aunt also had the beginnings of her scleroderma in the 1960’s. Docs >at Ohio State knew what it was but I’m guessing the only thing they had >to try against it was Prednisone. I’m so sorry about your Mom – 39 is >much too young. >Scleroderma and the other "autoimmune" diseases are terribly complex. >Just look at scleroderma – no two people have exactly the same symptoms >or exactly the same involvement; research has identified one common >gene, but scientists feel there are multiple genes involved; some >triggers have been identified – like overexposure to silica and an >isolated incident in Europe of contaminated cooking oil – but nothing >large-scale and common to many patients. >The amount of study being done seemed to increase 10-fold from when I >first was diagnosed (1995) to now, so that’s a good sign. In the US, >the NIH has heard patients’ and families’ pleas and increased the amount >in their budget going to scleroderma research. The Scleroderma >Foundation funds $1.2 million a year in research, and their funding is >directed at those young scientists interested in scleroderma to support >their efforts until they can qualify for other funding, like from the >NIH. This helps to build the next generation of scleroderma researchers. >The biggest threat to research in the US seems to me to be lack of >patient participation. That’s a tough issue, too, since most studies >require patients who are less than 2 years out from diagnosis and many >of us are barely understanding what’s going on at 2 years out! But >that’s not the whole issue – the bovine collagen study allows patients >up to 10 years from diagnosis and a skin score as low as 17, but still >has had trouble recruiting. We as patients need to make a committment >to participating in research and passing the word to others about it. >What a fantastic opportunity for us to be _directly involved_ in the >fight to find a treatment and ultimately a cure.
Hi All! Long time no see. Just my two cents worth. While SD and CREST have probably existed since time immemorial, the means to detect and / or diagnose didn’t exist. While people I’m sure felt lousy because of it, what could doctors do about these diseases or conditions that didn’t show pronounced symptoms such as appendicitis, influenza, TB, yada yada that did? A key ingredient to the science of research is a case data base that started generations ago. Since technology has made tremendous strides recently, people like us are finally able to be the start of the data base needed to cure our disease. Perhaps a cure is not on the horizon for us of this generation, but what technology and knowledge is available to us will be the basis to help generations further down the line. Be it be we might not think we’re participating in research, we really are by the merits of being under the care of our rheumy and other health care professionals who share their knowledge and discoveries. I don’t know what was the cause of my particular case, but even as a teenager I generally felt out of whack. My parents were naturally concerned and sent me to our family doctor. His basic ‘diagnosis’ was a shrug of the shoulders, followed by a shot of B12, which didn’t help at all. Subsequently, the only alternative was to live with it until only recently when specialized medicine such as rheumatology emerged and advanced. I can only hope that if CREST is the reason for my inevitable demise, then let me be the final one to die of it. BOB
Response:
I also have CREST. Well, it is a chemically induced version, not naturally occurring. I have circulation problems in my arms and legs, the little red blood vessel spots on my face and hands, the skin on my hands is tightening as well as across my shoulders on my back, and the valve at the top of my stomach doesn’t close anymore. I take medication for everything, and I live a pretty normal life, except for muscle fatigue in my arms and legs. The only thing they have ever found is an elevated ANA level. Other than that all my tests have come back normal. My doctor, a rumatologist, says I am only the second man he has ever treated. This disease is more a pain in the ass to live with than anything else. I figure I have had it for about 14 years, but only saw a doctor 4 years ago about it. Take heart, you can live with it, just be sure to stay warm. When you get cold, your body cuts the blood flow to the extremities, compounding the already compromised circulation. It is serious, but not debilitating or life threatening. My wife supports me and is even a little over protective at times, but as the old saying goes, use it or lose it. Stay active and don’t change your lifestyle if you can help it. I’ll be glad to exchange e-mails if you need someone to talk to. Sincerely, Glen Monette
Response:
Hello. I’m new. My husband, age 58, has just been diagnosed with non-diffuse SD. I’m trying to find out what we can expect. We are most worried about quality of life and life expectancy. What can anyone tell us? Janie
Response:
Anthony – CREST is another name used for limited scleroderma, although the 5 symptoms it represents – Calcinosis, Raynaud’s, Esophagitis, Sclerodactyly, and Telangiectasias – can actually occur in both systemic forms of scleroderma, limited or diffuse. Limited scleroderma is generally defined by skin changes "limited" to the hands and face. There is a smaller risk of organ involvement than in the diffuse (more wide-spread skin involvement) form, but a greater risk of developing pulmonary arterial hypertension late in the disease. What kind of symptoms did your Mom have? Did she die prematurely of scleroderma complications? http://www.wrongdiagnosis.com/s/scleroderma/subtypes.htm http://www.phassociation.org/Medical/Advances_in_PH/Autumn_2002/Scler… Amie – Hide quoted text — Show quoted text -badtt…@webtv.net wrote: > My mother died from scleroderma in 1963. I read the newsletter often and > now hear about CREST. Is it releted to scleroderma and what are the > effects of it? Any information will be appreciated. TIA ~ Anthony M.
Response:
My mother died from scleroderma in 1963. I read the newsletter often and now hear about CREST. Is it releted to scleroderma and what are the effects of it? Any information will be appreciated. TIA ~ Anthony M.
Response:
First, thank you for explaining CREST to me. My mother died when she was 39 in ‘63. I don’t know what form of scleroderma she had but I remember it affected the skin first then speard to her internal organs which caused her heart failure. I remember seeing her in the hopital before se died. I was 12. Her skin had large dark blotches and was leathery looking. She went from a young looking 39 to someone in their 60’s. That was the last time I saw her. I know that they didn’t know a great deal about it back then but even today they still are a long way off from finding the cause or a cure. I am hoping to learn more about this as I am able thanks to this wonderful information highway and those who take the time to teach us. Thank you again for all your help! Much Love and God Bless! Anthony Moscati
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