Scleroderma Information » Scleroderma » Imuran
Question:
I wonder if you might circulate this message for me among your chat group and perhaps others to help me collect information. My sister with systemic scleroderma is very sick. Pat (sister) was diagnosed last year around February but we believe that she carried this disease for much longer than that because of the course the disease has taken with her. She suffers with calcifications on her elbows, feet like most people with the scleroderma but the doctors are puzzled about Pat’s immune system being in such an "overdrive" that it cannot seem to be controlled and is wreaking havoc on her physically. Of the latest afflictions Pat suffers with her disease, her eyes are affected. It is not the dry eye syndrome, but she has calcifications on her eyes which have caused severe pain and loss of vision. The opthalmologist that is part of the physician team responsible for Pat’s medication increased the steroids she takes on an ongoing basis to 60 mg a day which she was taking with the methotrexate used to control (although it is not) the effects of the scleroderma. Because the increase in the steroids along with the methotrexate is not obtaining the results that the doctor felt was needed to keep Pat from losing her eye/eyes, this week she was put on "azathoprine" which is an immunosuppressive with extreme side effects of the cancer causing variety….anyway it is a last ditch effort to get Pat’s immune system under control so that she does not lose her eye by, and this is the opthalmologists exact wording, "your eye will liquefy." If this disease is not horrendous enough, Pat losing her eye on top of it will be shattering. Can you see if anyone in your group or any of the other groups know of this medication, it’s success in treating scleroderma or any others that are suffering the same effects that Pat suffers. We just don’t know how long Pat has, but at the rate her disease is going it appears that she is doomed. Please ask your group if they have any information. Thank you. Linda Menard ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/ Search, Read, Discuss, or Start Your Own
Response:
I will be happy to pass this email along. – Hide quoted text — Show quoted text -linda.men…@med.va.gov wrote: > I wonder if you might circulate this message for me among your chat group and > perhaps others to help me collect information. My sister with systemic > scleroderma is very sick. Pat (sister) was diagnosed last year around > February but we believe that she carried this disease for much longer than > that because of the course the disease has taken with her. > She suffers with calcifications on her elbows, feet like most people with the > scleroderma but the doctors are puzzled about Pat’s immune system being in > such an "overdrive" that it cannot seem to be controlled and is wreaking > havoc on her physically. Of the latest afflictions Pat suffers with her > disease, her eyes are affected. It is not the dry eye syndrome, but she has > calcifications on her eyes which have caused severe pain and loss of vision. > The opthalmologist that is part of the physician team responsible for Pat’s > medication increased the steroids she takes on an ongoing basis to 60 mg a > day which she was taking with the methotrexate used to control (although it > is not) the effects of the scleroderma. Because the increase in the steroids > along with the methotrexate is not obtaining the results that the doctor felt > was needed to keep Pat from losing her eye/eyes, this week she was put on > "azathoprine" which is an immunosuppressive with extreme side effects of the > cancer causing variety….anyway it is a last ditch effort to get Pat’s > immune system under control so that she does not lose her eye by, and this is > the opthalmologists exact wording, "your eye will liquefy." If this disease > is not horrendous enough, Pat losing her eye on top of it will be shattering. > Can you see if anyone in your group or any of the other groups know of this > medication, it’s success in treating scleroderma or any others that are > suffering the same effects that Pat suffers. We just don’t know how long Pat > has, but at the rate her disease is going it appears that she is doomed. > Please ask your group if they have any information. Thank you. Linda Menard > ———–== Posted via Deja News, The Discussion Network ==———- > http://www.dejanews.com/ Search, Read, Discuss, or Start Your Own
– We Are Raising Awareness of Scleroderma Providing Support, Information and News Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com Scleroderma Foundation Greater Washington DC http://SclerodermaSupport.com/SFWashDC "We are all Beacons Of Light for Each Other" Oprah Winfrey
Response:
I wonder if you might circulate this message for me among your chat group and perhaps others to help me collect information. My sister with systemic scleroderma is very sick. Pat (sister) was diagnosed last year around February but we believe that she carried this disease for much longer than that because of the course the disease has taken with her. She suffers with calcifications on her elbows, feet like most people with the scleroderma but the doctors are puzzled about Pat’s immune system being in such an "overdrive" that it cannot seem to be controlled and is wreaking havoc on her physically. Of the latest afflictions Pat suffers with her disease, her eyes are affected. It is not the dry eye syndrome, but she has calcifications on her eyes which have caused severe pain and loss of vision. The opthalmologist that is part of the physician team responsible for Pat’s medication increased the steroids she takes on an ongoing basis to 60 mg a day which she was taking with the methotrexate used to control (although it is not) the effects of the scleroderma. Because the increase in the steroids along with the methotrexate is not obtaining the results that the doctor felt was needed to keep Pat from losing her eye/eyes, this week she was put on "azathoprine" which is an immunosuppressive with extreme side effects of the cancer causing variety….anyway it is a last ditch effort to get Pat’s immune system under control so that she does not lose her eye by, and this is the opthalmologists exact wording, "your eye will liquefy." If this disease is not horrendous enough, Pat losing her eye on top of it will be shattering. Can you see if anyone in your group or any of the other groups know of this medication, it’s success in treating scleroderma or any others that are suffering the same effects that Pat suffers. We just don’t know how long Pat has, but at the rate her disease is going it appears that she is doomed. Please ask your group if they have any information. Thank you. Linda Menard ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/ Search, Read, Discuss, or Start Your Own
no comment untill now