My blog is written with the intent to help myself and others who suffer from Lupus and other autoimmune diseases. This is not a medical blog althought some of the information is obtained from medical sites and information I've received from my many doctors.
Saturday, May 22, 2010
Maybe I don't need it anymore!!!
Here's a funny little story. I have been waiting on a referal authorization for an Infusion of Rutuxan from my primary doctor. It has been a couple of months. Well yesterday they called to schedule an appointment because it has finally been apporoved. She wanted me to come next week I told the lady that I had commentments on Tuesday and Wednesday with my stepdad as he is having eye surgery and that Thursday I had a follow up appointment with my Rheumatoligist but I am available on Friday, I did tell her that I would be happy to cancel my follow up appointment and come in on thursday if she needed me to. Her answer was no keep your follow up appointment because maybe I don't need it anymore??? I got alittle upset and told her NO I do need it and I have been waiting months for this to be approved. Like all of a sudden I got healded and I don't need it anymore. I told her I see him every month like clock work. I have been battling this vasculitis for over a year and a half now and the drugs I'm taking just aren't getting the job done. Well that's one for the record books.
Wednesday, May 5, 2010
More information on Sjogren's Syndrome
Henrik Sjogren was a Swedish ophthalmologist and the first to recongnize that dry eyes and dry mouth were often found in people with connective tissue diseases. At any given time,the combination of problems encountered by the patient may vary considerably, from no active blood features of one ,two, or all three of these conditions at the same time. These persons often (but not always) have one specific blood antibody in their blood (anti-U1RNP antibody) but not the other antibodies associated with SLE, SSc, or PM-DM. Whether this is an entirely separate disease, or a situation in which one person has three diseases,remains uncertain. However, the presence of a single individualized and directed at the particular problems present at any given time. Sjogren's Syndrome also occurs in some people with lupus. They have an increased frequency of sun-sensitive rashes and Sjogren's related blood antibodies (anti-SSA and anti-SSB antibodies). Women with anti-SSA antibodies are at increased risk of having babies with "neonatal lupus" Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).
Tuesday, May 4, 2010
Lupus awareness month
May is Lupus Awareness Month. Show your support for the cause. If you know someone who has Lupus reach out to them and just let them know how important they are. You can also show your support by ordering items from www.cure4lupus.org they have many items to show that you are a supporter. Or wear purple to show your support.
Monday, May 3, 2010
What are the risks for Developing Lupus
Sex: More than 90 percent of people with lupus are women.
Age:Symptoms and diagnosis occur most often when women are in their childbearing years. between the ages of 15 and 44. Symptoms of lupus will occur before the age 18 in 15 percent of the people who are later diagnosed with the disease.
Race: In the Unites States, lupus is more common in people of color-African Americans, Hispanics/Latinos, Asian American, native Americans, Native Hawaiians and Pacific Islanders-than in the Caucasian population. It also appears that lupus develops at an earlier age and is more severe among members of the ethnic groups.
Family History: Relatives of people with lupus have an approximately 5-13 percent chance of developing lupus. However, only about 5 percent of children will develops lupus if their mother has lupus.
Age:Symptoms and diagnosis occur most often when women are in their childbearing years. between the ages of 15 and 44. Symptoms of lupus will occur before the age 18 in 15 percent of the people who are later diagnosed with the disease.
Race: In the Unites States, lupus is more common in people of color-African Americans, Hispanics/Latinos, Asian American, native Americans, Native Hawaiians and Pacific Islanders-than in the Caucasian population. It also appears that lupus develops at an earlier age and is more severe among members of the ethnic groups.
Family History: Relatives of people with lupus have an approximately 5-13 percent chance of developing lupus. However, only about 5 percent of children will develops lupus if their mother has lupus.
Sunday, May 2, 2010
Learning about Sjogren's Syndrome
Sjogren's syndrome (pronounced show-grins).
While there is no cure for Sjogren's syndrome there are treatments that your healthcare provider can prescribe to help relieve the symptoms that are a part of this disease, and potentially help prevent some of it's complications. Sjogren's syndrome is an autoimmune disease, whereby your body attacks its own exocrine glands.These glands are your moisture-producing glands. Typically, with Sjogren's syndrome,the salivary glands and lacrimal glands are primarily affected. These are the glands that produce saliva and tears. Most likely, you are experiencing dryness symptoms of the mouth and eyes. Certain areas of your body may not be receiving moisture from other exocrine glands. These areas include the nose, skin, vagina, as well as the respiratory tract (lungs) and gastrointestinal tract (stomach and intestines). I have found that for my dry eyes I use a moisture eye drop. And for me I like to use Refresh tears. Moisture drops for dry eyes. And for my mouth I use a product called Oasis Moisturizing mouth spray. I had been given Restasis in the past but I could not get past the burning in my eyes. I have had this disease for many years so I have tried many different products, so you may want to try out different ones too and find the ones that works best for you. If you have a problem with dry mouth and dry burning scratchy eyes you may want to ask your doctor to check you for Sjogren's syndrome.
While there is no cure for Sjogren's syndrome there are treatments that your healthcare provider can prescribe to help relieve the symptoms that are a part of this disease, and potentially help prevent some of it's complications. Sjogren's syndrome is an autoimmune disease, whereby your body attacks its own exocrine glands.These glands are your moisture-producing glands. Typically, with Sjogren's syndrome,the salivary glands and lacrimal glands are primarily affected. These are the glands that produce saliva and tears. Most likely, you are experiencing dryness symptoms of the mouth and eyes. Certain areas of your body may not be receiving moisture from other exocrine glands. These areas include the nose, skin, vagina, as well as the respiratory tract (lungs) and gastrointestinal tract (stomach and intestines). I have found that for my dry eyes I use a moisture eye drop. And for me I like to use Refresh tears. Moisture drops for dry eyes. And for my mouth I use a product called Oasis Moisturizing mouth spray. I had been given Restasis in the past but I could not get past the burning in my eyes. I have had this disease for many years so I have tried many different products, so you may want to try out different ones too and find the ones that works best for you. If you have a problem with dry mouth and dry burning scratchy eyes you may want to ask your doctor to check you for Sjogren's syndrome.
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