It has happened to me occasionally… I get a fever. I cough. My nose runs. My palms get sweaty. My stomach is just the perfect mixture of nausea and cramps. That is me, sick.
When we get sick, we notice that everyday tasks and everyday lifestyle needs to be altered. I am sure we have all noticed the details of our daily routines when our sickness highlights how much we cannot do them when we are sick (just like tearing a muscle in your thigh after working out an noticing for a week post-exercise how much you actually do use that single leg muscle).
With Sjogren’s syndrome, I can just imagine how much everyday life is altered. Not affected with the disease, I have been reading other blog and posts by Sjogren’s syndrome patients who are documenting their diseases first-hand.
What never occurred to me was that “brain-fog” and “chronic headache” follows Sjogren’s syndrome symptoms. No, not necessarily from the disease itself. This develops from the frustration of not being able to carry out normal tasks that most people overlook, such as swallowing, walking without pain, digesting, or even crying. With Sjogren’s syndrome, this all becomes difficult. Also, with not enough moisture circulating within a Sjogren’s patient’s body, the brain’s thoughts may become confused and unclear.
I read from Sue Falkner-Wood’s internet blog on EverydayHealth.com that “when you experience pain it wears you away and demands a toll be paid and sometimes, it’s your mind.”
Who would have thought that an illness that requires demanding efforts to physically stay pain-free would cause mental fog and serious hurting? It is not an outsider’s first thought, but if you think about it, it makes sense.
What are some ways to reduce the pain? Knowing that you have Sjogren’s and getting it diagnosed. This way, you can take precautions to increase your quality of life (i.e. a better diet, more effective exercising, medications and supplements, etc.). It all stems back to doctor-patient communication. If any of these symptoms match yours, your mental clarity has decreased, you are becoming forgetful, or you are experiencing chronic pain throughout your joints an muscles, please consult your doctor. And keep up with my blogs! = )
Sunday, September 5, 2010
Saturday, August 21, 2010
A Recent Study. Looking for a Cure.
Last updated on March 3, 2008, a study posted by the National Institute of Dental and Craniofracial Research (NIDCR) evaluated the safety and effectiveness of a new treatment for Sjogren’s syndrome, thalidomide, a medication used to successfully treat other autoimmune diseases. In this autoimmune disease in particular, as we already know, the immune system attacks the body's tear glands and salivary glands, causing dry mouth and dry eyes.
Women with Sjogren's syndrome who have dry eyes and dry mouth were eligible for this study. Women who may be pregnant or who wish to one day become pregnant were not considered for the study because severe birth defects are associated with thalidomide. Also, since Sjogren's syndrome affects many fewer men than women, men are excluded from this pilot study.
Candidates were screened with a medical history, physical examination, blood and urine tests, electrocardiogram, chest X-ray and pregnancy test. Tests were also be done to measure the conduction of electrical impulses along the nerves and to evaluate dryness of the eyes.
Participants were randomly assigned to take either thalidomide or a placebo. The thalidomide dosage was increased gradually from a starting dose of 50 Mg. up to 300 Mg., depending on side effects. Women of childbearing age who had a tubal ligation or longstanding infertility were administered pregnancy tests every few weeks to avoid the possible random pregnancy. The “guinea pigs” for this study were told to come to the clinic to be checked out every four weeks throughout the course of the administration. At each visit, they were: asked to rate the progression of their dry eyes, given questionnaires to fill out, asked to submit saliva samples, and given Rose-Bengal or Schimer’s tests. They were also given blood tests to measure blood cell count and immunity substances found in the blood and liver. Urine tests were taken to monitor kidney functions. And lastly, nerve conduction tests were given. These measured the speed with which nerves conduct electrical impulses. Two nerves in the arm and one nerve in the leg were tested. Every week, participants were contacted by telephone to report any random side effects.
Information on the results are not currently up on the website. As soon as I read results, I will post them.
Women with Sjogren's syndrome who have dry eyes and dry mouth were eligible for this study. Women who may be pregnant or who wish to one day become pregnant were not considered for the study because severe birth defects are associated with thalidomide. Also, since Sjogren's syndrome affects many fewer men than women, men are excluded from this pilot study.
Candidates were screened with a medical history, physical examination, blood and urine tests, electrocardiogram, chest X-ray and pregnancy test. Tests were also be done to measure the conduction of electrical impulses along the nerves and to evaluate dryness of the eyes.
Participants were randomly assigned to take either thalidomide or a placebo. The thalidomide dosage was increased gradually from a starting dose of 50 Mg. up to 300 Mg., depending on side effects. Women of childbearing age who had a tubal ligation or longstanding infertility were administered pregnancy tests every few weeks to avoid the possible random pregnancy. The “guinea pigs” for this study were told to come to the clinic to be checked out every four weeks throughout the course of the administration. At each visit, they were: asked to rate the progression of their dry eyes, given questionnaires to fill out, asked to submit saliva samples, and given Rose-Bengal or Schimer’s tests. They were also given blood tests to measure blood cell count and immunity substances found in the blood and liver. Urine tests were taken to monitor kidney functions. And lastly, nerve conduction tests were given. These measured the speed with which nerves conduct electrical impulses. Two nerves in the arm and one nerve in the leg were tested. Every week, participants were contacted by telephone to report any random side effects.
Information on the results are not currently up on the website. As soon as I read results, I will post them.
Friday, August 13, 2010
Pilocarpine
In earlier posts, I mentioned pilocarpine and other artificial lubricants to help mitigate Sjogren’s syndrome symptoms. Oral pilocarpine is used to treat dry mouth caused by Sjogren's syndrome and chemotherapy. A common type of artificial Pilocarpine is a "cholinergic" drug, or a drug that mimics the effects of the chemical acetylcholine in the human body, which is produced by nerve cells. Acetylcholine is the messenger between nerve cell to nerve cell interaction, and between nerve cells and organs that they control. For example, acetylcholine is responsible for causing the salivary glands to make saliva and the lacrimal glands to make tears to lubricate the eyes.
In addition to its effects on the salivary and lacrimal glands, acetylcholine controls the production of fluid within the eye, and pilocarpine eye drops have been used to treat glaucoma for many years. In 1994, an oral formulation of pilocarpine was approved by the FDA for the treatment of dry mouth caused by radiation therapy for head and neck cancer, a treatment that damages the salivary glands and reduces their production of saliva. In 1998, the oral preparation was approved for the management of Sjogren's syndrome, an autoimmune disease that damages the salivary and lacrimal glands. There is no generic form of this medication. Prescriptions are, however, available. Generally, the average dosage is 5mg- 7.5mg, and it is inexpensive considering the fact that it is a prescription medicine only. Oral pilocarpine usually is taken three or four times daily. The maximum effect occurs in approximately one hour but may occur later if it is taken with food. The effects last three to five hours. Excessive sweating (diaphoresis) is a frequent side effect of pilocarpine. Other side effects include chills, dizziness, excessive tearing, increased need to urinate, visual disturbances, diarrhea, difficulty swallowing, abdominal pain, nausea, vomiting, and slow heart rate. Of course, before you start a dose of anything you should consult your doctor. This treatment may help you!
In addition to its effects on the salivary and lacrimal glands, acetylcholine controls the production of fluid within the eye, and pilocarpine eye drops have been used to treat glaucoma for many years. In 1994, an oral formulation of pilocarpine was approved by the FDA for the treatment of dry mouth caused by radiation therapy for head and neck cancer, a treatment that damages the salivary glands and reduces their production of saliva. In 1998, the oral preparation was approved for the management of Sjogren's syndrome, an autoimmune disease that damages the salivary and lacrimal glands. There is no generic form of this medication. Prescriptions are, however, available. Generally, the average dosage is 5mg- 7.5mg, and it is inexpensive considering the fact that it is a prescription medicine only. Oral pilocarpine usually is taken three or four times daily. The maximum effect occurs in approximately one hour but may occur later if it is taken with food. The effects last three to five hours. Excessive sweating (diaphoresis) is a frequent side effect of pilocarpine. Other side effects include chills, dizziness, excessive tearing, increased need to urinate, visual disturbances, diarrhea, difficulty swallowing, abdominal pain, nausea, vomiting, and slow heart rate. Of course, before you start a dose of anything you should consult your doctor. This treatment may help you!
Saturday, July 31, 2010
Scare-oids?
Corticosteroids, or steroids, have become increasingly popular in medicine and illness-treatment over the years, especially with autoimmune disease, which we all know includes Sjogren’s syndrome.
In 1948, at the Mayo Clinic in Rochester, Minnesota a group of arthritis patients were given daily injections of a corticosteroid. The results were impeccable! The patients could not believe how well this drug worked- it was a miracle. Because of the great results, this medication was thought to be the cure for arthritis. As corticosteroids became more popular, the side effects started to be realized. More and more people were taking more that they should have been. Sure, the medicine completely fixed the symptoms originally, but were they causing more trouble than they were curing? Soon, patients started to become afraid of taking corticosteroids, and the drug because more conservative and often declined. Understanding how this particular drug works and how it can be safely taken is very important.
So what are corticosteroids, you ask? Corticosteroids are closely related to cortisol, a hormone that is naturally produced in the adrenal cortex, or the outer layer of the adrenal gland. Cortisol helps to control the salt and water balance in the body, and to regulate carbohydrate, fat, and protein metabolism. When the body becomes stressed, the pituitary gland in your brain releases the adrenocorticotropic hormone which stimulates adrenals to produce cortisol (it usually produces up to 20 mg a day). The extra cortisol allows the body to cope with infection, trauma, surgery, or emotional problems.
Overall, corticosteroids are used to control inflammation of the joints and organs. They act on the immune system by stopping the production of substances that trigger inflammation in your body parts. They are usually doctor prescribed, but may also be found in many over the counter drugs (but in very small doses) such as nose drops, inhalers, ointments, and eyedrops. They can be administered orally, injected into the specific inflamed joints that are in pain, the veins, or the muscles, or applied as a lotion.
Consequences for taking this drug over longer-than-recommended periods of time include fat and protein retention, pancreatic exhaustion, diabetes, heart palpitations, hot flashes, sweating, and insomnia. For patients taking it even longer than that, effects are mch more serious. These side effects include bone deformities, increased blood pressure, mental changes, or glucose intolerance. The high possiblity of long-term usage to be dangerous is the reason for the rule that corticosteroids must be tampered with 10% every ten days for any given patient.
In 1948, at the Mayo Clinic in Rochester, Minnesota a group of arthritis patients were given daily injections of a corticosteroid. The results were impeccable! The patients could not believe how well this drug worked- it was a miracle. Because of the great results, this medication was thought to be the cure for arthritis. As corticosteroids became more popular, the side effects started to be realized. More and more people were taking more that they should have been. Sure, the medicine completely fixed the symptoms originally, but were they causing more trouble than they were curing? Soon, patients started to become afraid of taking corticosteroids, and the drug because more conservative and often declined. Understanding how this particular drug works and how it can be safely taken is very important.
So what are corticosteroids, you ask? Corticosteroids are closely related to cortisol, a hormone that is naturally produced in the adrenal cortex, or the outer layer of the adrenal gland. Cortisol helps to control the salt and water balance in the body, and to regulate carbohydrate, fat, and protein metabolism. When the body becomes stressed, the pituitary gland in your brain releases the adrenocorticotropic hormone which stimulates adrenals to produce cortisol (it usually produces up to 20 mg a day). The extra cortisol allows the body to cope with infection, trauma, surgery, or emotional problems.
Overall, corticosteroids are used to control inflammation of the joints and organs. They act on the immune system by stopping the production of substances that trigger inflammation in your body parts. They are usually doctor prescribed, but may also be found in many over the counter drugs (but in very small doses) such as nose drops, inhalers, ointments, and eyedrops. They can be administered orally, injected into the specific inflamed joints that are in pain, the veins, or the muscles, or applied as a lotion.
Consequences for taking this drug over longer-than-recommended periods of time include fat and protein retention, pancreatic exhaustion, diabetes, heart palpitations, hot flashes, sweating, and insomnia. For patients taking it even longer than that, effects are mch more serious. These side effects include bone deformities, increased blood pressure, mental changes, or glucose intolerance. The high possiblity of long-term usage to be dangerous is the reason for the rule that corticosteroids must be tampered with 10% every ten days for any given patient.
Saturday, July 24, 2010
WOMEN and STRENGTH
The other night, while searching the web, I came across the website www.focusonfemales.com. The site fascinated me. At just a first glance, the page grabbed my attention and interest. The bright purple and orange colors and the big “FOCUS on Females” sign caught my eye first. I looked around and noticed something… this would be great to post on my blog!
As we probably already know from my previous posts, Sjogren’s syndrome affects predominantly women. This website is a great resource for both women struggling with the illness as well as family members searching for somewhere to turn to for advice or “what to expect.”
A Women’s Healthcare Symposium was held this past March 27th, and other seminars, classes, and screenings have been held as well. This coming October, on Sundays from 1-2PM, a clinic is starting on Talk Radio 630AM WGUL with host Dr. Steven L. Maskin of the Dry Eye and Cornea Treatment Center. Also shown on the page is a calendar of events and broadcasts.
If you scroll down a little more towards the bottom to middle part of the homepage of this website, you can see the podcasts recorded with the date and topic and doctor listed next to each other in a row. You can listen to any of the broadcasts that you are interested in and take advice or even jot down some notes for yourself.
The best part is… It is free and available to the public! If you click the “2008” and “2009” numbers, you can see the podcasts recorded over the past couple of years as well. The information available to you is incredible.
I really hope that sharing this website with you was both inspiring and helpful. Getting your voice out there and listening to what others have to say is a healthy part of the coping, hoping, and recovering process!!!
As we probably already know from my previous posts, Sjogren’s syndrome affects predominantly women. This website is a great resource for both women struggling with the illness as well as family members searching for somewhere to turn to for advice or “what to expect.”
A Women’s Healthcare Symposium was held this past March 27th, and other seminars, classes, and screenings have been held as well. This coming October, on Sundays from 1-2PM, a clinic is starting on Talk Radio 630AM WGUL with host Dr. Steven L. Maskin of the Dry Eye and Cornea Treatment Center. Also shown on the page is a calendar of events and broadcasts.
If you scroll down a little more towards the bottom to middle part of the homepage of this website, you can see the podcasts recorded with the date and topic and doctor listed next to each other in a row. You can listen to any of the broadcasts that you are interested in and take advice or even jot down some notes for yourself.
The best part is… It is free and available to the public! If you click the “2008” and “2009” numbers, you can see the podcasts recorded over the past couple of years as well. The information available to you is incredible.
I really hope that sharing this website with you was both inspiring and helpful. Getting your voice out there and listening to what others have to say is a healthy part of the coping, hoping, and recovering process!!!
Monday, July 19, 2010
Methotrexate
Methotrexate is a common medication that is prescribed to patients diagnosed with Sjogren’s syndrome and other autoimmune diseases. Methotrexate replaced the more powerful and toxic antifolate aminopterin starting in the 1950s. The two medications should not be confused. It interferes with the growth of certain cells of the body that reproduce quickly and excessively. The most common illnesses it is used to treat are cancer, severe psoriasis, and rheumatoid arthritis (large doses of methotrexate are used in chemotherapy). In the 1940's, methotrexate was developed for leukemia therapy. The first attempt to use it against rheumatoid arthritis was reported in 1951. Methotrexate is a last resource drug- it is usually administered when other medications have failed to help.
Possible side effects of administering methotrexate include anemia, neutropenia, bruising, hair loss, nausea, vomiting, dermatitis, and diarrhea. A small percentage deve;op hepatitis and pulmonary fibrosis.
The Food and Drug Administration (FDA) approved methotrexate, and puts it in category “X” on pregnancy because it can cause birth defects in unborn children and should absolutely not be used if you are pregnant or you are breast feeding. This is important for the male party as well when conceiving a child. Nether parent or partner should be taking the medication. It is important that both partners use a preventative form of birth control. However, in a methotrexate abortion, it stops embryonic cells from dividing and multiplying and is a non-surgical method of ending pregnancy in its early stages. Within a few days or weeks of receiving an injection of methotrexate (MTX) at the clinic, the pregnancy ends through an experience similar to an early miscarriage. It has been successfully used since 1982 in a single dose to treat ectopic (tubal) pregnancies (where the fertilized egg is embedded in the fallopian tube instead of the uterus).
The drug works like this… A certain dosage (depending on how serious the illness) is administered once a week or once a day. After a certain period of time, the drug is stopped and the progress of the patient and cell count is noted. Methotrexate is used to regulate numbers and figures, not sustain for life.
Prices of different amounts of methotrexate vary. Methotrexate is available in 2.5-mg tablets as a generic or a brand-name dose pack called Rheumatrex. The dose packs consist of four cards with two, three, four, five or six 2.5-mg tablets. The cost for a weekly dose (7.5 to 15.0 mg) of methotrexate tablets ranges from $6 to $15 for the generic product and from $9 to $22 for Rheumatrex. The weekly cost for methotrexate injection (generic only) ranges from $6 to $25.
If you are prescribed methotrexate, RateADrug.com has a plethora of sample surveys from other patients who have taken it. Take a look at common side effects and stories experiences on the website by the patients who took this medication (as well as many others). And Good Luck!
Possible side effects of administering methotrexate include anemia, neutropenia, bruising, hair loss, nausea, vomiting, dermatitis, and diarrhea. A small percentage deve;op hepatitis and pulmonary fibrosis.
The Food and Drug Administration (FDA) approved methotrexate, and puts it in category “X” on pregnancy because it can cause birth defects in unborn children and should absolutely not be used if you are pregnant or you are breast feeding. This is important for the male party as well when conceiving a child. Nether parent or partner should be taking the medication. It is important that both partners use a preventative form of birth control. However, in a methotrexate abortion, it stops embryonic cells from dividing and multiplying and is a non-surgical method of ending pregnancy in its early stages. Within a few days or weeks of receiving an injection of methotrexate (MTX) at the clinic, the pregnancy ends through an experience similar to an early miscarriage. It has been successfully used since 1982 in a single dose to treat ectopic (tubal) pregnancies (where the fertilized egg is embedded in the fallopian tube instead of the uterus).
The drug works like this… A certain dosage (depending on how serious the illness) is administered once a week or once a day. After a certain period of time, the drug is stopped and the progress of the patient and cell count is noted. Methotrexate is used to regulate numbers and figures, not sustain for life.
Prices of different amounts of methotrexate vary. Methotrexate is available in 2.5-mg tablets as a generic or a brand-name dose pack called Rheumatrex. The dose packs consist of four cards with two, three, four, five or six 2.5-mg tablets. The cost for a weekly dose (7.5 to 15.0 mg) of methotrexate tablets ranges from $6 to $15 for the generic product and from $9 to $22 for Rheumatrex. The weekly cost for methotrexate injection (generic only) ranges from $6 to $25.
If you are prescribed methotrexate, RateADrug.com has a plethora of sample surveys from other patients who have taken it. Take a look at common side effects and stories experiences on the website by the patients who took this medication (as well as many others). And Good Luck!
Monday, July 5, 2010
My Story
My mom was diagnosed with Sjogren's syndrome two years ago. The whole story starts a while before that, though. My mom was experiencing chronic fatigue and loss of energy, her mouth was dry and had gum sores, she had trouble swallowing her food and digesting it, and a bunch of other problems. She went to her doctor with her symptoms and he did not have a clue what was wrong. We looked everything up on the internet (which was a very bad idea... it only made things worse! Doctors need to see you in PERSON to determine what is going on with your body). She was sent to specialists all over New York City. It was so scary and nerve-racking. After visiting dozens of professionals, it was finally diagnosed that she had Lupus. Soon later, it was diagnosed that she had Deep Vein Thrombosis as well. Then Fibromyalgia. Then Arthritis. What next, the flu? Impossible-she did not have all of these things. My confidence in these doctors was shaken, as was their confidence in the diagnoses. It was frightening. I was scared.
From a primary point of view, the struggle of determining what was going on inside my mother's body was both stressful and difficult. If we didn't know what she had, how were we about to treat it?
One of the many hematologists she visited suggested that she had Sjogren's syndrome, a very common yet underestimated disease that primarily effects women. Not many people know of this disease (so it has become a goal of mine to teach about it). This scared me even more, because if it was so rare, then how could it possibly be fixed? I was wrong, though. It wasn't rare, it was everywhere... doctors just don't know much about it because it is so very newly discovered.
Anyway, remembering this slight notion from the hematologist, my mother, after years of not knowing what she had, my mom went for bunch of tests and found out that she did in fact have a dormant-type of Sjogren's syndrome--a kind that showed itself rarely and subtly. This made no sense to me then, and it makes no sense to me now. All I know is, if doctors now know what is wrong with her, then maybe they can fix it.
Since then, my mom has been on Plaquenil and a dozen of other medications. No one is sure how to treat this disease. Its causes have not even been determined yet. She has even experimented and taken small doses of the pill-form of chemotherapy (THAT was hard to see...). Her symptoms are getting better, but she is developing other symptoms of other illnesses.
If it wasn't for the diagnosis of Sjogren's syndrome, we would still be baffled and nervous at her condition. Thankfully, she is getting better, and now my family and I just need to deal with her other ailments.
I take care of her, pray, and thank God.
From a primary point of view, the struggle of determining what was going on inside my mother's body was both stressful and difficult. If we didn't know what she had, how were we about to treat it?
One of the many hematologists she visited suggested that she had Sjogren's syndrome, a very common yet underestimated disease that primarily effects women. Not many people know of this disease (so it has become a goal of mine to teach about it). This scared me even more, because if it was so rare, then how could it possibly be fixed? I was wrong, though. It wasn't rare, it was everywhere... doctors just don't know much about it because it is so very newly discovered.
Anyway, remembering this slight notion from the hematologist, my mother, after years of not knowing what she had, my mom went for bunch of tests and found out that she did in fact have a dormant-type of Sjogren's syndrome--a kind that showed itself rarely and subtly. This made no sense to me then, and it makes no sense to me now. All I know is, if doctors now know what is wrong with her, then maybe they can fix it.
Since then, my mom has been on Plaquenil and a dozen of other medications. No one is sure how to treat this disease. Its causes have not even been determined yet. She has even experimented and taken small doses of the pill-form of chemotherapy (THAT was hard to see...). Her symptoms are getting better, but she is developing other symptoms of other illnesses.
If it wasn't for the diagnosis of Sjogren's syndrome, we would still be baffled and nervous at her condition. Thankfully, she is getting better, and now my family and I just need to deal with her other ailments.
I take care of her, pray, and thank God.
Wednesday, June 30, 2010
Testing
You feel and think that you have all of the symptoms of Sjogren’s syndrome. But how do you know for sure so you can start helping to treat it? The first step is visiting your doctor.
The doctor will conduct a complete physical check-up as well as inquire about your family history. There are common tests for detecting Sjogren’s syndrome in different places of the body.
The doctor may dye your eyes by dropping a liquid onto the bottom eye lid and allowing your natural blinking to spread the liquid around. The areas of the eye that are injured will be detected by the colored liquid. Rose bengal or lissamine green are the usual colors used. Slit lamp procedure may take place as well.
Then there’s the Schirmer test, which measures tears to see how the lacrimal gland is working.This procedure can be performed in two ways: one way, the doctor places thin paper strips under the eye lids and allows the papers to collect tears for 5 minutes. The moisture and amount of tears is then deduced (the average Sjogren’s patient produces less than 8mm of tears). The second way uses a cotton swab to induce and stimulate tear production/reflect through the nasal passage.
A sample of saliva may be taken by your doctor. Then a simple examination will be conducted in which the doctor looks for swollen salivary glands, dryness, stickiness, cracked lips, mouth sores, thickness of saliva, or cavities.
Your doctor may want to further examine the efficiency of your salivary glands by taking a biopsy of your lower lip. By looking at the sample under the microscope, lymphocytic patterns can detect if Sjogren’s syndrome is present.
Generally, you are considered to have Sjogren's if you have dry eyes, dry mouth, and a positive lip biopsy. But the doctor may decide to do additional tests to see whether other parts of the body are affected.
Routine blood tests can detect sugar level and kidney reproduction. Immunological tests check for antibodies commonly found in a Sjogren’s syndrome patient’s blood. (For example, Antithyroid antibodies, Immunoglobulins and gamma globulins, Rheumatoid factors (RFs), antinuclear antibodies (ANAs), or Sjogren’s Antibodies (SS-A, or SS-Ro or SS-La). X-Rays can show inflammation in the lungs, which is common in Sjogen’s syndrome patients as well. Urinalysis tests how well your kidneys function.
If any of these tests, but not all, are conducted and come back positive, get a second opinion. Sjogren’s syndrome is known as a “hiding” illness because it is hard to detect and can be masked by something else or impersonating something else. Sometimes, Sjogren’s syndrome is very commonly misdiagnosed. If you do in fact have the disease, do not panic. Although it is not curable, it is treatable and not fatal. There are plenty of support groups you can join and places where you can share your experiences and help others diagnose their illness.
The doctor will conduct a complete physical check-up as well as inquire about your family history. There are common tests for detecting Sjogren’s syndrome in different places of the body.
The doctor may dye your eyes by dropping a liquid onto the bottom eye lid and allowing your natural blinking to spread the liquid around. The areas of the eye that are injured will be detected by the colored liquid. Rose bengal or lissamine green are the usual colors used. Slit lamp procedure may take place as well.
Then there’s the Schirmer test, which measures tears to see how the lacrimal gland is working.This procedure can be performed in two ways: one way, the doctor places thin paper strips under the eye lids and allows the papers to collect tears for 5 minutes. The moisture and amount of tears is then deduced (the average Sjogren’s patient produces less than 8mm of tears). The second way uses a cotton swab to induce and stimulate tear production/reflect through the nasal passage.
A sample of saliva may be taken by your doctor. Then a simple examination will be conducted in which the doctor looks for swollen salivary glands, dryness, stickiness, cracked lips, mouth sores, thickness of saliva, or cavities.
Your doctor may want to further examine the efficiency of your salivary glands by taking a biopsy of your lower lip. By looking at the sample under the microscope, lymphocytic patterns can detect if Sjogren’s syndrome is present.
Generally, you are considered to have Sjogren's if you have dry eyes, dry mouth, and a positive lip biopsy. But the doctor may decide to do additional tests to see whether other parts of the body are affected.
Routine blood tests can detect sugar level and kidney reproduction. Immunological tests check for antibodies commonly found in a Sjogren’s syndrome patient’s blood. (For example, Antithyroid antibodies, Immunoglobulins and gamma globulins, Rheumatoid factors (RFs), antinuclear antibodies (ANAs), or Sjogren’s Antibodies (SS-A, or SS-Ro or SS-La). X-Rays can show inflammation in the lungs, which is common in Sjogen’s syndrome patients as well. Urinalysis tests how well your kidneys function.
If any of these tests, but not all, are conducted and come back positive, get a second opinion. Sjogren’s syndrome is known as a “hiding” illness because it is hard to detect and can be masked by something else or impersonating something else. Sometimes, Sjogren’s syndrome is very commonly misdiagnosed. If you do in fact have the disease, do not panic. Although it is not curable, it is treatable and not fatal. There are plenty of support groups you can join and places where you can share your experiences and help others diagnose their illness.
Sunday, June 20, 2010
Empower Yourself
If ever a person is to go through a traumatic experience, the most important and healthy remedy is a support system. It is scientifically proven that the power and force in numbers creates unity amongst masses and that they can move past obstacles of even the most difficult times if they stick together. Health support groups are perhaps the most popular, and yes, the most helpful. The resources that are provided and available are endless, and no one will feel alone. It is possible to defeat the impossible.
Through research of my own, I came across a Sjogren’s Syndrome support system that is expressed through a conference or seminar.
Every April in San Francisco, California, the Sjogren’s Syndrome Foundation holds a SSF National Patient Conference called “Empower Yourself” in which both Sjogren’s Syndrome patients and their families are welcome. Last year, the conference was a success. This past April, it was equally successful, but more populated than last year. As the years go by, word about the conference spreads. As a Sjogren’s Syndrome informant, it is my job to keep you updated on awesome events such as this one.
The aim of the conference is to educate Sjogren’s victims and their families about the illness and how it affects your body. The amount of new information about the disease is overwhelming, and many may be confused or intimidated by the various affects. “Experienced” patients, healthcare professionals, and other experts all speak at the conference so that the audience gets a taste of the illness from every angle, and all are speakers are available for private questions and concerns. What better way to take control of your health than to learn from the best minds?
The two-day-event includes dozens of doctors from every field in which Sjogren’s Syndrome affects, from eye-care provders to rheumatologists, and from dentists to autoimmune specialists and researchers. The presentation explores an illness overview, the neuropathy of Sjogren’s, CNS Disease, “A Patient’s Perspective in Survival”, lung complications, the doctor/patient relationship, dry mouth and eye issues, nutrition and diet, and heart disease/autoimmune disease relations (and probably a discussion about the difference between Primary and Secondary Sjogren’s).
I have not been to this conference yet, but it seems like a great event to be part of! The price per SSF member and their families is $165, and the price for non-members is $190 (the high expense goes to thanking the specialists for their time and towards research and the foundation!) For more information about next year’s events, (and other events to go to), contact 800-475-6473.
Through research of my own, I came across a Sjogren’s Syndrome support system that is expressed through a conference or seminar.
Every April in San Francisco, California, the Sjogren’s Syndrome Foundation holds a SSF National Patient Conference called “Empower Yourself” in which both Sjogren’s Syndrome patients and their families are welcome. Last year, the conference was a success. This past April, it was equally successful, but more populated than last year. As the years go by, word about the conference spreads. As a Sjogren’s Syndrome informant, it is my job to keep you updated on awesome events such as this one.
The aim of the conference is to educate Sjogren’s victims and their families about the illness and how it affects your body. The amount of new information about the disease is overwhelming, and many may be confused or intimidated by the various affects. “Experienced” patients, healthcare professionals, and other experts all speak at the conference so that the audience gets a taste of the illness from every angle, and all are speakers are available for private questions and concerns. What better way to take control of your health than to learn from the best minds?
The two-day-event includes dozens of doctors from every field in which Sjogren’s Syndrome affects, from eye-care provders to rheumatologists, and from dentists to autoimmune specialists and researchers. The presentation explores an illness overview, the neuropathy of Sjogren’s, CNS Disease, “A Patient’s Perspective in Survival”, lung complications, the doctor/patient relationship, dry mouth and eye issues, nutrition and diet, and heart disease/autoimmune disease relations (and probably a discussion about the difference between Primary and Secondary Sjogren’s).
I have not been to this conference yet, but it seems like a great event to be part of! The price per SSF member and their families is $165, and the price for non-members is $190 (the high expense goes to thanking the specialists for their time and towards research and the foundation!) For more information about next year’s events, (and other events to go to), contact 800-475-6473.
Saturday, June 12, 2010
Sjogren’s Diet
Sjogren’s Syndrome patients can slow down the progression of their Sjogren’s if they pick up the habit of a good diet. Most of the time, dietary suggestions (which prove to be most helpful to mitigate flare-ups) are to avoid spicy foods, foods hard in consistency, avoiding alcohol, wine, and beer, and avoiding acidic fruits, juices, and vegetables. These cases either further dry out the mouth or irritate dry mouth. In few cases, it is also recommended that gluten-free foods be eaten (although that is usually just for patients who have celiac disease). It is important to notice which foods make you feel better and which make your disease worsen, because even though these dietary habits are usually helpful, every person is different, especially since Sjogren’s Syndrome can be linked to many other different diseases that call for their own precautions.
Many Sjogren’s patients find it easier to always make sure a liquid food or substance is being consumed with every meal. For instance, use gravy, mayonnaise, soups, sauces, dairy products, or dressings, or even just try dipping foods into your drink (for example, cookies in coffee). Food processors are an important kitchen item to own so that you can bring your food to the point of liquefying. Add skim milk, broth, water, or margarine to foods, as well, to create liquid and help the food swallow and digest better. Using straws is also a good way to remind yourself to keep sipping as you eat and help the food move down into your digestive track quicker.
Avoiding caffeine is very important. Coffees and teas should only be consumed if they are decaffeinated. Also, increasing the overall percentage of vegetable and fruit intake and decreasing the overall percentage of grains can make you feel ten times better.
Smooth, soft, and creamy foods are the best. Foods cooked until they are tender are easiest for digestion, even if the food is meat! In addition, high calorie and cold liquids such as milk shakes, instant breakfast drinks, or liquid nutritional supplements are helpful for both calories and easy eating. Hot, salty, acidic, crunchy, dry, and spicy foods should be avoided at all costs. They aggravate a dry digestive track and can scrape or scar the lining.
Studies have shown that Sjogren’s patients who change their eating habits have decreased pain and symptom flare-ups. By adopting these few eating practice, you can be pain-free!
Many Sjogren’s patients find it easier to always make sure a liquid food or substance is being consumed with every meal. For instance, use gravy, mayonnaise, soups, sauces, dairy products, or dressings, or even just try dipping foods into your drink (for example, cookies in coffee). Food processors are an important kitchen item to own so that you can bring your food to the point of liquefying. Add skim milk, broth, water, or margarine to foods, as well, to create liquid and help the food swallow and digest better. Using straws is also a good way to remind yourself to keep sipping as you eat and help the food move down into your digestive track quicker.
Avoiding caffeine is very important. Coffees and teas should only be consumed if they are decaffeinated. Also, increasing the overall percentage of vegetable and fruit intake and decreasing the overall percentage of grains can make you feel ten times better.
Smooth, soft, and creamy foods are the best. Foods cooked until they are tender are easiest for digestion, even if the food is meat! In addition, high calorie and cold liquids such as milk shakes, instant breakfast drinks, or liquid nutritional supplements are helpful for both calories and easy eating. Hot, salty, acidic, crunchy, dry, and spicy foods should be avoided at all costs. They aggravate a dry digestive track and can scrape or scar the lining.
Studies have shown that Sjogren’s patients who change their eating habits have decreased pain and symptom flare-ups. By adopting these few eating practice, you can be pain-free!
Friday, June 4, 2010
Plaquenil; a source of comfort or risk?
One of the most common medications prescribed to treat Sjogren’s Syndrome is Plaquenil. It is considered an older disease-modifying and anti-rheumatic drug or DMARD. It being a DMARD, it is a slow-acting drug and may take up to six months before full benefits of Plaquenil are realized. Plaquenil is actually a type of anti-malarials (meaning it prevents/treats malaria and is common in Africa), but it is also used for autoimmune conditions unrelated to that disease. Plaquenil’s main purpose is to decrease pain, swelling, and the chance of joint damage. Doctors are still not 100% sure of how it works, and for that reason, it is not recommended to become pregnant or start Plaquenil while pregnant. Birth control should be administered throughout the time taking Plaquenil.
The average starting dosage is Plaquenil is 200mg twice a day or 400 mg once a day. Patients should be regulated either more or less doses a day based on reaction to it in the beginning stages. If the dosage given is too much, toxicity is a high risk that develops quickly. There are safety warnings when using Plaquenil that should be noticed in an effort to minimize side effects. Although it can be a highly helpful disease, different reactions may cause you to think: is taking this medication work the risk? Or is taking the medication in your best interest?
Plaquenil is prescribed to patients who cannot tolerate new biologic DMARDs. Even though the new meds received FDA-approval in 1998 and subsequent years, Plaquenil had not become less prescribed because of patients who are afraid to try newer products or patients who are just content with the quality of life that is provided by the Plaquenil.
The common side effects of Plaquenil include nausea and diarrhea. Taking the medication with solid foods can solve that problem for most patients. Less common side effects which may or may not be tied to Plaquenil include skin rashes, hair thinning, and weakness. A rare side effect of Plaquenil involves visual changes or loss of vision. Blindness may or may not be reversible when you stop taking the Plaquenil. If abnormalities occur, toxicity has developed and dosage should be stopped immediately.
Some patients are just more susceptible to vision problems. People at higher risk include people who have been prescribed Plaquenil for many years, are over the age of sixty, or have kidney problems. All patients should et opthamoligic examinations before being prescribed Plaquenil, and if the patient's initial opthalmologic examination is normal and the patient is considered low risk, the patient does not have to be retested for five years. It is recommended that high risk patients have annual eye examinations. Certain drugs taken along with Plaquenil may also heighten the risk of side effects. These common supplements include antacids, methotrexate, metoprolol, penicillamine, dignoxin, kaolin, botulinum toxins, or magnesium trisilicate.
The average starting dosage is Plaquenil is 200mg twice a day or 400 mg once a day. Patients should be regulated either more or less doses a day based on reaction to it in the beginning stages. If the dosage given is too much, toxicity is a high risk that develops quickly. There are safety warnings when using Plaquenil that should be noticed in an effort to minimize side effects. Although it can be a highly helpful disease, different reactions may cause you to think: is taking this medication work the risk? Or is taking the medication in your best interest?
Plaquenil is prescribed to patients who cannot tolerate new biologic DMARDs. Even though the new meds received FDA-approval in 1998 and subsequent years, Plaquenil had not become less prescribed because of patients who are afraid to try newer products or patients who are just content with the quality of life that is provided by the Plaquenil.
The common side effects of Plaquenil include nausea and diarrhea. Taking the medication with solid foods can solve that problem for most patients. Less common side effects which may or may not be tied to Plaquenil include skin rashes, hair thinning, and weakness. A rare side effect of Plaquenil involves visual changes or loss of vision. Blindness may or may not be reversible when you stop taking the Plaquenil. If abnormalities occur, toxicity has developed and dosage should be stopped immediately.
Some patients are just more susceptible to vision problems. People at higher risk include people who have been prescribed Plaquenil for many years, are over the age of sixty, or have kidney problems. All patients should et opthamoligic examinations before being prescribed Plaquenil, and if the patient's initial opthalmologic examination is normal and the patient is considered low risk, the patient does not have to be retested for five years. It is recommended that high risk patients have annual eye examinations. Certain drugs taken along with Plaquenil may also heighten the risk of side effects. These common supplements include antacids, methotrexate, metoprolol, penicillamine, dignoxin, kaolin, botulinum toxins, or magnesium trisilicate.
Saturday, May 29, 2010
Existing Treatments… or Lackthereof
Unfortunately, there are no cures for Sjogren's Syndrome. But, the good news is, it can be treated and controlled. By staying hydrated and following simple steps or even getting certain procedures done, the effects of Sjogren's can be mitigated and discomfort and harm can be reduced.
Some of the less common side affects may include fatigue, flexibility, and joint and muscle pain. These can be treated with simple routine exercises to get the blood pumping and reduce stiffness.
Other more common symptoms include dryness in the mouth, nose, and eyes. For mouth dryness, mouth hygiene is key. It may not prevent dry mouth completely, but it prevents infection and cavities in the event of excessive mouth dryness. Toothpastes and oral gels containing low doses of peroxide are available as over the counter medications. Make sure there are not high doses of peroxide… this will just increase dryness. These products also may have antibacterial action to reduce the severity of dental cavities over a long period of time.
Try sucking on candy and sipping water, or even chewing gum often to increase saliva production. Or simply use saliva stimulants, such as pilocarpine (Salagen) and cevimeline (Evoxac).
For dry nose, moistening nose drops are available for over-the-counter purchase at a convenient cost. Keeping the nasal passages damp is necessary not only to slow down progression of Sjogren’s, but also to avoid and protect against bacterial and viral diseases that usually-moist-nasal passages catch. Humidifiers may also help retain moisture, especially during the night as you sleep and air passages become more dry than usual.
Dry eyes can be helped by artificial tears and eyedrops and ointments. Also, reducing the time using the blowdrier may contribute. If you are a smoker, smoking dehydrates the body and blood vessels, so try to quit- or if that doesn’t help, reduce your smoking habits. If the dryness becomes more significant, your ophthalmologist can plug the tear duct closed so that tears cover the eye longer. Cyclosporine eyedrops (Restasis) are recently approved medicated drops that can reduce the inflammation of the tear glands improving their function. Signs of eye infection such as conjunctivitis, puss, or excessive redness or pain, need close attention to be paid to them. It may be more serious than it seems. A flare up may occur.
Common medications used to treat Sjogren’s include Plaquenil and Prednizone. Surgery is not a recommended solution for a patient with Sjogren’s Syndrome, (1) because it does not help anything and (2) because a person with Sjogren’s Syndrome typically takes medications or has naturally thinning blood. Proceding with surgery, blood clotting and healing may be difficult and sometimes fatal. A Patient with Sjogren’s Syndrome should always take extreme precaution when making decisions such as these.
Some of the less common side affects may include fatigue, flexibility, and joint and muscle pain. These can be treated with simple routine exercises to get the blood pumping and reduce stiffness.
Other more common symptoms include dryness in the mouth, nose, and eyes. For mouth dryness, mouth hygiene is key. It may not prevent dry mouth completely, but it prevents infection and cavities in the event of excessive mouth dryness. Toothpastes and oral gels containing low doses of peroxide are available as over the counter medications. Make sure there are not high doses of peroxide… this will just increase dryness. These products also may have antibacterial action to reduce the severity of dental cavities over a long period of time.
Try sucking on candy and sipping water, or even chewing gum often to increase saliva production. Or simply use saliva stimulants, such as pilocarpine (Salagen) and cevimeline (Evoxac).
For dry nose, moistening nose drops are available for over-the-counter purchase at a convenient cost. Keeping the nasal passages damp is necessary not only to slow down progression of Sjogren’s, but also to avoid and protect against bacterial and viral diseases that usually-moist-nasal passages catch. Humidifiers may also help retain moisture, especially during the night as you sleep and air passages become more dry than usual.
Dry eyes can be helped by artificial tears and eyedrops and ointments. Also, reducing the time using the blowdrier may contribute. If you are a smoker, smoking dehydrates the body and blood vessels, so try to quit- or if that doesn’t help, reduce your smoking habits. If the dryness becomes more significant, your ophthalmologist can plug the tear duct closed so that tears cover the eye longer. Cyclosporine eyedrops (Restasis) are recently approved medicated drops that can reduce the inflammation of the tear glands improving their function. Signs of eye infection such as conjunctivitis, puss, or excessive redness or pain, need close attention to be paid to them. It may be more serious than it seems. A flare up may occur.
Common medications used to treat Sjogren’s include Plaquenil and Prednizone. Surgery is not a recommended solution for a patient with Sjogren’s Syndrome, (1) because it does not help anything and (2) because a person with Sjogren’s Syndrome typically takes medications or has naturally thinning blood. Proceding with surgery, blood clotting and healing may be difficult and sometimes fatal. A Patient with Sjogren’s Syndrome should always take extreme precaution when making decisions such as these.
Thursday, May 20, 2010
(Mis)Diagnosing Sjogren's
Sjogren's Syndrome is an autoimmune disease that affects more than four million people in the United States, 90% of them being women, mostly between the ages of 35 and 45. Half of those who are diagnosed with Sjogren's Syndrome today experienced common symptoms such as dry mouth or dry eyes for three or more years before receiving an accurate diagnosis from a healthcare professional. While lack of patient-physician dialogue about symptoms is partly to blame, there are many other diseases that have very similar effects as Sjogren's. More attention to individual symptoms of patients as well as better research on the disease itself should be conducted.
In brief, the Sjogren's Syndrome illness causes the immune cells in the body to attack and destroy moisture-producing glands which results in dry mouth and eyes. Additional symptoms include fatigue, joint pain, digestive problems and overall dryness, and more severe symptoms can arise if the disease is not properly diagnosed and treated, such as blindness, loss of memory, loss of taste and smell, etc. There are two problems in the medical field today when it comes to Sjogren's Syndrome; one problem is that it is only treatable, not curable. The other problem is that it is often misdiagnosed as another illness because there are many other diseases that share similar characteristics to that of Sjogren's. This means that late-diagnosed patients have to live the rest of their lives with the already-progressed and un-curable disease. We need to descrease the percentage of patients misdiagnosed so that Sjogren's victims can be treated at an early stage (Sjogren's can be very serious, but not fatal).
The diseases that it can be confused with are often linked to Sjogren's, meaning they are often present along with it. (There are three types of Sjogren's: (1)sicca complex, which is just dry eyes and mouth, (2)primary, which encompasses all of the traditional symptoms, such as dryness and fatigue, and (3)secondary, which is a combination of primary along with another autoimmune disease). The illnesses that are similar to Sjogren's are: Fibromyalgia, Lupus, Arthritis (...and I am sure there are many more to add to the list).
In the event that you are diagnosed with any of these illnesses, or not diagnosed by any, and you feel the symptoms of dryness, do not try to combat the dryness with drinking more water.
Doing so can actually wash away existing saliva which contains beneficial components not found in water, and thereby make dry-mouth symptoms worse. If this is happening to you, tell your healthcare professional. Speaking up to your doctors is one of the most important ways to avoid misdiagnosis. You could have something more or less serious than you think...
In brief, the Sjogren's Syndrome illness causes the immune cells in the body to attack and destroy moisture-producing glands which results in dry mouth and eyes. Additional symptoms include fatigue, joint pain, digestive problems and overall dryness, and more severe symptoms can arise if the disease is not properly diagnosed and treated, such as blindness, loss of memory, loss of taste and smell, etc. There are two problems in the medical field today when it comes to Sjogren's Syndrome; one problem is that it is only treatable, not curable. The other problem is that it is often misdiagnosed as another illness because there are many other diseases that share similar characteristics to that of Sjogren's. This means that late-diagnosed patients have to live the rest of their lives with the already-progressed and un-curable disease. We need to descrease the percentage of patients misdiagnosed so that Sjogren's victims can be treated at an early stage (Sjogren's can be very serious, but not fatal).
The diseases that it can be confused with are often linked to Sjogren's, meaning they are often present along with it. (There are three types of Sjogren's: (1)sicca complex, which is just dry eyes and mouth, (2)primary, which encompasses all of the traditional symptoms, such as dryness and fatigue, and (3)secondary, which is a combination of primary along with another autoimmune disease). The illnesses that are similar to Sjogren's are: Fibromyalgia, Lupus, Arthritis (...and I am sure there are many more to add to the list).
In the event that you are diagnosed with any of these illnesses, or not diagnosed by any, and you feel the symptoms of dryness, do not try to combat the dryness with drinking more water.
Doing so can actually wash away existing saliva which contains beneficial components not found in water, and thereby make dry-mouth symptoms worse. If this is happening to you, tell your healthcare professional. Speaking up to your doctors is one of the most important ways to avoid misdiagnosis. You could have something more or less serious than you think...
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