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.
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