Hello Lupus friends!
In the world of lupus, one begins to understand what a "compromised" immune system means rather quickly even in people classified as having mild disease. The disease and treatment medications can weaken our immune system making us more susceptible to illnesses stemming from the common cold, and influenza, increasing the chances of getting yeast infections, urinary tract infections, upper respiratory tract infections, sinus infections, and more prone to herpes viral eruptions and reactivation of the chicken pox virus in the form of shingles.1,2, 3
We are and have been in the season of flu and colds, and it has most definitely hit my home in full force. The gnarly, unwelcome and much detested upper respiratory viral infection, invading not just my town but all of America, reared its ugly head in my eldest son four weeks ago. Knowing he has an awesome immune system, I was hoping he would get better like he always does in a day or so. Wrong! This was the first sign that I was definitely in trouble because he got worse, but eventually got better about 6 days later. In the mean time, my middle child started to get sick two days after her big brother. She always gets sick for a couple of days, but this really hit her hard. She missed an entire week of school which was also a red flag. However, it was when my youngest son started the coughing fit, congestion, a nose that fit more of a description of a faucet that I knew I was in trouble. He started getting sick about 5 days after his sister, and he went from bad to worse in a matter of a few hours. All in all we took him to the pediatrician twice before they diagnosed him with RSV.
Now, for those of you who are not familiar with RSV it stands for Respiratory Syncytial Virus which is a dangerous virus in infants and young children that infects the lungs and breathing passages requiring hospitalizations in many babies, especially premature babies, and may result in death. While my son was wheezing and keeping me up all night making sure he kept breathing, we were very fortunate not to have to hospitalize him. Unfortunately for me, it meant weeks of illness not only for my children but myself.
According to my doctor and that of many sources, adults don't get RSV per say. An adults immune system is strong enough to fight it off or only get a minor cold from it. Of course, I laugh in the face of science because this momma has gotten so very sick. I not only got what the children had, but I got excessive fatigue, and an exceptionally sore throat making the day-to-day operations of a household near impossible. A "normal" adult would get over something of this nature in 5 to 7 days, but no, not me! LOL We are over two weeks and counting. Valentine's Day had me in the doctor's office getting a steroid shot, strong course of antibiotics as I had incurred a sinus infection and double ear infections which finally cleared up the majority of the mess in a little over two weeks. Unfortunately, two days after feeling near "normal" for me, I woke up this morning with a cough that felt like an infection was trying to get into my lungs, sore throat, runny nose, fever, and horrible overall fatigue and aches.
I will survive this, but I wanted everyone out there who does not have this enigmatic disease to try and understand that a common cold can put someone with lupus down for several weeks. I've been sick now for going on three weeks, and I'm not even sure if I'll have to go back to the doctor for more medicine. It will probably take me a full week or more to get back to my "normal" after this new ailment which could be a relapse or who knows what else the kids brought home:) Oh the sharing!!! LOL The most important advice to date is to wash hands repeatedly throughout the day. However, I have some people in my family who would consider me obsessive compulsive about washing my hands, but I still have gotten exceptionally ill. So, do your best about cleaning and washing hands, and then don't worry about the rest. Illness is apart of everyone's life, but with lupus you just have to prepare for the worst and hope for the best along with rolling with the punches so to speak!
Never let life's hardships disturb you...
no one can avoid problems, not even
saints or sages.
Nichiren Daishonen
All the best to my lupus friends!
References:
1. Hidalgo-Tenorio C et al. Urinary tract infections and lupus erythematosus. Ann Rheum Dis. 2004 April;63(4):431-437.
2. Mayo Clinic. Lupus. Accessed on February 26, 2013 at http://www.mayoclinic.com/health/lupus/DS00115
3. Lupus Foundation of America. Infections and immunizations. Accessed on February 26, 2013 at www.lupus.org
Tuesday, February 26, 2013
Tuesday, February 5, 2013
Time for laughing!
Life never seems to slow down or get less hectic. The dance lessons, swim lessons, school lessons never seem to end, and sometimes you just want to tell the world to halt cause you want to get off! While there is the time to just plug through endless doctor's appointments and lessons, it is always important to sneak in one of life's lessons every once in awhile. Smiling, laughing and letting loose never did hurt anyone!
My life lesson I learned today is never let a child play with quarters around the shredding machine. Now, I know some of you are shrieking in horror at the thought of any child around a shredding machine. So, let me preface this by saying that our shredding machine is ALWAYS unplugged with our outlets plugged with kid safe devices. The chance of my 2 year old unplugging the outlet are zero to none because it's difficult for my lupus free husband to get out. Having cleared that up, it was quite the surprise this morning when I plugged in the shredder and started to shred receipts, and the noise of various metals crunching compelled me to quickly shut the machine off. Upon further investigation, the source of the anomaly was a crunched up quarter that would have been useful in a variety of ways considering that most families these days are prone to shake the couches for various types of lost coinage.
Now, a person could:
A) yell, scream, shout and do the angry dance all the while lining up the kids in the proverbial "line" to intricately question them as to "Who Dun It" with every mother around knowing the answer will always be "I don't know" OR
B) start laughing so hard that every cell in your being rejoices for the momentary release of mounting tension that's been building for months and with joyful tears in your eyes rejoice that life has not forgotten you and tell yourself that this was the best spent quarter that you've had in a very long time
So, which one did I choose? Well, I chose option B because these moments are precious, and it's better to laugh it off than increase my blood pressure and do more bodily harm than the lupus is already doing!
My wish for you today, my friends, is to laugh off the stressful moments even though it IS difficult at times. I know I will always remember these events fondly even when my children are grown and have flown the coop. I wish for lupus sufferers, caregivers and friends the best belly laugh today that will leave tears streaming down your faces!
Happy thoughts sent your way!
Sunday, January 6, 2013
Revlimid® for Cutaneous Lupus Erythematosus
Good news in the lupus world as new drugs are again being developed to combat the multiple issues that people with lupus face on a daily basis. We are seeing new uses for old drugs and drug classes that are not considered brand new but are welcome none the less. Thalidomide is one such dinosaur that is currently being used and perfected to create other less toxic medicinal options.
Thalidomide was first marketed in the 1950s as a sedative but became widely used to combat morning sickness until evidence of devastating birth defects became known. Thalidomide has been effectively used around the world for inflammatory skin conditions, including lupus, since the 1970s.1,2
In the United States, thalidomide was first FDA approved in 1998 for its effectiveness in moderate to severe forms of erythema nodosum leprosum (ENL) of the skin that is a complication of leprosy. Moreover, thalidomide is used in combination with dexamethasone for people diagnosed with multiple myeloma. However, thalidomide has significant side effects with some considered life-threatening such as birth defects and venous thromboembolic events like deep vein thrombosis (blood clots) and pulmonary embolisms (lung clots). Other side effects include:
Lenalidomide (Revlimid®) is the newest medicine being studied in people with cutaneous lupus erythematosus (CLE) especially in those not responding to currently approved medications. While designed to be less toxic, Revlimid® is still in the same class as thalidomide. Estimates of 25% to 30% of people with CLE are unresponsive to traditionally approved medications such as antimalarials, topical steroids and various other immunosuppressive medications.1,5,6
Revlimid® was developed in the 1990s and has been FDA approved for multiple myeloma and myelodysplastic syndrome. As an anti-inflammatory medicine, lenalidomide is reportedly 2000 times more effective than thalidomide.5 Additionally, it has been shown to be less toxic than thalidomide with fewer reports of common side effects like fatigue, constipation and nerve damage (neuropathy). While the frequency of common side effects may be less, they can still occur and monitoring must be done. Moreover, severe warnings exist (black box warnings) for lenalidomide such as myelosuppression, deep vein thrombosis, pulmonary embolism and birth defects. Myelosuppression consists of fewer while blood cells, red blood cells and platelets while deep vein thrombosis is a disorder that simply means clot forming.5,7
In a nutshell, lenalidomide has shown promise in people who have not shown significant response to traditional medicines. It is extremely important to combat resistant CLE cases before permanent scarring and disfigurement occur. A big downfall of treatment with either medications lie in their side effect profiles, but as in any severe disease, harder core drugs tend to be used. So, it is promising that lenalidomide has fewer occurrences of side effects ad better anti-inflammatory properties than thalidomide. Expect more studies in the future focusing on the effectiveness and safety of lenalidomide on CLE as it is currently not approved for the condition yet. While medicinal research breakthroughs for lupus in the past 50 years has been scarce, it is great to see a new vigor aimed at developing new medicines for lupus.
(The above article is for information purposes only. Consult a doctor and pharmacist for individual medical needs.)
References:
1. Cortes-Hernandez J, Torres-Salido M, Castro-Marrero J, Vilardell-Tarres M and Ordi-Ros J. Thalidomide in the treatment of refractory cutaneous lupus erythematosus: prognostic factors of clinical outcome. Brit J Derm. 2012;166:616-623.
2. Perri III AJ and Hsu S. A review of thalidomide's history and current dermatological applications. Dermatology Online Journal. 2003;9(3):5.
3. Hamburg M. 50 years after thalidomide: why regulation matters. Accessed on January 6, 2013 at http://blogs.fda.gov/fdavoice/index.php/2012/02/50-years-after-thalidomide-why-regulation-matters/
4. Thalidomide [Prescribing Information]. Celegen Corporation 2010. Accessed on January 6, 2013 at http://thalomid.com/thalomid_pi.aspx
5. Shah et al. Lenalidomide for the treatment of resistant discoid lupus erythematosus. Arch Dermatol. 2009;145(3);303-306
6. BioMed Central. Lenalidomide offers an effective alternative treatment for cutaneous lupus erythematosus. Medical News Today. MediLexicon, Intl., 10 Dec. 2012. Web. 19 Dec. 2012. Accessed at <http://www.medicalnewstoday.com/releases/253753.php>
7. Lenalidomide [Prescribing Information]. Celegen Corporation 2012. Accessed on January 6, 2013 at www.revlimid.com/
Thalidomide was first marketed in the 1950s as a sedative but became widely used to combat morning sickness until evidence of devastating birth defects became known. Thalidomide has been effectively used around the world for inflammatory skin conditions, including lupus, since the 1970s.1,2
In the United States, thalidomide was first FDA approved in 1998 for its effectiveness in moderate to severe forms of erythema nodosum leprosum (ENL) of the skin that is a complication of leprosy. Moreover, thalidomide is used in combination with dexamethasone for people diagnosed with multiple myeloma. However, thalidomide has significant side effects with some considered life-threatening such as birth defects and venous thromboembolic events like deep vein thrombosis (blood clots) and pulmonary embolisms (lung clots). Other side effects include:
- Drowsiness/Fatigue
- Peripheral neuropathy (nerve damage)
- Orthostatic hypotension (fainting upon standing)
- Neutropenia (low white blood cell count)
- Bradycardia (slow heartbeat)
- Stevens-Johnson and Toxic Epidermal Necrolysis (severe skin conditions that may be fatal)
- Seizures
Lenalidomide (Revlimid®) is the newest medicine being studied in people with cutaneous lupus erythematosus (CLE) especially in those not responding to currently approved medications. While designed to be less toxic, Revlimid® is still in the same class as thalidomide. Estimates of 25% to 30% of people with CLE are unresponsive to traditionally approved medications such as antimalarials, topical steroids and various other immunosuppressive medications.1,5,6
Revlimid® was developed in the 1990s and has been FDA approved for multiple myeloma and myelodysplastic syndrome. As an anti-inflammatory medicine, lenalidomide is reportedly 2000 times more effective than thalidomide.5 Additionally, it has been shown to be less toxic than thalidomide with fewer reports of common side effects like fatigue, constipation and nerve damage (neuropathy). While the frequency of common side effects may be less, they can still occur and monitoring must be done. Moreover, severe warnings exist (black box warnings) for lenalidomide such as myelosuppression, deep vein thrombosis, pulmonary embolism and birth defects. Myelosuppression consists of fewer while blood cells, red blood cells and platelets while deep vein thrombosis is a disorder that simply means clot forming.5,7
In a nutshell, lenalidomide has shown promise in people who have not shown significant response to traditional medicines. It is extremely important to combat resistant CLE cases before permanent scarring and disfigurement occur. A big downfall of treatment with either medications lie in their side effect profiles, but as in any severe disease, harder core drugs tend to be used. So, it is promising that lenalidomide has fewer occurrences of side effects ad better anti-inflammatory properties than thalidomide. Expect more studies in the future focusing on the effectiveness and safety of lenalidomide on CLE as it is currently not approved for the condition yet. While medicinal research breakthroughs for lupus in the past 50 years has been scarce, it is great to see a new vigor aimed at developing new medicines for lupus.
(The above article is for information purposes only. Consult a doctor and pharmacist for individual medical needs.)
References:
1. Cortes-Hernandez J, Torres-Salido M, Castro-Marrero J, Vilardell-Tarres M and Ordi-Ros J. Thalidomide in the treatment of refractory cutaneous lupus erythematosus: prognostic factors of clinical outcome. Brit J Derm. 2012;166:616-623.
2. Perri III AJ and Hsu S. A review of thalidomide's history and current dermatological applications. Dermatology Online Journal. 2003;9(3):5.
3. Hamburg M. 50 years after thalidomide: why regulation matters. Accessed on January 6, 2013 at http://blogs.fda.gov/fdavoice/index.php/2012/02/50-years-after-thalidomide-why-regulation-matters/
4. Thalidomide [Prescribing Information]. Celegen Corporation 2010. Accessed on January 6, 2013 at http://thalomid.com/thalomid_pi.aspx
5. Shah et al. Lenalidomide for the treatment of resistant discoid lupus erythematosus. Arch Dermatol. 2009;145(3);303-306
6. BioMed Central. Lenalidomide offers an effective alternative treatment for cutaneous lupus erythematosus. Medical News Today. MediLexicon, Intl., 10 Dec. 2012. Web. 19 Dec. 2012. Accessed at <http://www.medicalnewstoday.com/releases/253753.php>
7. Lenalidomide [Prescribing Information]. Celegen Corporation 2012. Accessed on January 6, 2013 at www.revlimid.com/
Thursday, December 27, 2012
Exercising With Lupus
Happy Holidays! Hoping everyone is having a wonderful holiday season. As with any celebration, eating tons of food goes along with the territory. Anyone with lupus or any other chronic autoimmune disease can attest to the fact that weight is almost always on the mind. Steroids and other chronic medications can make it extremely difficult to maintain or lose weight. Additionally, arthritis, fatigue and many other ailments with lupus can inhibit people from wanting to exercise. So, like millions of other Americans I've decided to begin an exercise regimen to combat this weighty issue. Again. Yes, I have been here several times before. My lupus usually rears its ugly head sometime during my exercise schedule leaving me with flu-like symptoms, fevers and severe arthritic pain, but I know heart disease is something that I want to avoid since it is especially prevalent in lupus.
Let me begin by saying that I am always careful to start slowly and work my way into a more moderate form of exercise. Unfortunately, my childhood pastime of running is completely out of the question. As a result of lupus, I have arthritis that has gotten much worse over the last couple of years. So, having already discussed forms of exercise with my rheumatologist, I have settled on a regimen of walking using a wonderful walking DVD that I can do in the home. As a side note, I always like to do exercise videos because I can shut them off if I start to feel poorly.
Day One is especially exhilarating as I love feeling my muscles work and building up a sweat. I have always loved to exercise. Consequently, not being able to do exercises that I have always loved to do has been extremely difficult for me to overcome mentally. Denial is inherent and initially present in most everything I try to do physically. However, I have learned over the last several years that believing I can exercise the same way my friends do will only end in pain, tears and many months of recuperation. So, I was very excited to begin my walking routine last night consisting of forty minutes of low impact walking activities. The burst of endorphins kept spirits high well into Day Two of my exercise routine. Tonight's routine consisted of just 30 minutes of moderate walking which left me feeling elated, but fatigued. Arthritis symptoms are worse, and flu-like symptoms have reappeared. Yet, I am not defeated. A day of rest will hopefully do the trick since I have an easy going and flexible regimen which is the key to any lupus exercise routine. I look forward to posting further updates on my exercise adventure as well as information on Revlimid® which is a new medication being tested for cutaneous lupus erythematosus (CLE). It is a drug similar to thalidomide that has been shown to significantly improve CLE in people unresponsive to other medications.
Again, I wish everyone a Happy New Year, and will post again soon!
Let me begin by saying that I am always careful to start slowly and work my way into a more moderate form of exercise. Unfortunately, my childhood pastime of running is completely out of the question. As a result of lupus, I have arthritis that has gotten much worse over the last couple of years. So, having already discussed forms of exercise with my rheumatologist, I have settled on a regimen of walking using a wonderful walking DVD that I can do in the home. As a side note, I always like to do exercise videos because I can shut them off if I start to feel poorly.
Day One is especially exhilarating as I love feeling my muscles work and building up a sweat. I have always loved to exercise. Consequently, not being able to do exercises that I have always loved to do has been extremely difficult for me to overcome mentally. Denial is inherent and initially present in most everything I try to do physically. However, I have learned over the last several years that believing I can exercise the same way my friends do will only end in pain, tears and many months of recuperation. So, I was very excited to begin my walking routine last night consisting of forty minutes of low impact walking activities. The burst of endorphins kept spirits high well into Day Two of my exercise routine. Tonight's routine consisted of just 30 minutes of moderate walking which left me feeling elated, but fatigued. Arthritis symptoms are worse, and flu-like symptoms have reappeared. Yet, I am not defeated. A day of rest will hopefully do the trick since I have an easy going and flexible regimen which is the key to any lupus exercise routine. I look forward to posting further updates on my exercise adventure as well as information on Revlimid® which is a new medication being tested for cutaneous lupus erythematosus (CLE). It is a drug similar to thalidomide that has been shown to significantly improve CLE in people unresponsive to other medications.
Again, I wish everyone a Happy New Year, and will post again soon!
Sunday, December 16, 2012
Hello to everyone in the lupus world, including loved ones touched by this disease. I've been living with lupus for over a decade and have a unique perspective on the disease as a licensed pharmacist. Friends and family alike have encouraged me along the way to continue my efforts in bringing clarity and awareness to everyone affected by this disease. My goal is to reduce anxiety when I can as well as arm people with the best lupus information possible in order to make great healthcare decisions.
Most people take a backseat approach to healthcare, following doctor's orders unquestioningly. While understandable, my approach encourages everyone, regardless of disease state whether it's lupus, diabetes or hypertension, to walk into their doctor's office with the most up-to-date information in order to discuss options of care, putting control back into the "patient's" hands.
This blog has been created to give lupus information to those who are in need or just curious as well as an outlet for me to catalog my life's adventure with lupus. I thank you for your interest and look forward to this new journey!
(This blog is for informational purposes only. Always seek your doctor's advice.)
Most people take a backseat approach to healthcare, following doctor's orders unquestioningly. While understandable, my approach encourages everyone, regardless of disease state whether it's lupus, diabetes or hypertension, to walk into their doctor's office with the most up-to-date information in order to discuss options of care, putting control back into the "patient's" hands.
This blog has been created to give lupus information to those who are in need or just curious as well as an outlet for me to catalog my life's adventure with lupus. I thank you for your interest and look forward to this new journey!
(This blog is for informational purposes only. Always seek your doctor's advice.)
Subscribe to:
Posts (Atom)