In the midst of summer, outdoor activities are prevalent for many people. Trips to the beach, pool, park or zoo can make beautiful memories. Yet, for lupus sufferers, protection from the damaging effects of the sun become paramount to protect ourselves from cutaneous and systemic lupus flares. Being armed with sun protective information will help you make tons of memories with loved ones while keeping yourself safe in the process.
Time to learn our A,B,C's when it comes to sun protection! Most people are aware that the ultraviolet rays from the sun cause sunburns. However, there are three different kinds of ultraviolet rays with two kinds causing the agonizing summer sunburns and flares in people with lupus. Termed UVA, UVB and UVC, the ultraviolet rays allow trees to grow so to speak, but UVA and UVB are the main culprits in sunburns and flares. UVB rays cause cell damage and the burn that we are all accustomed to at one or more times in our lives while UVA rays penetrate deeper into the skin known as the dermis causing cutaneous and systemic lupus flares. The best defense is a great offense and sunscreens along with protective clothing are important tools in minimizing UV rays and flare potential.
Some sunscreens that you may want to invest in are those that cover BOTH types of rays - UVA and UVB. Since there are a ton of products out there, please ask your pharmacist and/or doctor for help if confused. After all, that is what we are here to do! Looking for an SPF factor of 15 or greater is key to protecting against the UVB rays that cause sunburn and cancer, but it does not mean that the product covers UVA. Please make certain that the product covers both UVA and UVB. According to Lupus Now, the best product available is Meroxyl. Once again, ask your dermatologist/rheumatologist and pharmacist the best one for you taking into consideration cost and preference.
Another point to mention is that sunscreen must be reapplied according to the product that is being used. Some need reapplication every 2 hours while others mention that sweating and/or getting wet requires reapplication every 40 to 80 minutes. Additionally, be aware that it takes 30 minutes for the body to absorb the sunscreen. Moreover, hats with at least a 4 inch surrounding brim, sunglasses that surround the eye to protect from all sides with at least 99% UV protection is great, wearing sun protective clothing, and limiting exposure during 10am to 2 pm can help reduce sunburn and those nasty flares.
Lastly, UV rays can penetrate windows, and flourescent lights are known to induce flares as well. Even on cloudy days, UV rays will penetrate. So, keeping sun protection throughout the day is a great idea, and there are protective plastic covers that can be put over the lights.
Lots to keep in mind, but worth the effort to keep those summer memories coming and flares caused by the sun a thing of yesterday!
Remember, keep the hope for a better tomorrow, the wind at our sails, and as my exercise guru says "Don't forget to smile!"
Happy Summer everyone:)
Thursday, June 27, 2013
Tuesday, May 7, 2013
Lupus Awareness Month!!!
The month of May has been designated Lupus Awareness month, and there are lots of things people can do to support these efforts to raise awareness on this enigma of a disease. Look to your local Lupus Foundation of America chapters for information about the events they have scheduled for this wonderful month. If you are into 5k/walks, there are several throughout the country that are specifically for lupus. The Lupus Foundation of America (www.lupus.org) has activities listed on their own website with links to different states. Also, Cure4Lupus.org has a calendar of events for all over the country. So, check those out too!
If walks/runs are not your thing, then consider wearing purple on May 17th. Wearing purple shows your support for lupus research as well as those that are suffering from this disease. Some people are putting up purple lights around their homes and businesses to show support too! What a wonderful sight it will be for lupus sufferers to see a ton of purple on that day. Keep May 10th in mind as well. It's considered World Lupus Day to bring more attention to this puzzling disease.
Lupus knows no distinction and no boundaries. Anyone, including celebrities, may be stricken. From the likes of Nick Cannon to Toni Braxton and even a famous soccer athlete such as two-time Olympic Gold Medalist Shannon Boxx. Please listen to their inspiring stories!!!
May this day bring joy and peace to all!!!
Happy Lupus Awareness Month everyone!!!
If walks/runs are not your thing, then consider wearing purple on May 17th. Wearing purple shows your support for lupus research as well as those that are suffering from this disease. Some people are putting up purple lights around their homes and businesses to show support too! What a wonderful sight it will be for lupus sufferers to see a ton of purple on that day. Keep May 10th in mind as well. It's considered World Lupus Day to bring more attention to this puzzling disease.
Lupus knows no distinction and no boundaries. Anyone, including celebrities, may be stricken. From the likes of Nick Cannon to Toni Braxton and even a famous soccer athlete such as two-time Olympic Gold Medalist Shannon Boxx. Please listen to their inspiring stories!!!
May this day bring joy and peace to all!!!
Happy Lupus Awareness Month everyone!!!
He has not learned the lesson of life who does not every day surmount a fear.
Ralph Waldo Emerson
Ralph Waldo Emerson
Wednesday, March 27, 2013
Spring Has Sprung!
We are entering Spring which is probably one of my most favorite times of the year. The lush green leaves that bud, the colorful blossoms that emerge just remind me how wonderful life can be. Spring brings a sense of rebirth that most everyone can appreciate. As I sit looking into the bright sunshine out my bedroom window, I smile knowing that another season has burst forth to be enjoyed and lived. As I smell the beautiful flowers, I inhale their sweet aromas and know that however poorly I may feel, this too shall pass, and I'm compelled to bask in the glory of the moment.
As I have mentioned on a previous post, I have been "trying" to exercise. In fact, I am "trying" to train for a half marathon. Oblivious as I can be at times, I did not know until the end of last year that there are several half marathons around the country that may be walked or run. I with my lupus will never attempt running a half marathon due to doctor's orders, but I could definitely try and walk one! So, with my twenty something determination in an almost 40 year old body, I set out to accomplish said goal in approximately a years time. Unfortunately, my almost 40 year old body clashed with my 20 something mind, and I've been sick off and on since last November. However, I've done remarkably well on the walking part. It's just the illnesses I keep picking up due to my poor immune system that's had me almost bed ridden for a month and fevers that prohibit me from attempting to walk, but never-the-less Spring has sprung! With this new hop in my step, I begin, yet again, to train for my race! I have been told patience is a virtue, and one that I've been forced to practice, but I am determined.
So, where am I in my months of training you say? I've gradually worked my way up to a six mile walk. However, due to illness I'm back down to walking 3 to 4 miles at a time about four to five days a week. It feels great to finally get back on track so to speak, but I realize that the next several months may be a repeat of the last five, and that's okay. One of these days, I'll be able to reach my goal whether that's in four months or another year. The point is that I keep trying, and I keep setting goals regardless of how my lupus is doing. Sitting idly by has never been my strong suit. I've always wanted to just do something.
Even though illness has yet again hit my household, and me with it, I will not be dejected. I laugh in the face of adversity, and I will take the opportunities that Spring brings to renew my spirit and body because life is definitely worth living:)
Wishing everyone a very safe and Happy Easter!!!
As I have mentioned on a previous post, I have been "trying" to exercise. In fact, I am "trying" to train for a half marathon. Oblivious as I can be at times, I did not know until the end of last year that there are several half marathons around the country that may be walked or run. I with my lupus will never attempt running a half marathon due to doctor's orders, but I could definitely try and walk one! So, with my twenty something determination in an almost 40 year old body, I set out to accomplish said goal in approximately a years time. Unfortunately, my almost 40 year old body clashed with my 20 something mind, and I've been sick off and on since last November. However, I've done remarkably well on the walking part. It's just the illnesses I keep picking up due to my poor immune system that's had me almost bed ridden for a month and fevers that prohibit me from attempting to walk, but never-the-less Spring has sprung! With this new hop in my step, I begin, yet again, to train for my race! I have been told patience is a virtue, and one that I've been forced to practice, but I am determined.
So, where am I in my months of training you say? I've gradually worked my way up to a six mile walk. However, due to illness I'm back down to walking 3 to 4 miles at a time about four to five days a week. It feels great to finally get back on track so to speak, but I realize that the next several months may be a repeat of the last five, and that's okay. One of these days, I'll be able to reach my goal whether that's in four months or another year. The point is that I keep trying, and I keep setting goals regardless of how my lupus is doing. Sitting idly by has never been my strong suit. I've always wanted to just do something.
Even though illness has yet again hit my household, and me with it, I will not be dejected. I laugh in the face of adversity, and I will take the opportunities that Spring brings to renew my spirit and body because life is definitely worth living:)
Wishing everyone a very safe and Happy Easter!!!
Tuesday, February 26, 2013
Sick Yet Again!
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
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 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!
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