During and between the 3 lupus flares I’ve had, one constant has been my companion- fibromyalgia. After the big scares have all passed- my kidneys are no longer failing, I’ve recovered from the stroke, the neuropathy has subsided, I can eat, the fever is gone, etc.- the pain is still there. But I find that the fibro pain doesn’t seem to register with my doctors, because it’s not measurable on a blood test or an X-ray. So over these 16 years of dealing with both lupus and fibro, I’ve been pretty much on my own in dealing with the fibro. I’m sure I’m not alone in my feeling alone.
I have tried so many things to remedy the fatigue, the tightness and pain in my upper back magnify when I lie down and keep me awake at night, the tenderness in my arms, and general irritability.
I tried chiropractic, acupunture, diet change, chi gong, stretching, ignoring and denying, popping lots of advil, massage, capsacum patches, icy hot, heating pad, gentle exercise, not-so-gentle exercise, miscellaneous detoxification methods, stress reduction, meditation, journalling, and staying educated. For me, I’d say the least effective of these techniques has been ignoring and denying, though for some reason I hung onto that one the longest. The most effective? Acupuncture, chi gong, detox (taking greens, using foot detox pads, milk thistle, filtered water, eating lots of fruits and veggies), stress management (such as writing a list of things I’m grateful for on a regular basis, setting realistic goals, and disengaging from people who aggravate me; I also take rescue remedy, a flower essence)), getting enough rest, diet change (getting rid of junk food and diet soda), and having fun. Laughing and smiling releases endorphins, which are our body’s natural pain killers.
Which brings me to one of my favorite therapies- songwriting. In 2002, during the worst of my health problems, I started writing ridiculous songs about my situation. It all started when I was doing the 24-hour urine collection test, where you have to pee in a jug for 24 hours then bring your big jug of pee in to the doctor the next morning. At the time, I was trying to work my way up to being able to play the guitar again (I had had a stroke), and was playing the ukelele. The first song in the uke book was the old folk song “little brown jug.” Back and forth between the frequent bathroom trips (I was on diuretics) and the ukelele, well of course my first parody was called “Little brown jug, about peeing in a jug.”
After this little breakthrough, I spent hours writing every day and brought my song idea notebook to every doctor appointment. Whenever I was left sitting in the waiting room for 2 hours or longer, I’d just sit there and work on my songs. Now instead of it being an indignity, it was an opportunity. And now, not only was I able to laugh about my situation, using humor helped me gain perspective and take back some control. If someone was especially rude to me, but I was in no position to fight back because they were the only doctor in town who took my medical insurance, then I’d wait ‘til I got home and write a song about them (and not usually a very nice one- but in my songwriting and journaling life, I can say anything I want).
[hear the songs: http://www.thesingingpatient.com]
While we can’t control our situation, or the actions of others, or even our bodily functions at times, the one thing we have control over is our response to any given situation. And in the end, that’s the most empowering thing of all. It is our choice whether this “thing” we’ve been given is a horrible burden, or even a gift that helps us to slow down and appreciate things around us that we never noticed when we were moving faster.
Tuesday, June 10, 2008
Fear Factor: Vitamin D
How interesting, and yet not surprising that we have a vitamin D deficiency in a culture where people spend their entire day indoors or in a car, train, mall, classroom, or bus. Vitamin D comes from: vitamins, vitamin-fortified milk (milk as a "health food" is another topic entirely) or other vitamin-fortified foods and, the only natural source of vitamin D: it is made by the body when the sunlight hits the skin.
A study found that 40% of children are vitamin-D deficient, which can cause thinning bones, rickets, seizures, a weakened immune system. http://www.reuters.com/article/latestCrisis/idUSN02317202 . They also found that drinking a lot of soda and being overweight were also factors that caused demineralization, or leaching of vitamin D and other important nutrients.
I think we as a culture are paranoid about the sun to the point of hurting ourselves by not getting enough of it (with the exception of those who lie in the sun for hours to the point of skin damage). According to this guy http://www.jonbarron.org/blog_published/2008/06/vitamin_d_deficiency_a_silent.html , the incidence of vitamin D deficiency increases in the winter, when there is less sun exposure. And people with darker skin need 3-6 times more the amount of sun exposure than those with lighter skin.
It's a great irony that lupus might be triggered by vitamin D deficiency, because lupus patients are specifically told to *always* avoid the sun. Some of them carry parasols or adjust their schedule so they only run errands after sunset. Those folks definitely need to get some vitamin D.
I am told that calcium doesn't absorb without vitamin D. It seems that folks with lupus really need to take a combination Calcium-vitamin D supplement (doctors usually recommend OsCal, which you can get over the counter), not just to make up for the lack of sun exposure, but also to protect against the bone-thinning caused by drug treatments such a steroids like Prednisone.
A study found that 40% of children are vitamin-D deficient, which can cause thinning bones, rickets, seizures, a weakened immune system. http://www.reuters.com/article/latestCrisis/idUSN02317202 . They also found that drinking a lot of soda and being overweight were also factors that caused demineralization, or leaching of vitamin D and other important nutrients.
I think we as a culture are paranoid about the sun to the point of hurting ourselves by not getting enough of it (with the exception of those who lie in the sun for hours to the point of skin damage). According to this guy http://www.jonbarron.org/blog_published/2008/06/vitamin_d_deficiency_a_silent.html , the incidence of vitamin D deficiency increases in the winter, when there is less sun exposure. And people with darker skin need 3-6 times more the amount of sun exposure than those with lighter skin.
It's a great irony that lupus might be triggered by vitamin D deficiency, because lupus patients are specifically told to *always* avoid the sun. Some of them carry parasols or adjust their schedule so they only run errands after sunset. Those folks definitely need to get some vitamin D.
I am told that calcium doesn't absorb without vitamin D. It seems that folks with lupus really need to take a combination Calcium-vitamin D supplement (doctors usually recommend OsCal, which you can get over the counter), not just to make up for the lack of sun exposure, but also to protect against the bone-thinning caused by drug treatments such a steroids like Prednisone.
Wednesday, May 28, 2008
how much too reveal
Some folks are very open about their illnesses. others refuse to discuss it. i can understand both sides of this. at first, i talked openly about having lupus. but i had so many negative reactions, with folks basically blaming me for getting sick, or worrying it was contagious, or treating me differently, or thinking i was a hypochondriac. One friend even told me to “get over it” because i’d been talking about it for like a year. (well, I still had it, i was still trying to come to terms with it, and those feelings were no less intense one year after diagnosis than they were one week after diganosis.)
I've learned I can’t expect people to get it if they haven’t had to deal with a serious illness. Trying to explain having to budget your energy to someone who's never been ill is like trying to explain to a trust fun baby why you can't just take off work and go to Mexico whenever you like. So, I choose where and where and to whom i speak about this. oddly, i find i can be very open about it online and people don’t attack me online. Usually people are polite in real life and rude online where they can be anonymous, but in the case of illness, i find it to be quite the opposite, because people are frightened by their own mortality and vulnerability, and we are walking reminders of both.
So while i may have come to terms with having lupus, I realize the rest of the world has a long way to go in coming to terms with their own vulnerabilities. My not talking about lupus openly amongst "earth people" has nothing to do with my own acceptance of the illness, as much as not wanting to subject myself to the weird and sometimes cruel responses of others. Which is something I have accepted.
I've learned I can’t expect people to get it if they haven’t had to deal with a serious illness. Trying to explain having to budget your energy to someone who's never been ill is like trying to explain to a trust fun baby why you can't just take off work and go to Mexico whenever you like. So, I choose where and where and to whom i speak about this. oddly, i find i can be very open about it online and people don’t attack me online. Usually people are polite in real life and rude online where they can be anonymous, but in the case of illness, i find it to be quite the opposite, because people are frightened by their own mortality and vulnerability, and we are walking reminders of both.
So while i may have come to terms with having lupus, I realize the rest of the world has a long way to go in coming to terms with their own vulnerabilities. My not talking about lupus openly amongst "earth people" has nothing to do with my own acceptance of the illness, as much as not wanting to subject myself to the weird and sometimes cruel responses of others. Which is something I have accepted.
Saturday, May 24, 2008
just say no to... vaccines.
when i tell my friends i refuse to get any more vaccines, they think i’m art of the lunatic fringe when i say that these things were grown in monkey tissues and cancer tissues.well whether I'm a lunatic or not is a completely separate subject. But on this subject of vaccines and immunity, I *read*! I read a *lot*. my life depends on my being informed. i’ve had 3 major episodes with my illness. i dont’ know what set off the initial disease (though my theory is environmental toxins, poor diet, and extreme stress), but *both* of the second 2 flares came shortly after getting a spider bite, then going to the dr and getting a tetanus shot. coincidence? I think not.
According to the book ”the autoimmune epidemic,” the rate of autoimmune disease has *tripled* since 1970, and only in industrialized nations. this is *not* a genetic illness. we really have to stop blaming everything on genetics. i think people do that because it relieves them of all responsibility for their own care.
We can’t afford to leave our lives and well being in the care of doctors. They are overburdened and cannot take that kind of responsibility. Anyone who leaves me in the waiting room for 45 minutes after my appointment time then charges me $200 for 8 minutes of their time and rushes me out the door does not deserve that kind of power in my life. They're not paying enough attention to make the decision as to whether i change my diet, do acupuncture, etc. I only talk to them about my pills and anything that might interact with my pills (and i read the freakin' tome of side effects and warnings that comes with each bottle of pills). I don't *reject* conventional medicine, as I would be dead if i did not accept their help and take drugs to control my illness. but i do not allow them to rule my every decision. They are very limited in what they can do to help regarding a chronic illness, and i know that. They know that. So after they stop me from dying, I go elsewhere to actually feel better and regain energy.
I also want to speak out against getting pets vaccinated repeatedly. I don’t think it’s a coincidence that pets are now developing things like leukemia, lupus and cancer. My cat died of bone cancer in 2002, about 8 days after i got out of the hospital.
Vaccines by nature are not sanitary. They are grown in monkey tissues and cancer cells! ew! There are those in the scientific community who say that the AIDs epidemic in san francisco was cause by the mass vaccination of the gay community against hepatitis (read "AIDs and Its Metaphors."). A growing number of parents are refusing to vaccinate their children. Many believe that SIDs (sudden infant death) the epidemic of autism are linked to vaccines. While there are a few vaccines that are still important (measles, mumps, rubella), most vaccines are unnecessary, and overload our bodies with mercury as well as an onslaught of germs and viruses. Children are given as many as 20 vaccines by age two.
Seventten young women have died and a Michigan high school student developed lupus after receiving the new gardasil ("anti-cancer") vaccine. What good does it do to protect against the slight possibility of cervical cancer if you develop lupus from the vaccine? (or die?!) http://www.mlive.com/flintjournal/index.ssf/2008/08/flint_teen_becomes_center_of_d.html
In this country our immune system is already being assaulted with stress, pollution, and crappy processed food. We don't need more toxins directly injected into us. Our immune systems are getting plenty challenged already.
If you are a parent who does not want to over-vaccinate your child, you can either home-school or refuse the vaccines "for religious reasons."
According to the book ”the autoimmune epidemic,” the rate of autoimmune disease has *tripled* since 1970, and only in industrialized nations. this is *not* a genetic illness. we really have to stop blaming everything on genetics. i think people do that because it relieves them of all responsibility for their own care.
We can’t afford to leave our lives and well being in the care of doctors. They are overburdened and cannot take that kind of responsibility. Anyone who leaves me in the waiting room for 45 minutes after my appointment time then charges me $200 for 8 minutes of their time and rushes me out the door does not deserve that kind of power in my life. They're not paying enough attention to make the decision as to whether i change my diet, do acupuncture, etc. I only talk to them about my pills and anything that might interact with my pills (and i read the freakin' tome of side effects and warnings that comes with each bottle of pills). I don't *reject* conventional medicine, as I would be dead if i did not accept their help and take drugs to control my illness. but i do not allow them to rule my every decision. They are very limited in what they can do to help regarding a chronic illness, and i know that. They know that. So after they stop me from dying, I go elsewhere to actually feel better and regain energy.
I also want to speak out against getting pets vaccinated repeatedly. I don’t think it’s a coincidence that pets are now developing things like leukemia, lupus and cancer. My cat died of bone cancer in 2002, about 8 days after i got out of the hospital.
Vaccines by nature are not sanitary. They are grown in monkey tissues and cancer cells! ew! There are those in the scientific community who say that the AIDs epidemic in san francisco was cause by the mass vaccination of the gay community against hepatitis (read "AIDs and Its Metaphors."). A growing number of parents are refusing to vaccinate their children. Many believe that SIDs (sudden infant death) the epidemic of autism are linked to vaccines. While there are a few vaccines that are still important (measles, mumps, rubella), most vaccines are unnecessary, and overload our bodies with mercury as well as an onslaught of germs and viruses. Children are given as many as 20 vaccines by age two.
Seventten young women have died and a Michigan high school student developed lupus after receiving the new gardasil ("anti-cancer") vaccine. What good does it do to protect against the slight possibility of cervical cancer if you develop lupus from the vaccine? (or die?!) http://www.mlive.com/flintjournal/index.ssf/2008/08/flint_teen_becomes_center_of_d.html
In this country our immune system is already being assaulted with stress, pollution, and crappy processed food. We don't need more toxins directly injected into us. Our immune systems are getting plenty challenged already.
If you are a parent who does not want to over-vaccinate your child, you can either home-school or refuse the vaccines "for religious reasons."
Sunday, April 27, 2008
All kinds of treatments out there for lupus
i thought i'd share this, which i found on
dailystrength.org.
this is a list of all the various treatments people
with lupus have tried. includes number of people who
tried it and percent of people who found it helpful.
Just like my surveymonkey.com survey, plaquenil and
prednisone top the list. not surprising, as prednisone
was the first drug used for SLE, and plaquenil was the
2nd.
Plaquenil Hydroxychloroquine is an antimalarial drug, 651 Members helps: 83% of the time
Prednisone synthetic corticosteroid 604 Members helps: 90% of the time
Naproxen non-steroidal anti-inflammatorydrug (NSAID) 15 Members 86% of the time
Cymbalta Duloxetine hydrochloride for major depression... 14 Members 93% of the time
Neurontin Gabapentin for the treatment of seizures and nerve damage/ pain... 13 Members 100% of the time
Folic Acid water-soluble B vitamin. 13 Members 100% of the time
Lyrica anticonvulsant drug used for neuropathic pain, 13 Members 100% of the time
Mobic nonsteroidal anti-inflammatory drug 11 Members 90% of the time
Dapsone antiinfective and immunosuppressive agent. 11 Members 73% of the time
Lexapro selective serotonin reuptake inhibitor or SSRI. (antidepressants) 10 Members 100% of the time
Topamax anticonvulsant drug used to treat epilepsy... 10 Members 100% of the time
Aspirin 9 Members 88% of the time
Tramadol opioid analgesic, 9 Members 67% of the time
Cytoxan Cyclophosphamide (chemo).. 9 Members 75% of the time
Lasix Furosemide diuretic for edema/ congestive heart failure 8 Members 100% of the time
Positive Thinking 8 Members 100% of the time
Support from Friends & Family 8 Members 100% of the time
Celebrex non-steroidal anti-inflammatory drug (NSAID) 193 Members helps: 58% of the time
Cellcept immunosuppresant drug used to prevent rejection of ogran transplants... 171 Members helps: 83%
of the time
Methotrexate MTX, amethopterin, 137 Members helps: 73% of the time
Medrol Methylprednisolone is a synthetic glucocorticoid 52 Members helps: 82% of the time
Azathioprine chemotherapy drug 51 Members helps: 69% of the time
Azathioprine chemotherapy drug 50 Members helps: 68% of the time
Cyclophosphamide nitrogen mustard alkylating agent, 35 Members helps: 71% of the time
Prayer 30 Members helps: 93% of the time
Rituxan Rituximab, MabThera®, 21 Members helps: 94% of the time
Coumadin anticoagulant 17 Members helps: 100% of the time [i have to insert here that my Uncle
nearly died because of coumadin]
Cyclosporine immunosuppressant drug widely used in organ transplants 17 Members helps: helps: 94%
of the time
Ibuprofen non-steroidal anti-inflammatory drug (NSAID). 16 Members helps: 88% [i have to
insert here that i was in love with Advil, but it nearly destroyed my kidneys because i was taking so
much of it for pain] of the time
Hydrocodone [vicodin] opioid 16 Members helps: 100% of the time
Ultram Tramadol opioid which is a centrally acting analgesic, 7 Members 100% of the time [note: cannot be taken with Paxil]
Laughter 7 Members 100% of the time
Morphine highly potent opiate analgesic drug 7 Members 100% of the time
Lipitor Atorvastatin A statin, used for lowering cholesterol...6 Members 100% of the time
Celexa Citalopram or nitalapram is an antidepressant drug 6 Members 100% of the time
Nexium Esomeprazole- proton pump inhibitor -reduces stomach acid... 6 Members 83% of the time
Fosamax Alendronate is a bisphosphonate drug used for osteoporosis 6 Members 100% of the time
Lisinopril (ACE) inhibitor(for high blood pressure) ... 6 Members 100% of the time
Feldene Piroxicam (is a non-steroidal anti-inflammatory 6 Members 83% of the time
Zoloft antidepressant 5 Members 80% of the time
Prevacid Lansoprazole lowers stomach acid. 5 Members 100% of the time
Oxycodone powerful and potentially addictive opioid 5 Members 100% of the time
Clonazepam benzodiazepine derivative. It is a highly potentanti... 5 Members 100% of the time
Cyclobenzaprine skeletal muscle relaxant and a central nervous system (CNS) depr... 5 Members 100% of the time
Elavil Amitriptyline hydrochloride is a tricyclic antidepressant drug. 5 Members 75% of the time
Cortisone (Injection) Steroid hormone. 5 Members 100% of the time
Vitamin D 5 Members 100% of the time
Sleep 5 Members 100% of the time
Calcium 5 Members 100% of the time
Enbrel Etanercept . recombinant human soluble tumor necrosis factor-alpha (TNFα) 5 Members 80%
of the time
Tylenol for relieving pain, reducing fever, 5 Members 80% of the time
Voltaren Diclofenac (marketed as Voltaren, Voltarol, Diclon, Dicloflex Difen, Difene, Cataflam... 5 Members 100%
of the time
Relafen Nabumetone is a non-steroidal anti-inflammatory drug 5 Members 100% of the time
Prilosec Omeprazole is a proton pump inhibitor -reduces stomach acid 4 Members 75% of the time
Physical Exercise 4 Members 100% of the time
Synthroid Levothyroxine is a synthetic form of thyroxine (thyroid hormone). 4 Members 100% of the time
Dextropropoxyphene Dextropropoxyphene is an analgesic in the opioid category. 4 Members 100% of the time
Gabapentin 4 Members 100%of the time
Meditation 4 Members 100% of the time
Zanaflex Tizanidine (Zanaflex) is a centrally acting a2-adrenergic agonist. 4 Members 100% of the time
Faith 4 Members 100% of the time
Anti-Inflammatory Diet 4 Members 100% of the time
Chiropractic Adjustment 4 Members 100% of the time
Hydroxychloroquine (Plaquenil) 4 Members 100% of the time
Cozaar Losartan is an angiotensin II receptor antagonist drug used mainly to treat high blood pressure 4 Members 100%
of the time
Toradol Toradol (ketorolac tromethamine) is a non-steroidal anti-inflammatory drug (NSAID) 4 Members 67%
of the time
Chemotherapy 3 Members 67% of the time
Psychotherapy 3 Members 100% of the time
Protonix Pantoprazole is a proton pump inhibitor drug used for reduction of stomach acid... 3 Members 100%
of the time
Zantac Ranitidine is a histamine H2-receptor antagonist that inhibits stomach acid productio... 3 Members 100%
of the time
Codeine opioid used for its analgesic, antitussive 3 Members 100% of the time
Acupuncture 3 Members 100% of the time
Indocin Indometacin or Indomethacin is a non-steroidal anti-inflammatory drug 3 Members 100%
of the time
Yoga 3 Members 100% of the time
Aciphex Rabeprazole is a proton pump inhibitor(reduces stomach acid) 3 Members 100% of the time
Humira Adalimumab (Humira�) is the third TNF antagonist (after infliximab and etanercep... 3 Members 100%
of the time
Arava for R.A. 3 Members 100% of the time
Fish Oil 3 Members 100% of the time
Azulfidine Sulfasalazine is a sulfa drug 3 Members 50% of the time
Daypro Oxaprozin nonnarcotic, nonsteroidal anti-inflammatory drug ... 3 Members 67% of the time
Clonidine for high blood pressure 3 Members 100% of the time
Robaxin Methocarbamol is a central muscle relaxant 3 Members 100% of the time
Heat 3 Members 100% of the time
Paxil Paroxetine or paroxetine hydrochloride - antidepressant 2 Members 100% of the time
Wellbutrin Bupropion (amfebutamone) (Zyban) is an antidepressant 2 Members 100% of the time
Effexor Venlafaxine hydrochloride antidepressants2 Members 100% of the time
Vioxx Rofecoxib is a nonsteroidal anti-inflammatory drug (NSAID) 2 Members 50% of the time
Atenolol beta blocker, 2 Members 100% of the time
Norvasc calcium channel blocker used as an anti-hypertensive 2 Members 100% of the time
Love 2 Members 100% of the time
Ativan Lorazepam -anti anxiety 2 Members 100% of the time
Zyrtec Cetirizine hydrochloride for allergies, hay fever... 2 Members 100% of the time
Potassium 2 Members 100% of the time
Trazodone psychoactive compound with sedative, anxiolytic, and antidepressant ... 2 Members 100% of the time
Doxycycline antibiotic 2 Members 100% of the time
Writing 2 Members 100% of the time
Massage 2 Members 100% of the time
Relaxation 100% of the time
Solumedrol adrenocortical steroid, methylprednisolone 2 Members 100% of the time
Lovenox Enoxaparin is a low molecular weight heparin manufactured 2 Members 100% of the time
Valerian Valeriana officinalis, Valerianaceae) is a hardy perennial flowering plant, 2 Members 100% of the time
Gluten Free Diet 2 Members 100% of the time
Holistic Health 2 Members 100% of the time
Education 2 Members 100% of the time
Provigil Modafinil Vigil Modalert 2 Members 100% of the time
Art 2 Members 100% of the time
Bactrim DS antibiotic 2 Members 100% of the time
Flexeril Cyclobenzaprine skeletal muscle relaxant 2 Members 100% of the time
TENS A Transcutaneous Electrical Nerve Stimulator 2 Members 100% of the time
Lodine Etodolac 2 Members 50% of the time
Procardia XL Nifedipine (brand name Adalat, Nifedical, and Procardia) for high BP 2 Members 100%
of the time
Rozerem Ramelteon, 2 Members 100% of the time
Music 2 Members 50% of the time
Pets 2 Members 50% of the time
Pain Management Clinic 2 Members 100% of the time
Trental Trental (pentoxifylline) to treat intermittent claudication 2 Members 100% of the time
Keeping Busy 2 Members 50% of the time
Clinoril Clinoril (sulindac) is a non-steroidal anti-inflammatory 2 Members 100% of the time
Walking 2 Members 100% of the time
Salagen Salagen (pilocarpine) used to treat dry mouth (xerostomia). 2 Members 100% of the time
Prozac Fluoxetine Hydrochloride is an antidepressant 1 Member 100% of the time
Claritin Loratadine to treatallergies. Read Reviews 1 Member 100% of the time
Physical Therapy 1 Member
Melatonin 1 Member 100% of the time
Ambien Zolpidem insomnia 1 Member 100% of the time
Valium Diazepam (Stesolid, Seduxen, Bosaurin and Apozepam... 1 Member 100% of the time
Ramipril (Tritace or Altace) is (ACE) inhibitor (for high BP)... 1 Member
Carisoprodol skeletal muscle relaxant 1 Member 100% of the time
Hydrocortisone Synthetic cortisol, 1 Member 100% of the time
Running 1 Member 100% of the time
Metoprolol beta1 receptor blocker 1 Member 100% of the time
Carvedilol non-selective beta blocker 100% of the time
Crying 1 Member 100% of the time
Depakote (calproate semisodium or divalproex sodium) 1 Member
Baclofen Baclofen (Kemstro® and Lioresal®) 1 Member 100% of the time
Keppra Levetiracetam is an anticonvulsant medication 1 Member 100%
of the time
Allopurinol used to treat gout. 1 Member 100% of the time
IVIG Intravenous immunoglobulin (IVIG) is a blood product 1 Member 100% of the time
Lunesta Eszopiclone,(sleep aid) 1 Member 100% of the time
Sonata Zaleplon (Starnoc®) sleep aid 1 Member 100% of the time
Imitrex Sumatriptan (Imigran,Imigran Recovery ) is a triptan drug 1 Member 100% of the time
Chloroquine anti-malarial. 1 Member 100% of the time
Corticosteroids(see also prednisone) 1 Member 0% of the time
Humex 100% of the time
Aqua Therapy 1 Member 100% of the time
Eating Healthier Foods 1 Member 100% of the time
Lamictal (lamotrigine) anticonvulsant 1 Member 100% of the time
Orthopedic Brace 1 Member 100% of the time
Marijuana 1 Member 100% of the time
dailystrength.org.
this is a list of all the various treatments people
with lupus have tried. includes number of people who
tried it and percent of people who found it helpful.
Just like my surveymonkey.com survey, plaquenil and
prednisone top the list. not surprising, as prednisone
was the first drug used for SLE, and plaquenil was the
2nd.
Plaquenil Hydroxychloroquine is an antimalarial drug, 651 Members helps: 83% of the time
Prednisone synthetic corticosteroid 604 Members helps: 90% of the time
Naproxen non-steroidal anti-inflammatorydrug (NSAID) 15 Members 86% of the time
Cymbalta Duloxetine hydrochloride for major depression... 14 Members 93% of the time
Neurontin Gabapentin for the treatment of seizures and nerve damage/ pain... 13 Members 100% of the time
Folic Acid water-soluble B vitamin. 13 Members 100% of the time
Lyrica anticonvulsant drug used for neuropathic pain, 13 Members 100% of the time
Mobic nonsteroidal anti-inflammatory drug 11 Members 90% of the time
Dapsone antiinfective and immunosuppressive agent. 11 Members 73% of the time
Lexapro selective serotonin reuptake inhibitor or SSRI. (antidepressants) 10 Members 100% of the time
Topamax anticonvulsant drug used to treat epilepsy... 10 Members 100% of the time
Aspirin 9 Members 88% of the time
Tramadol opioid analgesic, 9 Members 67% of the time
Cytoxan Cyclophosphamide (chemo).. 9 Members 75% of the time
Lasix Furosemide diuretic for edema/ congestive heart failure 8 Members 100% of the time
Positive Thinking 8 Members 100% of the time
Support from Friends & Family 8 Members 100% of the time
Celebrex non-steroidal anti-inflammatory drug (NSAID) 193 Members helps: 58% of the time
Cellcept immunosuppresant drug used to prevent rejection of ogran transplants... 171 Members helps: 83%
of the time
Methotrexate MTX, amethopterin, 137 Members helps: 73% of the time
Medrol Methylprednisolone is a synthetic glucocorticoid 52 Members helps: 82% of the time
Azathioprine chemotherapy drug 51 Members helps: 69% of the time
Azathioprine chemotherapy drug 50 Members helps: 68% of the time
Cyclophosphamide nitrogen mustard alkylating agent, 35 Members helps: 71% of the time
Prayer 30 Members helps: 93% of the time
Rituxan Rituximab, MabThera®, 21 Members helps: 94% of the time
Coumadin anticoagulant 17 Members helps: 100% of the time [i have to insert here that my Uncle
nearly died because of coumadin]
Cyclosporine immunosuppressant drug widely used in organ transplants 17 Members helps: helps: 94%
of the time
Ibuprofen non-steroidal anti-inflammatory drug (NSAID). 16 Members helps: 88% [i have to
insert here that i was in love with Advil, but it nearly destroyed my kidneys because i was taking so
much of it for pain] of the time
Hydrocodone [vicodin] opioid 16 Members helps: 100% of the time
Ultram Tramadol opioid which is a centrally acting analgesic, 7 Members 100% of the time [note: cannot be taken with Paxil]
Laughter 7 Members 100% of the time
Morphine highly potent opiate analgesic drug 7 Members 100% of the time
Lipitor Atorvastatin A statin, used for lowering cholesterol...6 Members 100% of the time
Celexa Citalopram or nitalapram is an antidepressant drug 6 Members 100% of the time
Nexium Esomeprazole- proton pump inhibitor -reduces stomach acid... 6 Members 83% of the time
Fosamax Alendronate is a bisphosphonate drug used for osteoporosis 6 Members 100% of the time
Lisinopril (ACE) inhibitor(for high blood pressure) ... 6 Members 100% of the time
Feldene Piroxicam (is a non-steroidal anti-inflammatory 6 Members 83% of the time
Zoloft antidepressant 5 Members 80% of the time
Prevacid Lansoprazole lowers stomach acid. 5 Members 100% of the time
Oxycodone powerful and potentially addictive opioid 5 Members 100% of the time
Clonazepam benzodiazepine derivative. It is a highly potentanti... 5 Members 100% of the time
Cyclobenzaprine skeletal muscle relaxant and a central nervous system (CNS) depr... 5 Members 100% of the time
Elavil Amitriptyline hydrochloride is a tricyclic antidepressant drug. 5 Members 75% of the time
Cortisone (Injection) Steroid hormone. 5 Members 100% of the time
Vitamin D 5 Members 100% of the time
Sleep 5 Members 100% of the time
Calcium 5 Members 100% of the time
Enbrel Etanercept . recombinant human soluble tumor necrosis factor-alpha (TNFα) 5 Members 80%
of the time
Tylenol for relieving pain, reducing fever, 5 Members 80% of the time
Voltaren Diclofenac (marketed as Voltaren, Voltarol, Diclon, Dicloflex Difen, Difene, Cataflam... 5 Members 100%
of the time
Relafen Nabumetone is a non-steroidal anti-inflammatory drug 5 Members 100% of the time
Prilosec Omeprazole is a proton pump inhibitor -reduces stomach acid 4 Members 75% of the time
Physical Exercise 4 Members 100% of the time
Synthroid Levothyroxine is a synthetic form of thyroxine (thyroid hormone). 4 Members 100% of the time
Dextropropoxyphene Dextropropoxyphene is an analgesic in the opioid category. 4 Members 100% of the time
Gabapentin 4 Members 100%of the time
Meditation 4 Members 100% of the time
Zanaflex Tizanidine (Zanaflex) is a centrally acting a2-adrenergic agonist. 4 Members 100% of the time
Faith 4 Members 100% of the time
Anti-Inflammatory Diet 4 Members 100% of the time
Chiropractic Adjustment 4 Members 100% of the time
Hydroxychloroquine (Plaquenil) 4 Members 100% of the time
Cozaar Losartan is an angiotensin II receptor antagonist drug used mainly to treat high blood pressure 4 Members 100%
of the time
Toradol Toradol (ketorolac tromethamine) is a non-steroidal anti-inflammatory drug (NSAID) 4 Members 67%
of the time
Chemotherapy 3 Members 67% of the time
Psychotherapy 3 Members 100% of the time
Protonix Pantoprazole is a proton pump inhibitor drug used for reduction of stomach acid... 3 Members 100%
of the time
Zantac Ranitidine is a histamine H2-receptor antagonist that inhibits stomach acid productio... 3 Members 100%
of the time
Codeine opioid used for its analgesic, antitussive 3 Members 100% of the time
Acupuncture 3 Members 100% of the time
Indocin Indometacin or Indomethacin is a non-steroidal anti-inflammatory drug 3 Members 100%
of the time
Yoga 3 Members 100% of the time
Aciphex Rabeprazole is a proton pump inhibitor(reduces stomach acid) 3 Members 100% of the time
Humira Adalimumab (Humira�) is the third TNF antagonist (after infliximab and etanercep... 3 Members 100%
of the time
Arava for R.A. 3 Members 100% of the time
Fish Oil 3 Members 100% of the time
Azulfidine Sulfasalazine is a sulfa drug 3 Members 50% of the time
Daypro Oxaprozin nonnarcotic, nonsteroidal anti-inflammatory drug ... 3 Members 67% of the time
Clonidine for high blood pressure 3 Members 100% of the time
Robaxin Methocarbamol is a central muscle relaxant 3 Members 100% of the time
Heat 3 Members 100% of the time
Paxil Paroxetine or paroxetine hydrochloride - antidepressant 2 Members 100% of the time
Wellbutrin Bupropion (amfebutamone) (Zyban) is an antidepressant 2 Members 100% of the time
Effexor Venlafaxine hydrochloride antidepressants2 Members 100% of the time
Vioxx Rofecoxib is a nonsteroidal anti-inflammatory drug (NSAID) 2 Members 50% of the time
Atenolol beta blocker, 2 Members 100% of the time
Norvasc calcium channel blocker used as an anti-hypertensive 2 Members 100% of the time
Love 2 Members 100% of the time
Ativan Lorazepam -anti anxiety 2 Members 100% of the time
Zyrtec Cetirizine hydrochloride for allergies, hay fever... 2 Members 100% of the time
Potassium 2 Members 100% of the time
Trazodone psychoactive compound with sedative, anxiolytic, and antidepressant ... 2 Members 100% of the time
Doxycycline antibiotic 2 Members 100% of the time
Writing 2 Members 100% of the time
Massage 2 Members 100% of the time
Relaxation 100% of the time
Solumedrol adrenocortical steroid, methylprednisolone 2 Members 100% of the time
Lovenox Enoxaparin is a low molecular weight heparin manufactured 2 Members 100% of the time
Valerian Valeriana officinalis, Valerianaceae) is a hardy perennial flowering plant, 2 Members 100% of the time
Gluten Free Diet 2 Members 100% of the time
Holistic Health 2 Members 100% of the time
Education 2 Members 100% of the time
Provigil Modafinil Vigil Modalert 2 Members 100% of the time
Art 2 Members 100% of the time
Bactrim DS antibiotic 2 Members 100% of the time
Flexeril Cyclobenzaprine skeletal muscle relaxant 2 Members 100% of the time
TENS A Transcutaneous Electrical Nerve Stimulator 2 Members 100% of the time
Lodine Etodolac 2 Members 50% of the time
Procardia XL Nifedipine (brand name Adalat, Nifedical, and Procardia) for high BP 2 Members 100%
of the time
Rozerem Ramelteon, 2 Members 100% of the time
Music 2 Members 50% of the time
Pets 2 Members 50% of the time
Pain Management Clinic 2 Members 100% of the time
Trental Trental (pentoxifylline) to treat intermittent claudication 2 Members 100% of the time
Keeping Busy 2 Members 50% of the time
Clinoril Clinoril (sulindac) is a non-steroidal anti-inflammatory 2 Members 100% of the time
Walking 2 Members 100% of the time
Salagen Salagen (pilocarpine) used to treat dry mouth (xerostomia). 2 Members 100% of the time
Prozac Fluoxetine Hydrochloride is an antidepressant 1 Member 100% of the time
Claritin Loratadine to treatallergies. Read Reviews 1 Member 100% of the time
Physical Therapy 1 Member
Melatonin 1 Member 100% of the time
Ambien Zolpidem insomnia 1 Member 100% of the time
Valium Diazepam (Stesolid, Seduxen, Bosaurin and Apozepam... 1 Member 100% of the time
Ramipril (Tritace or Altace) is (ACE) inhibitor (for high BP)... 1 Member
Carisoprodol skeletal muscle relaxant 1 Member 100% of the time
Hydrocortisone Synthetic cortisol, 1 Member 100% of the time
Running 1 Member 100% of the time
Metoprolol beta1 receptor blocker 1 Member 100% of the time
Carvedilol non-selective beta blocker 100% of the time
Crying 1 Member 100% of the time
Depakote (calproate semisodium or divalproex sodium) 1 Member
Baclofen Baclofen (Kemstro® and Lioresal®) 1 Member 100% of the time
Keppra Levetiracetam is an anticonvulsant medication 1 Member 100%
of the time
Allopurinol used to treat gout. 1 Member 100% of the time
IVIG Intravenous immunoglobulin (IVIG) is a blood product 1 Member 100% of the time
Lunesta Eszopiclone,(sleep aid) 1 Member 100% of the time
Sonata Zaleplon (Starnoc®) sleep aid 1 Member 100% of the time
Imitrex Sumatriptan (Imigran,Imigran Recovery ) is a triptan drug 1 Member 100% of the time
Chloroquine anti-malarial. 1 Member 100% of the time
Corticosteroids(see also prednisone) 1 Member 0% of the time
Humex 100% of the time
Aqua Therapy 1 Member 100% of the time
Eating Healthier Foods 1 Member 100% of the time
Lamictal (lamotrigine) anticonvulsant 1 Member 100% of the time
Orthopedic Brace 1 Member 100% of the time
Marijuana 1 Member 100% of the time
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