Ok, well I can actually believe it. But the truth of the matter is, Benlysta does ABSOLUTELY NOTHING for over half of the people who try it. And for a drug that costs about $35,000 a year per person…I’d say that’s something to be mentioned…loudly.
Let’s also remind people that the drug has helped ZERO black patients. Zero. Let me try to iterate this as poignantly as possible. A drug meant to reduce symptoms of a disease that mostly affects black women…does not reduce symptoms for black women.
At this point, why are we even bothering???? Oh, right, because with great money comes great power, and great responsibility falls to the patients. That being said, if any of you are being recommended to Benlysta by your doctor, please give it another think-over. If you are black and considering Benlysta, stop. Just, stop.
(BTW, I will eventually get around to all the major necessary Vitamins/Minerals but I want to start with those most frequently tied to Lupus because, well, this blog is about Lupus)
To start, Vitamin D, unlike Magnesium, is found in very few foods and is mostly absorbed through the sun’s rays. Which is why many people with Lupus often find themselves at a disadvantage in maintaining healthy levels.
The function of Vitamin D that you are likely familiar with is that it is essential for Calcium absorption. So, when your D levels go low, so will your Calcium, which will lead to brittle bones.
But you might not know some of the other functions of Vitamin D.
Vitamin D has other roles in the body, including modulation of cell growth, neuromuscular and immune function, and reduction of inflammation [1,3,4]. Many genes encoding proteins that regulate cell proliferation, differentiation, and apoptosis are modulated in part by vitamin D . Many cells have vitamin D receptors, and some convert 25(OH)D to 1,25(OH)2D.
You see what I’ve highlighted for you, fellow sickies? That right there is why we need to pay attention to our bodies.
Now, like I mentioned earlier, Vitamin D is not found in many foods. If you find yourself in a deficiency, or are trying to avoid one, your best bet is taking 1 Tablespoon of Cod Liver Oil a day. I promise, there are brands available that will not taste like shit. Other than that, Salmon is the best source.
not really a question but...
thank you for your Magnesium and Lupus post this morning. I live for finding information on lupus and how to live with it. you're the best. <3
No problem! If you would like, here is a post containing a compilation of all my more lupus-related and informative posts in the past. It’s all organized so if there’s something you were looking to read about maybe it’s on there! Anyway, I’m not the best, you’re the best! Thanks for reading, and for writing, and for being gorgeous! <3
so, the doc called with my results. (gave my doctor permission to give me results over the phone because of my work schedule, I can’t make it to the office often… so the less pertinent stuff, he can just say over the phone)
anyways, he says my essentials were really low (calcium, magnesium,…
Wow that is such a great coincidence! If you need any advice on supplements and dieting and stuff message me, I’ve gotten that phone call a few times before. Otherwise, ill be posting more about different minerals and vitamins in the next few days! So glad you got some answers about what’s been bothering you!
Magnesium is the fourth most abundant mineral in our bodies and is incredibly essential to our health. Not many people get the recommended daily value of magnesium, but at the same time it takes quite a lot before we start showing signs of deficiency. And our bodies will work extra hard to keep the stuff on supply. But for people with Lupus or other Chronic Illness, you may be more at risk.
The health status of the digestive system and the kidneys significantly influence magnesium status.
People with Lupus, I’m lookin’ at you. Like I’ve mentioned early, our kidneys have a high risk of malfunction and so many deficiencies are more likely. Magnesium is one to look out for. You are more at risk of a deficiency if you have been vomiting, dehydrated or on antibiotics for an extended period of time. Also if you drink a lot of alcohol (which I hear is a common side effect of Lupus) you could increase your risk of deficiency.
Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures (sudden changes in behaviors caused by excessive electrical activity in the brain), personality changes, abnormal heart rhythms, and coronary spasms can occur [1,3-4]. Severe magnesium deficiency can result in low levels of calcium in the blood (hypocalcemia). Magnesium deficiency is also associated with low levels of potassium in the blood (hypokalemia) [1,19-20].
In addition, low magnesium is linked directly to high blood pressure, so if you are prone to that I would take extra care in your magnesium intake.
So if you feel like you don’t get enough magnesium in your diet, what should you be eating?? Well, magnesium is found in a pretty random assortment of foods, some leafy greens, some fish, some nuts, some dairy…Here’s a lovely chart from the lovely people at the National Institute of Health.
If you’re having trouble still though, many health food stores and vitamin shops will carry a magnesium supplement. I’d recommend one with calcium in it as well. And for those of you with Chronic Anxiety issues, there is available a Magnesium supplement powder that you can make into the worlds most relaxing tea. I kid you not.
I’m SO EXCITED someone finally put all of these in writing, together. Burn these into your brain, people. Apparently CNN.com asked exercise physiologists, trainers, and nutritionists about their most hated exercise myths, and their answers? Are ON POINT.
This amazing man took a pile of shit from the world for what he believed in. And what he believed in was a patients right to die with dignity. His medical license was revoked and he spent 8 years in jail for the 130 patients he assisted. As his practice was largely unheard of at this time, his methods were sometimes flawed. He wrote that each patient MUST meet with a psychiatrist to determine their mental stability.
I’ve worked in hospitals, I’ve seen the things that are much worse than death. Mothers who begin swatting away their children shouting paranoid accusations. Husbands telling their wives they don’t love them, spitting on them. People left without their pride because they can no longer control their bodily functions. All symptoms of the often long and torturous dying process for too many people.
We should be fighting for death with dignity, a government approved way of taking your own damn life (and death) into your own hands. And I don’t mean leaving a person untreated or off life support so that they wither away slowly and painfully. I mean extending the same courtesy that we do to our pets to people.
For his own death, Dr. Kevorkian was not allowed the option of assisted suicide, though he expressed a desire for it. He was not kept alive artificially, but he was denied the ability to die on his own terms and end his own suffering. His lawyer stated that, had he had the strength to leave the hospital, he would have taken matters into his own hands.
I think if we could actually get a more straightforward test for Lupus and cut diagnosis time by a large chunk, shit would be so much nicer. Most people don’t know what illness they have for years, and some people don’t even know what to test for or ignore their symptoms completely. This is a good step, should it work out.
I get that the article is trying to suggest that the fellow in question was under a lot of stress due to his illness and that may have contributed to his actions…well…I guess that sort of, kind of makes sense…It’s ok.
It’s not okay. Mentioning that he had Lupus was entirely irrelevant to the fact that this man had a lapse in sanity that caused him to murder. This is definitely the weirdest thing I have come across today. I really hope this is as far as I have to go with elaborating on this.
*Edit* Actually, I changed my mind. Maybe if people think Lupus causes murder they will push to find a cure faster. Quick, everyone start spreading this around! Lupus causes murder!
You know that feeling that you know the answer to something, or the name of something. It’s right on the tip of your tongue but you can’t seem to find the word and say it out loud? That’s how I feel about the cure for Lupus. Almost.
The article is definitely a good read, but I’d like to take it a step further. There are certain things that we know to be true. For instance, we know that people with chronic illness tend to see deficiencies pop up (for people with Lupus, it’s most often Vitamin D and B12, but could also be plenty others). We also know that deficiencies like this lead to an onset or worsening of symptoms. In addition, we also know that our bodies can be trained to do a great many things.
For instance, an athlete can “train” their heart to rest at a rate up to 30bpm lower than the average person their age. Someone with allergies can often times “train” their body to no longer react poorly to that substance. We can train our bodies to be immune to drugs, resistant to diseases (or even to antibiotics), and a myriad of other things.
In essence, my problem with the article is that it addresses the “what” but not the “why” or “how”. Yes, people with Lupus tend to fall into deficiencies in certain vitamins and minerals (B12, D, iron and magnesium are the main offenders). But there are a lot of issues regarding the how and why that happens. The answer, I believe, is a two part-er.
Firstly, we get B12 and D from the sun, and the vast majority of people with Lupus have a tendency to…avoid the sun for obvious reasons. So that’s a big hit right there. But the other reason is that Lupus affects the way we absorb nutrients into our bodies. First, by making it almost impossible for anything foreign to touch our systems without being slaughtered by the ‘roid-rage fury that controls our hyper active immune system. Second, Lupus has a real fondness for our kidneys. Lupus loves to fuck with the kidneys, and the kidneys are the magic tools for absorbing most of our nutrients.
But the remedy for this isn’t just about replacing what your body is missing, it is about training your body to do what it should be doing. Provided that you don’t eat McDonald’s three times daily, you probably ingest all of the nutrients that you’re supposed to be ingesting. If you’re not, then have a virtual smack in the head. Go eat some leafy greens. But let’s assume you eat fairly well, but you’re still experiencing deficiencies in basic necessary vitamins and minerals. A good sign that this is happening to you is that you will feel like a complete pile of shit. If you’re unsure, get your doctor to test your levels and show you how far away from normal they are.
Taking supplements usually equates to taking a lot more than the recommended daily value of most vitamins and minerals. This is good, as it will increase your chances of your body absorbing a normal amount (as opposed to before, when your body was being fed the normal amount, and absorbing much less, ya dig?) But you don’t want to keep on doing that forever because, well, that sucks. And if you take them until your levels normalize and then stop, you’ll just watch them drop again and you’ll find yourself in a cycle.
So the solution? And I promise you, it does work. Ween your body off the supplements after you’ve gotten your levels normalized. Week one, cut dose in half, then again week 3, etc.
It has been a little while since you answered my question, but I just wanted to reply to what you had to say to read some more of your imput.
Yes, I have aches. In almost all of my joints. My stomach seems to bother me a lot more than it should and I suffer from exhaustion, anxiety and depression. My feet are red all if the time and I have a bad memory. Maybe my anxiety gets the best of me, but I often wonder if I was misdiagnosed. |:
All those do sound like parts of a bigger whole. Maybe not Lupus, but something. Keep searching for the answer, but keep in mind that it absolutely could be anxiety-driven. =)