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Bone Fractures in lupus and other immune diseases

Short post departmemt. I just watched several videos on YouTube (where we all go for health informatIon!!) NOT 😐  The videos I found were more than interesting; both were of interviews with physicians at the meeting of the ACR (American College of Rheumatology) attended by some 15000 members.

One physician spoke of bone fractures and lupus. Were you aware that people with lupus are at an 8 times greater risk for sufferring from bone fractures? That the risk of lupus with kidney disease is more than 10 times? I sure wasn’t; the video:

Then, another physician sampled some 3000 individuals taking plaquenil (hydroxycholorquine). All lupies know of the connection between peripheral field blindness and Plaquenil and the need to have visual field studies every 6 months. Right? Read on! Of 3,000 lupus patients taking plaquenil, 0 suffered from visual field problems which lead to blindness. The blindness resulted was due to other conditions, possibly diabetes or macular degeneration.

 

 

 

 

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What inspiration!

We can’t be serious all the time; we need some relief every now and then. This video will help you take your mind off your troubles for a while. So sit back and relax and enjoy!

 

 

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Benlysta for subcutaneous (SC) injection?

Until now, Benlysta™ was only available for IV (intravenous infusion) in a clinic, hospital setting, or cancer setting. However, just several days ago, the FDA approved it for subcutaneous injection-a 200 mg weekly dose. So, after a patient has been trained by his/her doctor’s medical staff, the patient may self-inject Benlysta™ at home.

First developed as a monthly infusion in 2011, Benlysta™ is now a weekly subcutaneous  (beneath the fatty tissue of skin layers  but not as deep as the muscle) injection.  We’ll leave the ‘how to give a subcutaneous injection’ for another post.

People who don’t have lupus may think that giving shots for lupus is overkill, since lupus only gives you sore joints. Au contraire, lupus or another autoimmune disorder can affect the heart, lungs or intestines-any organ in the body a tremendous inconvenience, causing pain and suffering-these side effect can be fatal.

So, what is Benlysta™ ? It is a human monoclonal antibody, as opposed to Rituxan™ which is a murine (mouse) monclonal antibody-more about that later. Suffice it to say that because Rituxan™ is murine (from a mouse)  and Benlysta™ is from human monoclonal antib odies, there is less chance or a reaction to Benlysta™       .

It needs to be noted that Benlysta™ has not been approved for other forms of lupus: discoid, drug-induced or neonatal lupus. This formulation has only been approved for Systemic Lupus Erythematosus,

Benlysta™ hasn’t been used long-term to study it’s effectiveness in lupus nephritis  (when lupus has affected kidney function) and CNS lupus (when lupus affects the central nervous system).

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Cure for Lupus?

I thought that mentioning a lupus cure would grab your attention! Lupus can attack any organ or system of the human body (skin, liver, kidneys, spleen, nervous system, bones, intestine, to name a few); according to the Lupus Foundation of America, this disease afflicts @ 1.5 million Americans. Besides affecting friends and family, it has tremendous financial impact and can have a devastating affect on marriage and the family. As a chronic illness, lupus contributes to the high cost of healthcare. Based on that alone, you’d think doctors, scientists and researchers would find a cure for it. But one eludes them. Why?

Unfortunately, scientists don’t know the exact cause of lupus. If they knew the cause, then they could devote time to developing a cure. Some suspect a genetic cause, with the development of lupus needing a ‘trigger;’ but, they don’t know what the trigger is. There is thought that trauma, stress or diet can be that trigger. But, something causes the latent (passive) gene to become active and cause lupus.

Because scientists are left with a blank slate, as far as knowing the cause of lupus, they work  to develop treatments for lupus’ complications. Acetaminophen (Tylenol™) is often helpful for the pain of lupus. Because the pain can be due to inflammation, ibuprofen (Motrin™) and naproxen (Naprosyn™) are often recommended. Combination preparations like Vicoprofen™ (a combination of the analgesic Vicodin and the antinflammatory, ibuprofen) might be helpful.

A stronger medication in the doctor’s arsenal to treat the inflammation of lupus, is the steroid, prednisone. Prednisone, and other steroids, have powerful anti- inflammatory effects; but also undesirous side effects (hallucinations, elevating blood sugar or decreasing bone density) naming a few. But in a crisis, when inflammation can’t be controlled by any other means, treatment with steroids is indicated.

Because of the side effects, routine treatment with steroids should be instituted when all else has been tried and failed or when your doctor feels that the likelihood of something else working better than steroids is poor. For example, ibuprofen and an inhaler won’t work  in an acute asthma attack. So, the doctor has a choice to make. Administer steroids to decrease the massive inflammation so the patient can breathe and risk side effects and THEN adjust his medication regimen.

Other treatments are with disease-modifying anti-rheumatic agents (DMARD), the subject of a later discussion as well as a nutritional approach, The Autoimmune Bible and the Norton Protocol.™

Lately, the Lupus Research Institute (LRI), the SLE Lupus Foundation and the LFA (Lupus Foundation of America) are trying to make this the year when great strides are made towards finding a cure for lupus.

 

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Are we having fun yet?

What else could go wrong? Like I said in an earlier post, lupus began as a minor inconvenience to my life, but quickly progressed to creating some major problems. Joint pain, which I originally thought was arthritis, was osteonecrosis. The osteonecrosis could have been caused by many things, but lupus is a known contributing factor.

Then there came the blood clots; again they could have many causes. Mine were caused by Antiphospholipid Syndrome (APS) where the immune system creates antibodies to the DNA of cell walls. In that process, blood clots are formed.

This year, no clots, but because this particular clotting disorder and another one that can contribute to blood clot formation, I’m on life-time coumadin. Lovely! That means for every surgical procedure there’s the stopping of coumadin (risking a blood clot in and of itself), but substituting it with another medication that I inject, for a few days before surgery and after surgery. That’s one expensive proposition-and we’re not talking $40 insurance copay; I’m talking about the upwards of $400 because I’m now in the ‘Medicare Donut Hole’ and I pay the full price of the medication.

If that weren’t insult enough, I became increasingly short of breath and it was found that the cause was not an environmental allergen, not the elevation of Colorado, not many things, but a rare complication of lupus, called Shrinking Lung Syndrome. So, last May, I began taking a very powerful immune suppressant drug, intended to maximize control of lupus and in so doing, maximize control over this particular side effect. The problem is, this medication can take up to a year to work, (YES, YOU READ THAT RIGHT!) and even then, there’s no guarantee that it will be effective. Add to that the fact that it’s incredibly expensive and by decreasing the body’s immune response, it increases your risk for infections greatly.

Then, I think of the many times that mammograms have revealed calcifications, which on film show up so much resembling a tumor. So, there’ve been countess biopsies, all negative. That was a relief. Recently, a lump did not seem benign, in fact the surgeon was convinced it wasn’t. After a good five days of pins and needles, I received the call, “no sign of cancer” but a fat necrosis, caused by cutting off blood supply to fatty breast tissue. Is there any relationship between OSTEOnecrosis and FATnecrosis? I bet there is and I’m going to do the research to find out.

Then came Saturday. With heart rate normal but breathing heavily and feeling heart palpitations  and coughing, we went to the ER where they admitted me. Thank goodness they ruled out any cardiac or infectious cause; “so what was it?” That question remains. And that is just a slight glimpse into the problems caused by lupus in a few months. Read between the lines into what each problem caused and how involved it is and the IV sticks, the side effects of medications and tests-and Lordy; ARE WE HAVING FUN YET?

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Psychology and Depression

Let’s face it; having a chronic, possibly debilitating illness, carries with it a certain likelihood that you’ll experience depression; depression because you can no long do the things you used to do or maybe because you’re isolated. But, with so many antidepressants which one do you choose? You’ve probably been on ProzacÂŽ and ZoloftÂŽ or a few others. They work for a while, but then stop working? What next?

You might suggest a few to your doc, but don’t be surprised if your doc seems to dismiss your suggestions out of hand. The doc may balk, not because he/she doesn’t think that your suggestion is worthwhile and worth a try. Instead docs often balk at suggestions WE make because it is human nature to want to seem like they ‘came up’ with the idea  (not someone else, not you). So plant the seed, give it some time (to percolate) and politely bring it up at the next visit.

An antidepressant, after trying a lot of them, that has worked for me, is CelexaÂŽ (citalopram). I don’t know, if like some others, it works on nerve pain like a few others, but I’ve experienced decreased pain when I’m not depressed,; and I’ve experience MORE pain when I don’t tae my antidepressants. Tools like looking at the cup of life as HALF  FULL, instead of half EMPTY.

Depression can be so disabling a condition that many sufferers are unable to work; unfortunately, many suffer the stigma of being ‘lazy,’ but being depressed besides influencing your mood, can influence function and also ABILITY to function, so that one may be unable to ‘hold down’ a job.

If this is the case and you are unable to hold down a job and physicians feel that you are also unable to function, I would recommend contacting the Disability Digest by clicking the image below to talk to a disability advocate;

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