Tuesday, April 15, 2008

Lupus envy

i've had people say all sorts of insulting things to me regarding my illness. "i wish had 6 weeks ot just lay in the bed and read."
if your life is so F***ed up that you wish you could have a stroke so you could lie around, then you need
to change your life, not take it out on someone who's already down! And for what it's worth, reading was very difficult for me right after the stroke. My eyes were doing all kinda weird stuff.

Some of my friends are on disability and anyone who knows this says things like "why don't you get a job like the rest of us?"
Humans are lazy. they would all love to get a "free check" in the mail for "doing nothing" just ask them if they want to pay the price to get that "free" check- a lifetime of avoiding the sun, in and out of hospitals and doctor's offices, huge medical bills, disfiguring medicines, and always waiting for the axe to fall, the kidneys to fail, the next stroke, the next weird symptom, the next tiem you can't enjoy going out because you're too tiered.

i lost a lot of weight in 2002 when i was very very sick. i had no butt and was aactually uncomfortable.
someone had the nerve to say "i wish i'd lose my appetite" What i wish i'd said? "i'll trade you 2
strokes, hair loss, and kidney failure for a fat ass!!!!"

When I first got sick, I had two people from the church I was going to at the time call me at different times. One of them informed me I was sick because I had some hidden sin in my life (and was being punished). A kinder soul informed me that I was sick because I was doing god's work and the devil was attacking me. Hmm. cant' be both now can it?
They were baffled that someone like me, who showed up to church 3 times a week, could ahve something so awful happen to them. I realized later they were saying these awful things because they wanted to somehow blame me for my illness- if somehow it was my own fault, then they could believe it wouldn't happen to them. Same stuff they do when a girl gets raped and they say she was "asking for it" because she had on a short skirt. Once I realized it was fear, not meanness, driving these people to say awful things, I could forgive them.

Other folks from the church were all pitching in to help this woman who was bedridden (pregnant, doctor's orders) and bringing her dinner every night (she had a husband. Meanwhile I was debilitated and almost no one came around.
Later, after I got back on my feet (and moved away, and left the church, which I hope I'd have had the good sense to do even if I hadn't moved away), I finally called one of the main church guys and asked them why they refused to help me when I was sick, but helped others. He said "You're still upset about that?" Of course i was- no one had acknowledged the hurt or even considered apologizing or explaining. He said "Well we figured you were doing that 'wacky' medicine." So I said "you mean you didn't approve of the medical treatment I was getting so you decided not to help me." He says "Well i wouldn't put that way." And I said "I'm sure you wouldn't!" Because that would make you despicable!

find some real-life face to face friends who aren't crazymakers, takers, blamers, haters. seek them out. They may not all be in the church... but they are out there. i found some for the first time in my life after my 2nd flare. this whole thing has been
a lesson for me in caring for myself.

love yourself and others will follow suit (or get left behind!)

My disease is worse than your disease

People around you, when you have a chronic illness, don't understand when you can't go to social outings 3 times a week because it's too tiring, or other things you have to opt out of, even though you would love to do them. the weird thing is, those of us with lupus don't even fully know our own limitations, because i don't know about everyone else, but mine change all the time. so maybe what i could do last time someone saw me, I can't do this time.

I've heard horror stories about husbands who are just monstrous when their wives develop lupus. One of them actually went to the doctor and asked to be tested for lupus himself. Another is a "recovering" addict who needs knee surgery and takes all his wife's pain meds, leaving her with none to manage her lupus pain! my husband is awesome, and i feel so lucky to have found someone who really loves me despite this stupid illness. we're newlyweds, BTW, 9 months now, so you *can* find love after lupus. i didn't think it was possible.

the one thing he doesn't understand is how loud noises and bright lights and other forms of overstimulation are upsetting to me and always lead to a migraine. i have to keep telling him to talk quieter. it's like i have a perpetual hangover! no one can ever really "get it" no matter how wonderful a human being they may be, unless they have suffered something very very similar for a long enough time that they don't forget what it is like. in other cultures, BTW, you cannot be a healer unless you have suffered. very different from our medical system, which is seriously lacking in empathy and compassion. but i suppose that's another story. sort of. i mean they can be really invalidating too. i had a doctor tell me once "it could be worse. you could have cancer."

I snapped. I said well at least if you have cancer you either get better or die! (as opposed to draggin around feeling like crap and popping pills for decades!). He caught me at my wit's end- what can i say. But i don't regret it one iota. Not because I think lupus is worse than cancer or cancer is worse than lupus, but i just think it's *so* wrong to play the "who's got it worse?" game. I don't think he could have picked a worse thing to say. He's lucky I'm too weak to strangle anyone.

Something from the bible that has stuck with me: “it is not wise to compare amongst yourselves.” For example, lupus can be much worse or much less severe than breast cancer. some cancer patients just have a lumpectomy; others have it travel to their lymph system and die a painful death. Some lupus patients have mild fatigue and rashes while others, like me, suffer kidney failure, migraines, pleurisy, high blood pressure, anemia, congestive heart failure, even a stroke during a flare- it can still be a deadly disease, and most who die from lupus die of heart failure. And getting lupus doesn't exclude you from getting cancer, or vice versa. I've met folks who have had both.

So, in getting out of the pity party and competition frames of mind, I think that gratitude is definitely a very powerful choice. when I am feeling really stinky sorry for myself because I can't do the things I'd like to and no one understands and this stupid thing is probably never going to go away (notice I said "probably" even after 16 years of this, I still have hope!) I make a gratitude list. it’s a real pick-me-upper!

Hiding from the sun. Or not!

I found this article on sunscreens; many of them contain very hazardous chemicals that can harm us. A lot of
big name brands are the culprits, like Coppertone, Avon, Walgreen's. http://www.NaturalNews.com/021927.html

Also check out www.cosmeticsdatabase.com to get the ratings of all the various sunscreens out there. There are some healthy ones out there that pose little to no hazard to our well-being. and of course also some really toxic ones that make you wonder why they are allowed on the market!

I've been suspicious of commercial sunscreen for a while, and that is why i have been buying clothes with 50 SPF, to avoid slathering myself in chemicals if I'm going to be in the sun long enough to burn.

This goes counter to conventional thinking among lupus patient, but I think we need to get a little sun in order to be healthy. Not a lot- don't start sunbathing in the nude, or staying outside for hours and getting burnt just because I think we need a tad of sunshine in our lives. Just like a few minutes a day. I *have* to go out several times a day because we have a dog. Thanks to her I get a little dose of sunshine and fresh air (well as fresh as it gets in new jersey) and social interaction with the neighbors several times a day. Ever notice how a smiley face looks a lot like the sun?

I hear getting some sunshine helps the body create its own vitamin D, and calcium can’t be absorbed without that. A lot of lupus patients are told that sun exposure triggers lupus, so they cover themselves with toxic sunscreens, hide under an umbrella, wear long sleeves and floppy hats, or even adjust their schedule so they only go out at night. I think this is a bit extreme in most cases, unless you really do get a rash from the couple minutes of sun exposure while walking to the car.

But often we react this way because it's the *only* thing doctors give us any control over. The are ignorant about nutrition (almost no education about that in Med school, because it's *med*ical school, not *food*ical school, and these schools are funded by pharmaceutical companies who would much rather we depend on them for our well-being). They look down their noses at alternative medicine. The *only* bit of personal power we are given by these demi-gods is to stay out of the sun.

Now remember, I’m not a doctor, i just play one on myself.

Are they trying to get rid of us? Dangers of Cellcept

holy crap. I’ve been on cellcept for lupus since fall 06. I’m on a lupus chat group and now it seems like they’re giving *everyone* with lupus cellcept, even those with no major organ involvement, which I think is irresponsible. first of all, much as I hate the crap, prednisone works much faster and has a longer track record. Second of all, again, I do not like the drug but it works, Prednisone is like $4 a month and cellcept is $800. EIGHT HUNDRED. I know, because even though I had prescription coverage last year, i still paid $5000 out of pocket for drugs. About 95% of that was for cellcept.

I can only say the drug reps must be doing a helluva a job schmoozing up the doctors and convincing them to prescribe this expensive, unproven drug to every lupus patient (and there are millions of us, so what a racket!) Someone’s getting a new Beemer and a vacation in Rio. And someone else is getting an early grave (PML).


FDA issues a Communication About an Ongoing Safety Review of CellCept and Myfortic

ROCKVILLE, Md., April 10, 2008–FDA is investigating a potential association between the use of CellCept (mycophenolate mofetil) and Myfortic (mycophenolic acid), medicines used to prevent organ rejection, and the development of progressive multifocal leukoencephalopathy (PML), a life-threatening disease.

PML is a rare disorder that affects the central nervous system. When it occurs, it is usually in patients with immune systems suppressed by disease or medicines. It happens when the polyomavirus, also known as the JC virus, is activated. The JC virus is found in most adults but does not usually cause symptoms. Scientists do not know exactly how the JC virus is activated. Once activated, the JC virus attacks the cells that make myelin, the protective coating around nerve cells. Signs and symptoms of PML can include localized neurologic signs and symptoms including vision changes, loss of coordination, clumsiness, memory loss, difficulty speaking or understanding what others say, and weakness in the legs. Many patients who develop PML die. Patients who survive may have permanent disability due to irreversible nerve damage. More information on PML can be found at the National Institutes of Health website.

CellCept is approved to prevent heart, liver, and kidney transplant rejection and Myfortic is approved to prevent kidney transplant rejection. Mycophenolate mofetil, the drug ingredient in CellCept, is metabolized by the body to mycophenolic acid, the drug ingredient in Myfortic. Both CellCept and Myfortic are used with other drugs to suppress the immune system.

On November 8, 2007, Roche, the maker of CellCept, submitted an evaluation of its PML cases in patients who have received CellCept in addition to other immunosuppressive medicines. Roche also submitted recommendations to the FDA for including information about PML in the CellCept prescribing information. On March 14, 2008, Roche informed the FDA of the Dear Health Care Professional letter it issued in Europe on February 18, 2008.

Roche is aware of cases of PML in transplant recipients and patients with systemic lupus erythematosus (SLE), an autoimmune disorder that is sometimes treated with CellCept; however, CellCept and Myfortic are not approved for treating SLE or similar autoimmune disorders.

FDA is reviewing data submitted by Roche, including postmarketing reports it has received of PML in patients who took CellCept or Myfortic, and the proposed revisions to the CellCept prescribing information. FDA has asked Novartis, the maker of Myfortic, for data on PML cases and to revise the Myfortic prescribing information to include the same information about PML included in the CellCept prescribing information.

FDA anticipates it may take about 2 months to complete its review of the postmarketing reports and the proposed revised prescribing information for CellCept and Myfortic about PML. As soon as FDA completes the review, FDA will communicate the conclusions and recommendations to the public. Until further information is available, patients and healthcare professionals should be aware of the possibility of PML, such as localized neurologic signs and symptoms in the setting of a suppressed immune system, including during therapy with CellCept and Myfortic. Decreasing total immunosuppression may improve the outcome of patients who develop PML.

This communication is in keeping with FDA’s commitment to inform the public about its ongoing safety reviews of drugs.


Yes, it's killing people, but more importantly (the cha-ching):


....More than 500,000 patients worldwide have used CellCept, which brought in more than $2 billion Swiss francs ($1.99 billion U.S. dollars) in 2007, according to the company....

Sales of a multiple sclerosis drug, Biogen Idec Inc’s and Elan Corp Plc’s Tysabri, were suspended in 2005 amid three reports of PML.
The drug returned to the market in 2006 with limits, when the FDA decided patients were willing to accept the risk in light of the drug’s benefits.

The agency said it has also asked Novartis for related data and called on the drugmaker to update its prescribing information on Myfortic’s label. The drugmaker does not provide specific sales figures for Myfortic because it is not one of its top 20 products.
In a statement, Novartis said while it “is not aware of any instances of PML in patients using Myfortic, we will comply with the class label change requested by FDA.”

Shares of Novartis were off 3.9 percent, or $1.90, at $47.27 in afternoon trading on the New York Stock Exchange; earlier they closed down 2.8 percent in Switzerland. Shares of Roche closed down nearly 1 percent on the Swiss exchange. (Reporting by Susan Heavey; editing by Gerald E. McCormick and Dave Zimmerman)