Tuesday, September 30, 2008

SLE: From the Clinic to New Treatments

Here's a layman's interpretation of an SLE presentation given at the 2008 European League Against Rheumatism (EULAR) Conference in Paris. The presentation concentrated on two major themes, one of which was B-cell-directed therapies in SLE. Here are just two of the drugs highlighted in the session:

1) Epratuzumab (drug name LymphoCide) - "shows promise for the treatment of SLE."

How it works:

Epratuzumab is a monoclonal antibody directed against CD22, a molecule present on the surface of B-cells, which are a type of White Blood Cell (WBC) responsible for protecting the body against infections. It binds to cells that express the CD22 molecule on their surface and results in cell death. It is now being tested in a number of worldwide trials in the treatment of lymphomas, leukemias and some immune diseases, such as lupus, or other diseases that involve abnormal B-cells.

LymphoCide is a humanized monoclonal antibody and is less likely to cause allergic reactions when compared with other monoclonal antibodies, including Rituximab that contains very small amounts of protein sequences from mice.

Test Results:

Patients in both epratuzumab groups had greater reductions in disease activity from weeks 4 through 48, compared with those receiving placebo. Overall efficacy was most consistent in the epratuzumab 360-mg/m2 group. Epratuzumab-treated patients used less corticosteroid than placebo-treated patients over 24 weeks. All very good news!

2) Mycophenolate (drug name Cellcept) - "results in improvement of lupus disease activity"

How it works:

Mycophenolatae belongs to a class of medications known as immunosuppressives. This medication was used originally in the management of patients with organ transplants, but is now recommended in the treatment of some autoimmune diseases. It targets an enzyme in the body called inosine monophosphate dehydrogenase that is important for the formation of DNA in cells. By interfering with DNA, the medication impairs function of immune system cells that become overactive in autoimmune diseases such as lupus. It's also been used to treat people with rheumatoid arthritis, vasculitis, inflammatory bowel disease such as Crohn's disease, and some other kidney or skin disorders.

Test Results:

In a 24-week phase 2 trial of 140 patients with active lupus nephritis, induction therapy with oral mycophenolate mofetil was superior to monthly intravenous cyclophosphamide. (CYC, used to treat various types of cancer, is a chemotherapy drug that works by slowing or stopping cell growth.) All patients received oral prednisone at doses of up to 60 mg/ day.

104 of 185 patients responded to MMF, compared to 98 of 185 patients who responded to intravenous CYC. Some patients also achieved remission of lupus nephritis disease activity: 54 of 182 patients treated with MMF, compared to 45 of 181 patients treated with intravenous CYC. Both drugs resulted in improvement of lupus disease activity, and future results of this trial should be most interesting.


Clinical experience with B-cell-directed therapies in SLE continues to be encouraging and suggests that subsets of patients with SLE may respond to this treatment approach. However, clinical trials reported to date have been either of inadequate design (open-label, uncontrolled, or with an inadequate primary efficacy endpoint) or flawed by interruptions in medication supply to determine therapeutic efficacy adequately. Additional randomized, double-blind, placebo-controlled clinical trials of B-cell-directed therapies are needed to confirm the clinical utility of this approach to treating SLE.

Medscape 9/25/08, Jonathan Kay, MD, FACP, FACR Disclosures

Monday, September 29, 2008

New Poll - How old were you?

While statistics say that Lupus most often strikes young women between the ages of 15 and 44 (up to 80%), let's find out if the readers of Despite Lupus support the numbers. Check out the newest poll at the right - asking how old you were when you were diagnosed with Lupus. Count my vote in the second grouping, since I was diagnosed at the age of 26.

Some other interesting statistics, taken from the LFA website:

*Most victims of lupus are women – 90 percent

*While people of all races and ethnicities can develop lupus, the disease disproportionately affects African American, Asian, Latina, and Native American women.

*Approximately 1.5-million Americans have a form of lupus.

*In approximately 10% of all lupus cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.

*20% of people with lupus will have a parent or sibling who already has lupus or may develop lupus.

*About 5% of the children born to individuals with lupus will develop the illness.

*Several studies reveal that the annual average cost to provide medical treatment for a person with lupus ranges between $6,000 and $10,000. For some people with lupus, however, medical costs may exceed several thousand dollars every month.

*Two of three lupus patients reported a complete or partial loss of their income because they are unable to work due to complications of lupus.

*One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.

Thanks for participating in the poll!

Friday, September 26, 2008

Baby Bun's Motto

You're probably familiar with the ABC's of sales...Always Be Closing. Well, Baby Bun has a mantra of his/her own...Always Be Kicking. Seriously, Bun has to be one of the more active knuckleheads around these parts. At least that's what MY parts say!

Here is the most recent 3D sonogram picture, where Bun is proudly showing off one very chubby cheek. The baby is weighing in at 6 lbs, 6 oz...give or take a couple of ounces. I have one week and three days left to go - there's no turning back now!

At my most recent appointment, I asked the doctor about neonatal Lupus, in particular about the temporary rash that some babies get who are born to mothers with Lupus. An official description follows:

The neonatal rash can take many forms, but is usually scattered over the body, not necessarily on the face. It shows up a few days or weeks after birth, particularly after sun exposure, and usually disappears after a few more weeks, leaving no scar. The rash looks like many other rashes that babies get. It can be identified definitively only by biopsy, but just doing a blood test and waiting for the rash to disappear is all that is needed.

Thankfully, my doctor says it is very rare, and doesn't believe Bun is currently at risk. We made it through all of the congenital heart block checks (which is another off-shoot of neonatal Lupus) with flying colors, so I'm confident that Bun will be in the clear. But just in case, here are some other reassuring facts about neonatal Lupus:

*Neonatal lupus is very different from systemic lupus and it does not develop into SLE
*In most cases, neonatal lupus is not serious and does not need to be treated.
*In most cases, neonatal lupus disappears spontaneously in a few weeks, leaving no after-effects.

More on neonatal lupus can be found here in a newsletter article written by Michael D. Lockshin, M.D., Special Assistant to the Director, Clinical Center, NIH, Bethesda, Maryland. 

Thursday, September 25, 2008

Bone Up on DEXA!

In a previous post about prednisone, I mentioned that I have Bone Density Scans (commonly called DEXA) done every two years in order to monitor, you guessed it, my bone density. While there are drugs (like Actonel and Fosamax) that can actually help to rebuild your bones, a disease like Lupus, in combination with drugs like prednisone that literally eat away at the bones, requires that you not overlook the importance of monitoring your bone density. Here's a little bit more about DEXA, which is an x-ray usually performed at your doctor's office.

To start with, it is a non-invasive and painless procedure, and even better, it takes a mere minutes to perform. It is important that you wear loose fitting clothing, and you'll need to remove any garments that have notions made with metal (including an underwire), just as in any other x-ray. As I was gathering information for this post, it was also recommended that you not take calcium supplements for 24 hours prior to the scan, but be sure to check with your doctor on this before modifying any vitamin or medication regimen.

While there are two types of machines, my familiarity is with the Central DEXA device, which measures bone density in the hip and spine. These devices have a large, flat table and an "arm" suspended overhead. For my scans, I've always been asked to lie down on a padded table, where the x-ray generator is located below and an imaging device, or detector, is positioned above. The DEXA machine then sends a thin, invisible beam of low-dose x-rays with two distinct energy peaks through the bones being examined. One peak is absorbed mainly by soft tissue and the other by bone. The soft tissue amount can be subtracted from the total and what remains is my bone mineral density.

Throughout the procedure, my legs are supported on a padded box to flatten the pelvis and lower (lumbar) spine. To assess the hip, my foot is placed in a brace that rotates the hip inward slightly. In both cases, the detector is slowly passed over the area, generating images on a computer monitor.

Just as any other x-ray, you have to hold very still and may be asked to keep from breathing for a few seconds while the x-ray picture is taken to reduce the possibility of a blurred image. The overall procedure usually takes about 10-20 minutes, depending on the equipment used and the parts of the body being examined.

As far as procedures go, it's one of my favorites. It's quick, painless, and I don't need a prescription to go waste a few hours waiting in a x-ray facility. The results of the x-ray are generated immediately, and my doctor usually follows up with me within a few days on how my bone density is looking. If need be, we increase my calcium intake via supplements or food. As mentioned in my earlier post, for a few years, my bone density diminished drastically, due to the high doses of prednisone and disease activity, and even despite the fact that I was on the highest dose of Fosamax. But having stopped prednisone and increasing my calcium intake significantly, my bone density has actually improved. Score one for the patient!

Here's a little more about why a bone density test is done, taken from the Radiology Info website:

DEXA bone densitometry is most often used to diagnose osteoporosis, a condition that often affects women after menopause but may also be found in men. Osteoporosis involves a gradual loss of calcium, causing the bones to become thinner, more fragile and more likely to break.

DEXA is also effective in tracking the effects of treatment for osteoporosis and other conditions that cause bone loss.The DEXA test can also assess an individual’s risk for developing fractures.

Bone density testing is strongly recommended if you:

  • are a post-menopausal woman and not taking estrogen.
  • have a personal or maternal history of hip fracture or smoking.
  • are a post-menopausal woman who is tall (over 5 feet 7 inches) or thin (less than 125 pounds).
  • are a man with clinical conditions associated with bone loss.
  • use medications that are known to cause bone loss, including corticosteroids such as Prednisone, various anti-seizure medications such as Dilantin and certain barbiturates, or high-dose thyroid replacement drugs.
  • have type 1 (formerly called juvenile or insulin-dependent) diabetes, liver disease, kidney disease or a family history of osteoporosis.
  • have high bone turnover, which shows up in the form of excessive collagen in urine samples.
  • have a thyroid condition, such as hyperthyroidism.
  • have a parathyroid condition, such as hyperparathyroidism.
  • have experienced a fracture after only mild trauma.
  • have had x-ray evidence of vertebral fracture or other signs of osteoporosis.

Tuesday, September 23, 2008

Getting in our ZZZ's while we still can

Henry and I aren't wasting one second of the quiet time we have before Bun arrives. While I only slept for my usual hour and a half, Mr. Lazybones was still in this position 4 hours later...when Johnny, Darwin and I were retiring for the evening. Don't worry - we ushered Big Hen outside so that he could refresh and relieve himself before turning in for the night. Life is tough for this guy, huh?

Johnny and I had grand plans of relegating the pugs to the family room at night (because they currently sleep with us)...thinking that Bun's nightly routine would cause the boys to stir, thus keeping us up unnecessarily. We have yet to pull the trigger, and truth is, I don't think we're going to kick them out of our bed anytime soon. While we're strongly opposed to sleeping babies in our bed, furry babies with paws (i.e. puglets) are a different story. Per my example above, Henry doesn't let much come in the way of him and his sleep, and Darwin is a pro at falling asleep the instant his little head hits the bed. Although we did install room-darkening shades so that Henry would no longer be disturbed by the flash of headlights from the lone cars that pass our street in the middle of the night, I believe that he's going to be able to filter out the whimper of little Baby Bun. Time will tell...I'll keep you posted.

Matilda the Pug - All grown up!

Several weeks ago, I blogged about two new pug puppies in our neighborhood, Matilda and Roscoe. Unfortunately, Roscoe didn't make it, but Matilda, puglet extraordinaire, is thriving and adorable. She came over for a visit last night - and the boys were enthralled! Here are a few pictures that are sure to make your day. Enjoy!

Monday, September 22, 2008

"Dishing" Ain't So Easy!

I made a mistake!

About a month ago, I posted a blog entry called "Eating the Easy Way", suggesting that when you're feeling down and out, you should make life easy on yourself and sign up for a prepared meal service like Let's Dish. I had heard through the grapevine that it was a great way for people with very little time or energy to make good, wholesome, home-cooked meals in a flash, but I had never tried it myself. This weekend, I did, and I learned a few things that are worth sharing.

First - the concept itself is a great one. The particular company that I tried out, Let's Dish, really has their act together. The place was clean, the staff was super friendly, and from start to finish (we registered for the eight meal-making session online a week in advance), the process was smooth and easy.

Second - the ingredients were fresh and the meals we chose looked just as good in the making as they did on the website. I'm looking forward to pulling the assembled, yet uncooked meals out of the freezer once Bun arrives and popping them in the oven. I'll still have to put forth the effort to prepare and cook them, but at least dinner is half-way finished.

Three, and here's what I didn't know before - the actual meal assembly is a much longer, more labor-intensive process than I thought it would be. In fact, it was too much for this pregnant Lupite. While there is a snack bar where you can sit and relax for a few minutes to regain your momentum (and the staff encourages you to do this), the fact of the matter is that participating in the in-store session requires that you stand at the food prep counters, mixing, measuring, and combining the ingredients for the entire 2-hour period of time.

Now that I know what's involved, I need to amend my previous recommendations and say that if you're achy, swollen, and fatigued - definitely skip the in-store prep session. It requires too much effort, and I think it would leave you feeling too weak and exhausted to truly benefit from the service. Although I can't speak to the ease of cooking and serving one of the meals from the freezer, I think that the other assembly options (Dish 'n' Dash and Dish Delivery) are still viable options, particularly if you stick to the dishes that are truly heat and serve. The effort really is minimal and you truly will be lightening your load.

Dish 'n' Dash requires that you simply swing by the store front, pick up a couple of professionally-assembled meals that you've pre-ordered online, and store them in the freezer until you're ready to use them. Of course, the Dish Delivery option just cuts out the need to swing by the store front yourself, and sometimes, one less errand is just the thing you need when you're not feeling well.

So - I learned my lesson on this one, and you can be sure that I won't be making any more recommendations without first trying them out myself. My apologies if you rushed out and dished after my previous blog post - hopefully I've caught you in time!

Friday, September 19, 2008

Pregnancy Sleep - an Oxymoron if ever there was one!

So I have officially entered into the world of pregnant insomnia. I'm not really going to complain, because a) I have the time and flexibility to make up for the lack of sleep during the day, and b) my insomnia is limited to about an hour when I first go to bed and then again for an hour around 5am, which is a lot better than some of my girlfriends have it. I'm also learning to adjust to getting less sleep at night - my nights of 10 solid hours have fallen by the way side, but that's okay. I've just learned to add in more naps during the day, which will hopefully prove to be a good habit once Bun arrives. Yesterday, for example, I took a 20 minute snooze around 1pm, and then my normal 1 1/2 hour nap around 5pm. Come 6:30pm, I was ready to rock and roll (emphasis being on the word "roll".)

I say let the sleeplessnes of Bundom begin...I'm as ready as I'll ever be.

In other news, my rheumatologist's appointment went well yesterday, and he (Dr. R.) is confident that all will go well come October 6th. In his opinion, the best indicator for postpartum wellness is a healthy 9-month pregnancy...which I have had. He feels that the stress on the body (as it relates to Lupus issues) over the entire 40 weeks (a little under 38 for me) is far greater than the stress of the actual day (or two - eek!) of labor and delivery. He also thinks that given the fact that I had no disease activity for more than a year (almost two) BEFORE becoming pregnant, I should be in the clear.

Throughout my pregnancy, I have been anemic and have had traces of protein in my urine (indicating that my kidneys aren't filtering or functioning at 100%), but neither symptom is cause for great concern. These two issues have frequently presented themselves ever since I was diagnosed, even during my last couple years of symptom reprieve. My O.B. ran some blood tests last week to make sure things weren't out of whack, and Dr. R did the same again this week. They're not overly concerned at this point, so nor am I!

If I do happen to flare post-delivery, we have a plan to increase my dosage of Plaquenil to 600 mg every day, which I was on prior to pregnancy. (I went down to 600mg/400mg every other day for the first few months of pregnancy, and then later to 400mg daily, which is what I'm on now.) And if that's not enough, we can always pull out the old steroid stand-by, your favorite and mine, prednisone. Because it's been over a year since I've had to take prednisone, and almost two years since I've been on anything higher than a maintenance dose, Dr. R agrees with my O.B. that steroids are not necessary before, during, or immediately following delivery, as they sometimes are with Lupus patients. Of course, those little magic pills might be necessary in the long run, so I won't get too cocky about not needing them. (See my previous Prednisone post for details on why bad-mouthing the drug comes easily.)

Here's to the final 2 weeks and 2 days before Bun arrives!

Thursday, September 18, 2008

Vacation Temptation

Johnny and I have always taken a lot of vacation time. When I was working, I never had any unused time at the end of the year, and I was often working to make up for the time off I’d already taken. Traveling the world just seemed to be something that we both enjoyed, and after this 9-month hiatus, we’re looking forward to getting back to it. (I know, I know – we still have a couple more months before Baby Bun will be ready to travel…but better to think about our trips for ’09 now rather than wait until we’re too tired to plan them!)

In contemplating what vacations to take, I’m reminded of how important it is not to let my efforts to live well fall by the wayside. I know I’ve blogged about chronically jetsetting before, but I just had my last hurrah sans bambino this past weekend, and I was reminded how the simplest things can throw off my routine. While it’s tempting to stay up late, engage in a lot of activities, eat indulgent food, and skimp on rest and, when I’m not pregnant, exercise…I have to remember that I still have Lupus, regardless of what state or country I’m in.

That’s not to say that I don’t or shouldn’t indulge a little. I just need to find a balance so that I don’t need a vacation to recover from my vacation. Staying up late ONE night is fine…three in a row is where I get into trouble. Same with eating my way through a vacation. My trouble isn’t in eating too much food – it’s eating the right kinds of foods. When I’m traveling, I tend to grab a danish or a muffin around mid-morning rather than a piece of fruit, which I would have at home. One time is fine, but doing it several mornings in a row takes its toll. And exercise is another biggee for me. I’m a routine person – always have been, always will be – so why shouldn’t I take 20 or 30 minutes to exercise while on vacation (and do so in a much prettier setting than I would at home?) Just because I’m on vacation doesn’t mean my body doesn’t need to be invigorated the way it does at home. Sure I can skip a day or two, but it’s in my best interest to get in some light exercise just to keep my joints supple. (Note that my joints are very unsupple right now due to this big belly of mine. Once Bun arrives, I’m looking forward to getting my flexibility back!)

So come my next vacation – I’ll be ready. I imagine traveling with a wee one will provide even more challenges, but that’s why it will be more important to take care of myself while on the road. Now I’ll have another little person to watch out for!

And if you’re thinking that our next trip will be to Disney World, think again. Bun won’t have caused us to change strides that quickly!

Monday, September 15, 2008

Disease Activity Poll - the Results

Thanks again for participating in the poll! Here are the results:

29% of you are doing fantastic, which is great to hear.

35% of you are doing pretty well, only reporting mild disease activity.

11% of you aren't doing that great, and currently suffer from frequent symptoms that continue to worsen.

The most unfortunate news - 29% of you reported feeling downright crummy because you are currently in a flare.

Hopefully, the fact that almost 30% of us out there with Lupus are doing great (with another 30% who are doing well) gives those who aren't feeling so hot hope for improvement. The disease can and will get better - just make sure you're taking the steps you can to keep the disease activity in check.

For a quick reminder on how to do this, check out the Lupus Lesson and the Lighten Your Load Ticker at the side of my blog.

And remember the common environmental triggers of Lupus. While cutting down on any of the following isn't a guarantee for disease inactivity: Stress, Fatigue, Overexertion, and Sun Exposure, it sure might help!

Fall can be a tough time to ratchet back your activity level. After all, summer vacation is over and you're ready to get back to work and start "doing". But remind yourself that living well isn't a seasonal thing. It's a lifelong decision that takes a little effort every single day. You're worth it, so keep at it!

Friday, September 12, 2008

A Little more about Fibromyalgia

A girlfriend of mine recently mentioned that she's in a Lupus flare, accompanied by a crummy case of fibromyalgia. I know I've mentioned the syndrome before, and Medscape (the medical website I subscribe to) just featured a great presentation on the subject. Here are a few snippets from the slide presentation titled Recognizing Fibromyalgia Syndrome as a True Disease Entity, given by Dr. Philip Mease, MD:
(Click here to view the entire presentation)

Thursday, September 11, 2008

So much for a Routine Check-Up!

Just when I thought I had these weekly check-ups figured out, things get crazy!

For the past three weeks, the doctors have added a 30-minute non stress test (aka NST or fetal heart monitoring session) to my routine sonogram appointment. All has gone well, except for yesterday, when throughout the entire test, they noted that I was consistently contracting!! I didn't feel anything abnormal, just the typical tummy hardening and shape changing, but in discussing what they were seeing and what I've been feeling, I guess they are one in the same.

Because they were so regular, there was talk of medication (to slow down the contractions) or other crazy things, but in the end, I'm to continue without taking any extra measures. It's fairly typical to have contractions at this stage of the game (normally called Braxton Hicks), but I guess for that 30 minute period, they were a little too frequent and consistent to ignore!

NOTE: The following detailed paragraph may be too graphic for the casual Despite Lupus reader...read at your own risk!

To determine that no action was needed at present, the nurse practitioner checked my cervix, and because I'm not dilated at all and the baby's head is still floating (as opposed to pressing down on the cervix, shortening it, or altering it in any way), I'm going to continue on as planned.

Resume All Readership:

When I saw the doctor following the NST and the physical exam, he didn't seem concerned at all. In fact, he chalked it up to irritability. But the nurses were in quite a tizzy over the whole thing, which is just fine, because it definitely got my attention. Bottom line: all is well and Bun is in no danger. I just have to be a little more cognizant of what I'm feeling and how often.

As the nurses alerted us to what was happening, Johnny and I both had visions of bed rest, admittance, or an early bird delivery. We've told Bun to just hold tight in there...but I guess we need to be a little more specific from now on.

In other news, Bun is doing well - under no stress, looks good on the sonogram, and has a perfectly functioning heart. Although the original hospital admittance date was Friday the 3rd (to deliver the 4th), the doctor decided that since the 4th is a Saturday, we'll be moving the date to Monday. So now I'm scheduled to be admitted on Sunday the 5th, with plans to deliver the 6th. Bun gets to cook a few more days, which I know is good. Guess every day helps those little lungs!

It's also confirmed that I'll be stopping my daily Lovenox injections on the 17th of September...and I won't be starting any Heparin shots as originally planned. Things are going so well that I don't need to take any extra precautions. What a relief! 7 more pinpricks and I'm finished! Yipppee!!

A few days ago you were able to see Bun's accommodations on the inside. Now have a look at Bun's crib from the outside. And although we're not finding out before delivery - I have to ask...based upon the pictures, what do you think I'm having? A girl or a boy? Everyone says you can tell from the location and shape of the belly, but I'm not too sure. I think it's definitely up for grabs! Be sure to cast your vote in the poll at the side of the blog. It's not brain surgery - just take a guess!

Wednesday, September 10, 2008

Eye problems and Lupus? Who knew!

A friend of mine had some eye problems a few years back that were never really explained. Since then, she's been diagnosed with Lupus, and she's now thinking the two are related. I never knew there was a link, but I then I saw this case study on Medscape featured back in May. The feature gets a little technical, but it's nonetheless interesting.

Background: A 38-year-old woman with systemic lupus erythematosus presented with headaches and bilateral hearing loss. Brain MRI was initially suggestive of small-vessel disease developing in the context of neuropsychiatric systemic lupus erythematosus. Several months later, the patient developed optic neuritis, followed by recurrent attacks of myelitis.

Investigations: MRI of the spine revealed multifocal regions of myelitis affecting the cervical spine. Serological evaluation (blood work) revealed the presence of neuromyelitis optica-IgG antibodies. MRI of the brain was nondiagnostic for multiple sclerosis.

Diagnosis: Recurrent myelitis and optic neuritis, occurring in the context of neuromyelitisoptica (also known as Devic's syndrome). Note that optic neuritis and myelitis can occur as manifestations of "idiopathic" demyelinating syndrome. (UGH! See my previous post if there's any question how much I hate that word!)

Management: The patient had recurrent attacks of myelitis despite treatment with pulse cyclophosphamide. After initiation of rituximab, the patient experienced symptomatic improvement and had no further attacks of opticospinal disease.

Neuropsychiatric Systemic Lupus Erythematosus

The patient initially complained of headache and bilateral hearing loss. Bilateral hearing loss is never a manifestation of a primary demyelinating syndrome, but can be seen in small-vessel vasculitis (i.e. Wegener's granulomatosis). Early clinical and radiographic findings suggest small-vessel ischemia caused by active neuropsychiatric SLE (NPSLE).

Although ON and myelitis in patients with SLE are usually considered manifestations of active NPSLE, a clinical history and neurological examination offers insight into whether there is a second auto immune disease present.

The patient's loss of visual acuity indicates dysfunction of the optic nerve. In patients with SLE, mechanisms that cause clinical and radiographic patterns of white-matter disease—owing to a small-vessel microangiopathy— likely contribute to a similar "ischemic" optic neuropathy. [In this case], the patient's subacute loss of visual acuity, significant retro-orbital pain and normal fundoscopic findings are more consistent with ON than with the ischemic optic neuropathy seen in SLE. Alternative demyelinating syndromes, therefore, need to be considered.

Treatment and Management

The B-cell arm of the immune system constitutes an important therapeutic target. An open-label study of eight patients with severe and relapsing NMO treated with rituximab (Rituxan) demonstrated improvements in the frequency and severity of relapses.[20] Recognition of NMO as a unique diagnostic entity might prompt earlier use of B-cell-depleting agents, especially during the therapeutic window of earlier attacks.


In summary, the case presents a patient with SLE and a coincidental but distinct syndrome of NMO. Early use of plasmapheresis (kind of like a blood transfusion but with plasma) and B-cell-depleting agents (like Rituxan) can potentially mitigate the ominous prognostic features of functional blindness and wheelchair-dependence that occur in untreated NMO patients. In patients with SLE and ON or myelitis, identification of clinical or prognostic features consistent with NMO should lead to testing for the presence of the NMO-IgG autoantibody.

Tuesday, September 9, 2008

Lightening Your Load while Getting a Grip

Time to highlight another suggestion on the Lightening Your Load ticker. Ever thought about using easy-to-grip kitchen utensils instead of those harsh, metallic, thin daggers you're currently using? You won't believe the difference they can make when your hands are hurting. 

OXO Good Grips is a great brand to check out - they have eating utensils, kitchen gadgets and a whole lot more. Each piece features a soft, rubber-like material that is comfortable to hold (even in the most arthritic hand) and easy to use. The larger grip allows you to loosely grasp the utensils, rather than having to contend with the painfully small, rigid stem of most kitchen gadgets. When you're flaring, every little bit helps! 

Check out the broad selection of kitchen utensils and garden tools at Active Forever or at Great Cookware. You can also search locally for the best deal on these utensils. Most Target and Wal-Mart stores carry several versions of these things. Here's to making your next PB&J pain-free!

Monday, September 8, 2008

Wellsphere Re-Released. Check it out!

Remember I mentioned that I was asked to be a health blogger on Wellsphere, a new health website that had recently launched? They've revamped a bit and just launched their new, improved site - and I think you'll love it. Check it out here or at www.wellsphere.com when you have the chance.

And while you're online, you should check out Daily Strength at www.dailystrength.org (or just click here). It's a comprehensive network of online support groups, connecting you with other Lupus patients around the world.

For those interested, here's the skinny on what Wellsphere is all about:

Wellsphere, the fastest-growing top 10 health website has just launched its groundbreaking solution for finding expert health knowledge and personal support. The new Wellsphere introduces “WellPages,” comprehensive, personalized webpages that connect people with the best health knowledge from experts, doctors, patients and healthy living professionals – providing immediate answers to their specific health questions.

WellPages offer a comprehensive perspective on millions of health topics by drawing from hundreds of thousands of articles written by Wellsphere’s network of 1,200 rigorously selected health writers and experts who dedicate their writing to helping others improve their lives. Many of the leading medical minds from Stanford, Harvard, Johns Hopkins, Yale and other top Medical Institutions are currently sharing their knowledge alongside patients who bravely share their journeys through stories, pictures, videos, and personal discussions. Patients can also connect in any of Wellsphere’s more than 100 new health communities to share advice and support one another.


Friday, September 5, 2008

Bun's first official film strip

Oh, the picture obsession has begun. Just take a look at Bun now - 4 lbs, 10 oz at 33 weeks.

We are now into weekly appointments, and have started Non Stress Test Fetal monitoring. My tummy gets strapped to a couple of monitors and then we listen to Bun's heart beat away for 20-45 minutes. The goal is to establish a baseline heart rate, and then for the baby to experience 2 separate rate increases each measuring at least 10 beats higher than the baseline. The first time I got all hooked up, Bun had the hiccups...so we had to wait for those to subside. (If you've never heard a baby in the womb with hiccups - it's something else!)

Weekly sonograms will continue through the end of the pregnancy, along with a couple more checks on the PR interval (checking for heart block.) The PR checks should end soon, but for now I don't mind. Who wouldn't want to spend a few extra minutes staring at Bun each week!

We're headed to our hospital tour this morning. I'll be sure to expound on everything I learn!

Thursday, September 4, 2008

Feeling Good?

Thought it was time to throw up another poll! Everyone can participate in this one - Luppie or not. (Although we're all a little loopy, now, aren't we?)

Check it out at the side of my blog - and let me know how you (as a Lupite) are feeling this week. If you don't have Lupus yourself but know someone who does, update us on how they're doing.

If you know more than one person with Lupus, feel free to vote a second time. The goal? To find out how the disease is treating the Despite Lupus readers (or the Luppie friends, family or co-workers of the D.L. readers) - Good, Bad, or Fantastic. Here's hoping the reports are good!

Look forward to hearing from you and thanks for participating.

Wednesday, September 3, 2008

Clinical Trials: A Hot Topic

At my last Lupus Support group meeting, one of the members mentioned that his doctor suggested he participate in a clinical trial. While we all agreed the trials are important, we were each a little reluctant to dive right in and participate. I wish I felt more confident in taking part, because as we all know, that's the only way proven treatments make their way to patients like you and me. I try to remind myself that someone stepped up to the plate before me, paving the way for the drugs that are currently keeping me so well. I guess I'm just a wimp - as the unknown outcome of a trial seems like such a deterrent!

In the summer issue of Lupus Now, there was a great article on the subject, and there was also a mention in the most current newsletter from the Lupus Foundation, Greater Washington area. Here's the gist of the newsletter article - perhaps once Baby Bun arrives and things settle back down, I'll have the guts to look into the subject further.

LFA Launches Center for Clinical Trials Education

The Lupus Foundation of America (LFA) has announced the launch of the Center for Clinical Trials Education (CCTE), a resource for people interested in learning about and joining lupus clinical trials.

The initial programs of the CCTE include a Website (www.lupus.org/clinicaltrials) and a series of grassroots community education programs on clinical research offered through the LFA's network of 38 chapters around the country.

The CCTE Website (www.lupus.org/clinicaltrials ) has extensive information about clinical trials and clinical trial participation. It includes information on the rights and responsibilities of study volunteers and a list of important questions for someone with lupus to consider before joining a study. A trial-locating service on the Website has links to existing lupus clinical trials. Visitors can find details about individual studies, whether they are seeking volunteers, and the medical centers where the trial is being conducted. Future enhancements to the Website include a registry where individuals with lupus can volunteer

Anyone out there have any good experiences to share on the subject of clinical trials? Do tell!

Monday, September 1, 2008

Tsk, Tsk, Tsk!

When I began downshifting my life in an effort to get well, there were two things that drove me crazy about dealing with other people.

First, I wish they would have realized how much I struggled to make each and every little decision to start living well. Working an hour less, taking a nap in the afternoon, or skipping a social engagement may have seemed like a no-brainer, but those decisions didn't come so easily to me. In fact, every effort seemed like a major sacrifice - and I didn't appreciate or enjoy having to make any of them. No one likes to change their way of life, and I resented the fact that I had to reconfigure parts of mine to accommodate for Lupus. I knew deep down that those little decisions would, in the end, help temper my disease activity, so I forced myself to make them. But I really struggled with the fact that people around me couldn't or wouldn't acknowledge the effort I was making.

Two, I wish those around me would have realized that their suggestions to "quit working, take it easy, or not overdo" often felt more like criticism than encouragement. Their admonishments felt like a direct attack on my ability to manage my own life, and I was disheartened rather than empowered by their comments. In his book, And Never Stop Dancing, Gordon Livingston says,
"To assume that people have within themselves the capacity to decide what is best for them is a vote of confidence." That is exactly what people were missing, and it drove me crazy.

And yet - as strongly as I felt about these two aspects of my interrelations with others, I have failed to heed my own advice.

This past weekend, my mom came to visit. While we had a fabulous time preparing the nursery for Baby Bun (making curtains, finding a changing table, preparing the crib), I wasn't able to hold my tongue about the subsequent changes in lifestyle she's had to make due to a triple by-pass surgery she had a few years back. She had another scare this past spring, and as badly as I want her to make good, healthy choices (regarding diet, exercise, sleep, etc), I need to remember just how hard it is to make those big lifestyle changes. It may seem easy to me - after all, why wouldn't she do that which is needed in order to be around as long as possible? But change is never easy - I know that first-hand.

On top of that, it can't make her feel any better when I constantly make suggestions about how she should change her life. What she needs is to hear how much I support her, how much I believe in her ability to make those good decisions, and how great it is that she's made the strides she has.

When I was struggling, that's what I needed and wanted more than anything. It's only fair that I try and do the same for her.

So there you go - slap me on the wrist, because I deserve it. Let's hope I don't make the same mistake again!