I hope that it’s approved and my wife gets a chance to try this.

If you get any additional information, please post it in the comments.

My wife’s lupus hasn’t been in remission since I’ve known her. I’m not sure that it’s ever been in remission, but we’ve been talking about what that would be like. How would it be? Would she be able to reduce the amount of pain medication she takes? If your lupus is in remission, does that mean that you will no longer be light sensitive?

Wellness is not something we’ve had to deal with in the last ten years. How would that change our daily routine? Would it change the tempo of our lives? Probably not. My wife does whatever she wants to do, regardless of her health. Would it change how we relate to each other? Probably not. I bring her coffee in the morning because I love her, not because she has a hard time getting up.

Maybe it would just be a matter of not having to worry so much all the time. That would be nice.

Of course, there’s no guarantee that Benlysta will be effective, or even approved by the FDA, so this thinking may be all pie in the sky, whatever that means. But it can’t hurt to be hopeful, right?

I’ve never really understood this concept. So a doctor prescribes a patient a particular kind of medication, let’s call it Loopie, just for fun.

So Loopie is a special medication that is available only by prescription and costs quite a bit of money. Thank goodness that the health insurance I pay for every month covers this very special drug, Loopie, and I only have to pay a fraction of the price to get it. Now, someone decides that Loopie isn’t quite so special anymore and they start selling the drug over the counter for a fraction of the price that my insurance company was paying for it before.

Yay! I think. Now, it will be much cheaper for my insurance to cover the cost of this great medication, Loopie OTC. However, the insurance company says, now that anyone can get Loopie, we don’t see why we should have to pay for it. Pay for it yourself.

Wait a minute, insurance company. If you were willing to pay the pharmaceutical company $200 for the month supply of Loopie you used to require me to pay $20 to pick up from the pharmacy, why is it that you aren’t willing to pay at least a portion of the $25 that I now have to pay for Loopie OTC?

Am I alone on this one?

According to Sanofi-Aventis, the manufacturer:

Arava (leflunomide), a disease-modifying antirheumatic drug (DMARD), helps improve rheumatoid arthritis symptoms such as joint swelling and tenderness. But unlike many symptom relievers that only help relieve pain and swelling, Arava actually helps slow the progression of joint damage caused by rheumatoid arthritis. In addition, Arava is the only oral DMARD indicated to improve physical function.

It’s pretty exciting to think that a drug will not only take care of Jenny’s RA symptoms, but also help reduce the damage to her joints. We were told that it can actually heal joint damage that has already occurred, but that wasn’t mentioned in the blurb from the manufacturer, so I wonder about the accuracy of that claim. Regardless, Jenny’s been on it for a couple of weeks now and it does seem to be helping her joint pain, without producing any noticeable side-effects.

If you’ve had any experience with Arava, I’d be interested to hear what you thought.

I will write more on this later, but I wanted to at least get the ball rolling on this topic. We have had a lot of trouble over the last six months with my wife’s lupus medication. She stopped the Cellcept because she was having headaches and problems with acid reflux. Then she moved on to Imuran which we thought was fine, but ended up creating flu-like symptoms that took forever to tie back to the Imuran. We seriously thought she was just getting the stomach flu every few weeks. Very soon after she stopped the Imuran, the vomiting and nausea stopped and everything was fine, except that her counts were all messed up again because she wasn’t taking any immunosuppressants.

So what do we end up going back to?

That’s right, she was put back on Cellcept, which lasted about a month before she couldn’t take the headaches anymore.

There’s got to be something else. Methotrexate was a total disaster, so that’s out. Cyclophosphamide is another option that hasn’t really been discussed. I assume there’s a reason for that. I will have to ask my wife to check with her doctor on that one. But wait, isn’t there some new drug? We keep hearing about Benlysta, but we don’t seem to have any access to it.

I would recommend that you first visit the Sjögren’s information page at the Lupus Foundation of America for more information.

My wife has just recently started taking Evoxac, which is a medication for Sjogrens. It’s pretty early to tell if it’s making any difference, but we have had an odd episode where she woke up coughing from too much saliva, which was a little scary.

The current poll is set to end on March 3, so if you haven’t participated, there is still time.

Like Cellcept, Imuran is an immunosuppressant medication, commonly used for people who have had kidney transplants, but it has a secondary use as a medication for rheumatoid arthritis. I’m not sure if its use in lupus is related to its use for arthritis, or just the fact that it’s an immunosuppressant. I suspect it’s a bit of both.

Like with any change in medication, I think it’s a good idea for both you and your spouse to keep an eye out for any changes that may indicate serious side-effects or reactions.

So, does anyone have experience with Imuran?

Check out 50 Years Without a New Lupus Drug! What Does it Mean to You? over at On the Road to a Cure. It’s pretty ridiculous when you think about it. This sentence really stuck in my mind:

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

For those of you who deal with the side effects of lupus medication, you know that this can be true.

Check out the article. It may be too late to give feedback but we can check out the results when they are posted.

I thought I would wrap up the medication series by talking about what happens when you get medication overload. I hate taking medicine. I will deal with a headache all day, just because I don’t like taking medicine. Now I think of my wife, who has to take a couple dozen pills every day, and it doesn’t surprise me that occasionally she just doesn’t want to take anything ever again.

There have been numerous occasions over the past decade when my wife was reluctant to take her lupus medication. In some cases she either limited the amount to a lower dose or stopped taking the medication entirely.

In my experience, there have been three reasons that my wife has been resistant to taking medication since I’ve known her. She’s either been afraid of possible side effects, afraid of becoming addicted to the medication, or has been afraid that it was the medication that was causing some of her problems.

The most common medication with side effects that has caused her concern is Prednisone, which has been an important part of her treatment in various dosages, but trying to convince a woman to take large amounts of medication that can cause sudden weight gain, increased hair growth, fragile skin, and make your face swell up, well, that’s a tough sell.

Her concern with addiction is associated primarily with her pain medication; although, she has also been concerned with taking sleep medication for long periods of time as well. I just try and remind her that while her pain medications should be handled with caution, her doctors have prescribed them for a reason. She needs to be able to keep the pain in check so that it doesn’t make her overall condition worse than it is already.

It is usually through the often well-intentioned advice of a colleague that my wife becomes concerned that it is actually her lupus medication that is causing her lupus. It is often accompanied by offers to sell her some type of juice or herbal supplement. Reviewing her medical history and initial diagnosis is usually enough to get her back to taking her medicine.

This was re-written from a draft of an article that I wrote for Lupus Now.

Since we have small children around, one of the first things that I did was to buy a small safe. I know that seems extreme, but I got it on sale at Harbor Freight on sale for $30. We had been keeping everything on a shelf in a cupboard with a child safety lock, but I decided to go with the safe for a number of reasons.

• Many lupus medications are deadly if taken in excess or with other medications.
• You would be surprised how some of this medication, especially the narcotics, can suddenly sprout wings and disappear. We’ve never had a whole bottle stolen, but we noticed a few pills missing here and there when we would travel or had lots of people in the house. I know that’s sad, but it is true.
• I think it makes a difference for the kids to understand that the medicine that mommy takes is not like the medicine that they take when they get sick. By putting it all in the safe, they know that it’s dangerous.

Now that the medication is stored safely, you need to have a way to organize it so that you can keep track of it throughout the day, without spending too much time on it.

We have tried a number of pill organizers over the years, but the MED SUN 7 Day Large Medication Planner that we use right now, has been the best of the lot. It has seven large detachable bays with sliding tops that are labeled with the days of the week. Each bay has four compartments to place medication that is taken at different times during the day. All of the bays fit into a tray with a lid that keeps everything together for the week if you are traveling.

My wife and I sat down and went through all of her medication and I typed up the name and dosage information and put it on the top of the lid so that we don’t get confused about what she’s taking. I don’t know about your situation, but my wife’s medication gets changed often.

I usually put together all of the medication for the week and then my wife takes out her medication for the day and will carry that around with her. Having to do it only once a week makes it easier for us. It also helps to keep track of what medication needs to be refilled. If a particular medication is going to run out during a week, then I take the bottle out of the safe and set it on my dresser to remind me to refill it.

I hope that this was helpful. Please feel free to contribute some ideas on how to deal with stuff like this, and thank you for your support over the past few weeks.