She’s tried all kinds of medications for reflux over the years. The last one that was prescribed for her was Zegrid, but that is no longer covered by insurance because it is available over the counter. I still don’t understand that logic. We pay a bit more for it now since it’s not covered, but it still seems to do a good job.

Things that seem to help in addition to the medication are:

• Avoiding carbonated beverages
• Reducing caffeine
• Avoiding late night snacks

My wife has a terrible time following any of these tips. Thank goodness for medication.

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 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.

Over the years, we’ve gotten pretty good about dealing with the ER. Here are some of the things we have learned:

• Bring a copy of all of the medications currently being taken and a list of all known health conditions.
• Make sure that your primary care doctor and/or rheumatologist is informed about your visit to the ER.
• Try and get a copy of all of your test results sent to your primary care doctor and/or rheumatologist so that they don’t have to order the same tests when you go in to see them.
• Bring a book or something to read, because it you may be there for quite some time.
• If you can, try and get on a fast-track so that you can be seen quickly, because you don’t really want to hang around with a bunch of sick people when you are immuno-compromised.
• Sneak in some food and water if you can.
• If you wear contacts, take them out before you go.

That’s all I can think of right now. If you only remember one suggestion, make it the one about bringing a copy of your known health conditions and your medication. That alone has saved us a ton of time and grief.

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.

I did my best to keep her from getting dehydrated, using ice chips before moving on to water. She seems to be feeling a little better, but now she has a whole day where she’s missed most of her medication.

We have a great prescription plan with my medical insurance, so the cost is rarely an issue. I have a certain amount of money taken out of my paycheck each month before taxes, and that gets put into a flexible spending account, which I then get reimbursed from throughout the year. This is the only way we can get a break on taxes as far as our medical expenses are concerned.

The most difficult problem is keeping track of what medications need to be refilled, so that we can order the refill and pick them up before we run out. I know that sounds like a no-brainer, but when you are dealing with over a dozen medications that have to be approved by four different doctors, coupled with the insurance company that will not re-fill a prescription unless you order the re-fill within a certain window of opportunity, then you have a situation that can get ugly very fast.