Tag Archives: medication

Goodbye Cellcept

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istock_000004628823xsmallThe rheumatologist suggested that my wife move off of Cellcept, which she had been taking for some time now, and move to a similar type of medication called Azathioprine, or Imuran by brand. Azatioprine is pronounced (aze-uh-THIGH-oh-preen) by the way. I have no idea why it matters to me, but I do like knowing the correct way to pronounce these things.

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?

50 Years and Still Waiting

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I meant to write this weeks ago, but life has been more challenging than usual around here.

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.

Emergency Room 101

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We probably make a trip to the emergency room at least once every three or four months. We made a trip last week because there was some concern that my wife could have had a small stroke. That didn’t end up being the case, but we did have to make a trip to the ER for an MRI just to make sure.

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.

Dealing with Medication

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We’ve encountered a number of problems as far as dealing with medication is concerned. Today, I’d like to talk about was to store and organize the huge amounts of lupus medication you may have sitting around.

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.