Category Archives: Medications

Imuran? No. Cellcept? No.

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I’ve totally neglected this blog, and I need to stop doing that. My problem is that I like to write posts that are somehow useful, and not just complaints or reposts of information that is better found elsewhere. However, I suppose that is how information gets in the hands of the right folks, eventually. Writing is also an easy habit to break, if you get preoccupied with other things.

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.

Sjögren’s Syndrome

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Sjögren’s syndrome, pronounced (SHOW-grins), is an autoimmune disease that features inflammation of the glands that produce tears, which leads to dryness in the eyes, and inflammation of the glands that produce the saliva in the mouth, which leads to dryness in the mouth and lips. It is one of the more common autoimmune disorders and is thought to affect over four million individuals in the United States alone.

You can learn more about Sjögren’s syndrome by visiting The Sjögren’s Syndrome Foundation, which was founded in 1983 and “provides patients practical information and coping strategies that minimize the effects of Sjögren’s syndrome.” The foundation’s website has a great deal of information, even though it doesn’t appear to have been updated recently. I’m not sure if it is even still an active organization, but I will send them an email and see if anyone is still home. Nonetheless, the site has a good amount of information.

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.

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.