In one of the chapters I wrote for our book, Building Your Support Team, I told a story of the time I “fired” a gastroenterologist because he took a directive approach with me regarding a medicine he prescribed that I had strong concerns about. I also wrote about how my next gastro doctor prescribed the same medical regimen as the first, but because he addressed my concerns and explained the current thinking, I was comfortable enough to follow the advice.
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DISCLAIMER: When you read the specifics of what I’m about to tell you, know that I’m not making recommendations about your treatment. I hope and trust that you and your medical team have the most up-to-date information to make the best possible decisions for your situation.
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I’ve mentioned in past posts that my symptoms have been in remission for some time (3 years now). As a result, my doctor has gradually reduced the dosage for Imuran (an immune system suppressant most often used for kidney transplant patients that has been helpful in dealing with rheumatoid arthritis and Crohn’s Disease symptoms), and my Remicade treatments from once every 2 months to once every 3 months. Hooray!
Last week my doctor suggested that I discontinue taking Imuran. Why? There are several factors that went into his recommendation.
1. in the last year there’s been an increase in the incidence of lymphoma, suggesting that long-term use of Imuran carries some additional risk factors not previously known. What are the exact numbers? Not huge in the bigger picture, but enough to cause concern. Up from 4% to 6% in one year.
2. One of his patients just developed lymphoma at age 25, and he’s concerned. It’s a little more personal to him.
3. I was taking a low dose of Imuran and I’m symptom free. This gave him some freedom to make this recommendation. If I’d been taking a larger dosage, and/or was struggling with symptoms, he would have hesitated to suggest we try eliminating the drug altogether. So, it’s a weighted recommendation as all such decisions should be.
4. There’s new evidence that when Remicade works (it doesn’t for everyone) it may be sufficient on its own once symptoms go into remission. The gastroenterology doctors are still sorting this one out.
In many cases, improved quality of life and the clinical benefit immunosuppressive therapy provides still outweigh potential risks. 4 years ago, when my doctor was concerned about a possible need to remove of a portion of my colon, a hard-core medical response would have outweighed these risks. I’m sure that if my symptoms come back, we’ll revisit this decision.
I did a little Internet research and found some variance in the findings. I suspect, as one article suggested, that like everything else having to do with the body, there a variety of contributing factors to the increased incidence of lymphoma.
Rosalind and I believe that it’s important that the people on your team – medical and otherwise – communicate and disseminate information with respect. Perhaps you can see why I like this guy. He’s fully aware that when it comes to autoimmune diseases, the regimens for care are still experimental. He always keeps me up-to-date and continues to take a consultative approach. Even if he thought I should continue with Imuran, he would have let me know what he’d learned. I could ask for nothing more.
Joan
P.S. I don’t always like reading about the techy medical stuff, especially if it scares me. Risk factors are just that. They’re never absolute.
I have RA. I’ve been on Methotrexate (also an anti-rejection medication) and Enbrel (very similar to Remicade). I stopped taking Methotrexate on my own, and I advised my doctor why. I began doing research and going to through allergy test to find if certain foods were causing allergies, as I had suspected.
I cut out several allergens and I was significanly better. But now I doing poorly again. Time to bring on the methotrexate. But I do worry about the risks of cancer. Considering I have 2 auto-immune diseases, I can’t help but to think I am at greater risk for cancer.
But congrats to you on not needing the meds. Maybe this time around, I can be off the meds for a good long while.
Just wanted to let you know that I’ve posted a review of your book on my blog. You can view it here:
http://gettingclosertomyself.blogspot.com/2008/07/women-work-and-autoimmune-disease-keep.html
RXgirl, thank you for writing about your experience with meds. It took 13 years before my body really seemed to get sorted out with this, and nameless stops and starts with the medicines, including a change in diagnosis. I do think it’s good to remember that the statistics for cancer are actually low, even though higher than for people who don’t take these drugs.
At the time I decided to surrender to taking Imuran, in addition to the conversations with my doctor, I read an article in the Crohn’s Colitis Foundation magazine that said one of the greatest contributing factors to recurrence of symptoms is NOT taking meds consistently. I saw myself in the description so I decided to buckle down and “surrender” to the routine. It was not the only thing I did to help my body get stronger, but I feel it was important at the time.
I applaud you for your continuing intention to find your way to wellness as naturally as possible, whenever possible. There’s no doubt it’s a tricky road. If you’re like me, you might think that because you have to go back to taking the drug, you failed. Not so. You’re body just needs the help.
Be well,
Joan
Thanks for your nice comment, Joan!