May 11, 2021
Hello all! I’ve just recently created a profile, and so happy I finally did. It’s been about a year since dx, currently on sulfasalazine and prn meloxicam. I’m 36 yrs. old, and most days, my pain is pretty debilitating. (Mostly lower back, neck and feet) I have little ones, so as much as rest is wanted, I’m not always able. Since November, my doctor has wanted me to try Xeljanz. I know I need something, as the sulf. isn’t really effective at all, but I’m so afraid of the side effects that come with these medications! I have a family history of leukemia already, and the thought of having to choose between [potential] cancer risks vs. spinal deformities is terrifying! I just wanted to reach out to see how others have made peace with their treatment choices and also, if anyone has any specific experience with taking Xeljanz. Thanks for the time, and for all of the information shared on this site!
Lawrence "Rick" Phillips
May 12, 2021
I hope you are able to talk to your doctor soon. For me these medications have been life saving.
rick - moderator
May 12, 2021
René - Community advocate.
May 12, 2021
Thanks to you both for the encouragement! As I skim through all of these wonderful posts by the community, I’m starting to see a bit of a pattern... the road to wellness has to begin with the mind! Perhaps I’m still not over the “shock” or “denial” phase of the whole AS diagnosis. Thinking I can somehow heal this monster with a salad or some yoga... I’m happy to hear that your medications have been so beneficial! I think it’s definitely time for me to tackle this thing in a way that does give me my life back. Thank you again... Great to hear from such wonderful people.
May 13, 2021
Ultimately, I couldn't live with the pain anymore and felt I had to take a leap forward even though I was terrified, too. Several doctors urged me to because I already had joint damage on my scans—and besides that, the idea of living with no quality of life felt scarier than accepting a very small increased risk of cancer if I get to enjoy the years I'm here. Interestingly, in more recent years, researchers have found that the link between anti-TNF biologics and cancer may not exist after all. Patients with autoimmune and autoinflammatory disease have a higher risk of cancer than the normal population in general, likely because of the chronic inflammation and immune dysregulation:
And while more research is needed, several studies have shown no increased risk of cancer in people who take biologics, with the exception of non-melanoma skin cancers. Here is some info to check out:
I had basal cell carcinoma during anti-TNF therapy, but thankfully it was easily removed and caused me no trouble. I do make sure to get regular skin checks because I am aware of this risk now. Researchers are not sure if melanoma risk is increased with biologics, so that is an open question. There MAY be an increased risk of lymphoma, but researchers are not sure whether that is due to the disease itself or the treatment:
As far as Xeljanz goes, I have never taken it, but a very new study came out that compared it to the anti-TNF biologics and found that those taking Xeljanz had a higher incidence of cardiovascular events and cancer—but more data is needed to understand the significance of this finding:
Perhaps you can share this with your doctor and discuss whether one of the anti-TNFs could be a good place to start, if cancer is one of your concerns. However, I do know several people taking Xeljanz whose symptoms have improved and they've had no side effects thus far, so as with everything, it's a risk vs. benefit analysis and it is not easy. I hope you have a good doctor to discuss this with. Please come back and let us know how you make out if you are comfortable!
With you in spirit!
Diana (Team Member)
May 22, 2021
It's a rollercoaster ride, for sure. But know you're not the only one going through these ups and downs! I definitely struggled with this with my husband. The idea of going on a biologic scared us both so much. Looking back, I can't believe we waited as long as we did. (Hindsight is 20/20!)