Fearful of Biologics
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!
Hi
,
So glad you found us, welcome to the community!
I completely understand your worries about starting biologics, the list of side effects is pretty daunting! I have never taken that particular medicine but I can tell you that I am so glad I decided to start taking Enbrel as it has really changed my life.
When I started I was unable to walk without crutches and was in agonizing pain all day long but now I am fully mobile and my pain has reduced by so much. In terms of side effects the only one I have experienced in my two years taking it has been that I sometimes get a bit of a runny nose on injection day. Which I think is definitely a good trade off considering all the benefits I have felt for it!
I hope if you chose to start taking it you have felt some kind of relief! Let us know what you decide and how it goes for you!
Sending love,
James (Community Member)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.
Welcome to the community! We are so happy to have you! I can tell you that I felt the EXACT same things when I was first diagnosed and in the first couple of years after (and sometimes I still do!). There are many people with this disease that find it debilitating—in fact, I think the majority of us do. I felt very reluctant and scared to get on a biologic medication myself and actually tried many different types of alternative therapies before finally deciding to start one. I wrote about it recently here:
-https://ankylosingspondylitis.net/living/alternative-therapy-regrets
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:
-https://ankylosingspondylitis.net/cancer
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:
-https://ard.bmj.com/content/76/3/497.abstract
-https://creakyjoints.org/treatment/tnf-inhibitor-biologics-do-not-increase-cancer-risk-in-survivors/
-https://www.rheumatologyadvisor.com/home/topics/rheumatoid-arthritis/nonmelanoma-skin-cancer-risk-increased-with-anti-tnf-use-in-ra/
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:
-https://creakyjoints.org/about-arthritis/psoriatic-arthritis/PsA-overview/anti-tnf-biologics-cancer-risk-psoriatic-arthritis/
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:
-https://creakyjoints.org/treatment/xeljanz-study-heart-cancer-risks/
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)
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!)
I understand that it will be a big step to take unsure how it will affect you. Like my colleague Rick I’ve been on biologics for a long time. For me it’s 14 years. Enbrel and Benepali are the ones that I got. To reassure you a bit I never had any side effects. The difference I experienced with before and after injecting was night and day for me. I hardly experienced any inflammation pain anymore. I was given so much of my life back. And I do wish the same for you. René - Community advocate.
I can understand your reluctance. But let me tell you that I have used Biologic medications for just over 20 years now with no cancer outcome. I have not used Xeljanz but i have used 5 others. I hope you will address this and other questions about the medications and feel free to ask them. I knwo that for me, not correcting the joint deterioration in my joints. That is virtually certain if the autoimmune system is not suppressed. I know for instance that if you lose joint function it is impossible to get back short of joint replacement.
I hope you are able to talk to your doctor soon. For me these medications have been life saving.
rick - moderator
