I am crushed. This is the one that actually helped me after being on Mtx, Enbrel, Humira, Cosentyx, Remicade, and Otezla - all of those had minimal to zero results. Now I find that there is an article from Feb 2021 about disappointing post-marketing study showing that individuals receiving Xeljanz were more likely to develop the major adverse cardiovascular events like heart attack and stroke, and more likely to have cancer than those receiving drugs such as Humira and Enbrel. I really don’t know what to do. I’ve been on Xeljanz since October 2020 and don’t know if I should continue. [Pfizer Shares Co-Primary Endpoint Results from Post-Marketing Required Safety Study of XELJANZ® (tofacitinib) in Subjects with Rheumatoid Arthritis (RA) | Pfizer] the press release came out Wednesday, January 27, 2021. https://www.pfizer.com/news/press-release/press-release-detail/pfizer-shares-co-primary-endpoint-results-post-marketing
That’s not the news you want, is it?
Still though, the total rate with Xelinjaz wasn’t that much higher - 2.55% of people with TNFi and 3.37% with Xelinjaz had events - most of which would have happened anyway, but there was clearly 0.82% extra events over and above the TNFi.
In the context of the study, what that means is that docs will probably choose to try the TNFi first, as the risk profile is a bit better.
But if you’ve tried the TNFi’s and they weren’t effective, then isn’t the comparison between untreated disease and Xelinjaz?
I’ve just recently had to move onto a treatment with a different risk profile - and though there are things I don’t like about it, it is better than the risk profile of the disease.
I know it still sucks. It’s obviously worth a conversation with your Rheumy, but you can take your time weighing up the pros and cons with her / his help.
Oh my gosh, I didn’t know that about the cardiac risks. I had heard about the cancer risks though. It is very scary. I am on xeljanz as well. It’s not an easy decision to make.
Xeljanz was my miracle until I got a rare lymphoma. I am so sick of being sick ( woe is me). I don’t know anymore…who knows if Biologics caused my lymphoma or just having the PSA ( and ulcerative colitis) caused it. Currently on Ortezla…not as well controlled as Xeljanz. ( prior to Xeljanz : Humira, Remicade, Stelera ). I wish I had other options. Going to get some Cortisone injections in my feet and piraformis
Thanks for sharing @Bow. I guess we all are on edge waiting to see if one or more of the potential serious side effects will catch up with us and lymphoma can be concerning. I think xeljanze is on its way out and Rinvoq will replace it. Maybe you’ll have success with it.
So sorry to hear - it’s hard enough trying to juggle PsA and UC, the added risks that can come with some of our medications - and then, as you say, to get a major diagnosis like lymphoma and not even be able to tell whether the meds contributed, it’s like we are trying to make decisions in a swirling fog of uncertainty all the time!
The direct contribution of meds to cancers has largley been dispelled https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947561/ Bow is correct just having an auto-immune disease adds all kinds of risk factors from heart to cancers (I’ve had 'em all) Here’s the cool thing whether your doc believes in a med/disease risk or disease/disease risk, It doesn’t matter. Just routine blood testing and continuum of care for PsA catches this stuff very quickly making it more of a bump in the road than a car swallowing pothole.
Kick starting this thread again. What I find so frustrating is when a drug is approved, accepted and distributed for years and then it suddenly has new warnings discovered by the test pilots…us. Xeljanz was approved around 2012 and it took 9 years of gathering information to increase the warnings. Now Rinvoq is the go to JAK inhibitor…will it also receive increased warnings? I appreciate @tntlamb with his no-nonsense understanding of the risk factors and we probably could use more good information here as to discovering when the risks outweighs the benefits. Usually, the benefits outweighs the risks but there are times when I wonder when it is wise to stay away from some meds even though approved. Pulling meds isn’t new to the FDA. I just don’t want to find out the hard way that I shouldn’t have been on something. Face it, political, legal and financial reasons are often used to determine how long a medication is approved and the best interest of the patient isn’t always central. My question is, How can we effectively help people make that difficult choice in choosing “risky” medication in light of not knowing how progressive PsA might be or not be?
Its a personal choice. When it comes to the meds we use, My rule of thumb is unless they have a black box warning, I don’t pay a bit of attention to the side effect warnings. Those warning come from users reports and are not vetted or researched. If a user reports they grew a wart on the end of their nose, its noted If a few more report warts, its listed. Black Box warnings are different. those effects are researched and vetted (to death) and you have some degree of certainty the risk is real. No thought is given to how real for most Patients. (Greatly over-simplified.
Janus kinase (JAK) inhibitors now carry a black box warning. I would have a serious discussion before using specifically your risk factors.
Now here’s the funny thing. I’ve been working as a hospice chaplain (limited basis) and primarily at the MD Anderson Center here in Texas. It is arguably the leading research facility in the world, The use of Janus kinase (JAK) inhibitors as a treatment for a number of forms of cancer is a priority and they are leading the charge.They have a number of effective treatment now in common use worldwide. If you read in the news about it, they don’t say Janus kinase (JAK) inhibitor Therapy, they say: “Cancer treatment without Chemo.” So my official word(not that I have anything more than an opinion) is: it as clear as mud. We just brought home a church member who is receiving this therapy. He has a required transfusions each time he has been treated.
My guess (and I have asked the rheumatolgists this question and each wrote it down is "is that the link. Anemia (usually from MTX) is an ongoing issue for us. the risk of pancreatic, kidney, liver, and bladder cancers from anemia is significantly elevated even up to five years after the deficiency is corrected. Nothing perturbs me more than the doc who says you are a bit anemic, but we will just follow it. Follow it where I ask?!!
Yep, I’ve got one Hematologist (for my bone marrow pre-cancer) who would prefer me on JAKs over TNF blockers, but the other doesn’t know, and I got silence and “oh right” when I mentioned an IL-1 blocker. Then the rheum likes JAKs for my heart, but the TNF blocker was kind-of working, so to me switching class seems pretty scary. Meanwhile the immunologist wants to try the IL-1 blocker and I’m frantically trying to understand how my own immune system works do I can figure out where to next!
Not more 60mg pred, that’s for sure
Anemia huh? Interesting…. Might have to follow that trail too. One thing I don’t have.
My personal experience is that my pre-cancer grows during growth/change of my immune disease (which logically follows as it is an immune pre- cancer). So as long as whatever I am on is WORKING, things are pretty quiet over on the pre-cancer front. But when I have an “escape event” eg the biologic fails, it seems to spike a growth spurt in the pre-cancer.