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FDA latest warning re: Xeljanz

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Posted 9/17/2021 8:05 AM (GMT -5)

David1991 said...

The risk would likely still be there, especially the risk for malignancies., and that's just compared to TNF inhibitors, which themselves already have a higher risk of malignancies compared to placebo.

With that said, I think it may be necessary for many to go on these drugs. I myself am finally about to take the, admittedly scary, step towards biologics as diet and mesalamine has failed to put me in remission.



Well, that's not what leading GIs have had to say about Xeljanz. I could find and post a bunch of links for you but I really don't feel like taking the time in this toxic thread. The added warning is about heart issues, like the blood clot thing, not cancer. People post here like they are experts without even reading a basic article or news release about the very topic we are discussing.

CCinPA is exactly right. And I've NEVER been "blase" about taking any biologic, least of all Xeljanz. In fact, I was so terrified of Xeljanz that I actually considered not even trying it at all and jumping right to surgery! Posters like van jordan who make things up and fear monger don't help those of us with anxiety.
Posted 9/17/2021 8:29 AM (GMT -5)

poopydoop said...

Who says we haven't discussed with our doctors the balance of risks??
It is a fact that long term prednisone use damages every person who takes it, whether that be through osteoporosis, osteonecrosis, glaucoma or diabetes etc. ks1905 has a hip replacement. I have severe osteoporosis and have to take horrible drugs to prevent a spinal fracture. Sara had a stress fracture in her foot. And that's just 3 people posting on this thread. No one can escape damage from prednisone when taken for years. Whereas most people who take xeljanz or biologics for years will not experience any lasting side effects.
VJ has been on steroids for years yet claims to be healed from a "natural regime" and posts in a way that makes fun of people on biologics and xeljanz.
I'm not trying to downplay the seriousness of these drugs (and I really wish you'd stop making personal attacks because of something you don't like that i posted weeks ago, it just makes you look snarky rather than informed).
I'm trying to put the risks into perspective.

And as CC has said, when you get to the point in your UC where you have been flaring non stop for years, have no quality of life so that you think about suicide anyway, and your doctor says "your options are xeljanz or surgery", then it's a different perspective than if you've been able to manage your symptoms with only 5ASAs (or diet for that matter)

Two stress fractures! From walking 2 easy flat miles.

And yep, exactly.
Posted 9/17/2021 9:54 AM (GMT -5)

Sara14 said...

Well, that's not what leading GIs have had to say about Xeljanz. I could find and post a bunch of links for you but I really don't feel like taking the time in this toxic thread. The added warning is about heart issues, like the blood clot thing, not cancer. People post here like they are experts without even reading a basic article or news release about the very topic we are discussing.

CCinPA is exactly right. And I've NEVER been "blase" about taking any biologic, least of all Xeljanz. In fact, I was so terrified of Xeljanz that I actually considered not even trying it at all and jumping right to surgery! Posters like van jordan who make things up and fear monger don't help those of us with anxiety.


https://clinicaltrials.gov/ct2/show/results/NCT02092467?view=results

It's pretty clearly seen here. Again, not saying you shouldn't take it but cancer risk is greater with Xeljanz compared to anti-TNF (HR 1.48), which is already greater itself than placebo.

In fact, the risk of malignancies for Xeljanz compared to anti-TNF was even greater than the risk of Major Adverse Cardiovascular Events (HR 1.33)
Posted 9/17/2021 12:31 PM (GMT -5)
It is a known fact Sara that has fallen out of many drug trials that the Jax STAT inhibitors cause a lot more side effects than other biologicals. I'm not sure what you are picking up from your GIs but if the opinion is that the safety profile of these class of drugs is similar to anti TNFs and anti-integrins then that is just plain wrong. This was known even before these drugs were tested as their mechanism of action shuts down a lot more cytokines. See Bill Sandborns latest video comparing the side effects of a whole range of biologicals on Youtube.

I firmly believe that if a poster queries a side effect here then while we can all give our own ancedotal beliefs on how the drug has worked for us we should point such posters to the medical facts and published results. Too much of "This works for me consequently it must be right for everyone" among the senior members. UC does not work like that.
Posted 9/17/2021 12:37 PM (GMT -5)
Here here, Damo. And it is actually quoted as a rule on HW not to give generic medical advice. Give your own experience people but don't give the opinion that that experience will be the same for all.
Posted 9/17/2021 2:08 PM (GMT -5)
Jeez, how does it go from FDA Latest warning re: Xeljanz and Black Box Label discussion to the below comment?

damo123 said...

I firmly believe that if a poster queries a side effect here then while we can all give our own ancedotal beliefs on how the drug has worked for us we should point such posters to the medical facts and published results. Too much of "This works for me consequently it must be right for everyone" among the senior members. UC does not work like that.

Just remember that UC patients have a 20+% chance of needing their colons removed over their lifetimes due to refractory UC or cancer/precancer in their colons. Your risks are a lot higher than bad medication outcomes when your IBD is not well maintained, plus your quality of life is affected. Everyone should make an informed decision with their GIs and they should know and UNDERSTAND the risks about THEIR decisions.
Posted 9/17/2021 3:21 PM (GMT -5)

damo123 said...
Too much of "This works for me consequently it must be right for everyone" among the senior members. UC does not work like that.


Nobody on this thread has said that?
Posted 9/17/2021 3:47 PM (GMT -5)

CCinPA said...

I don't think anyone is being blase about these meds, but rather are just trying to reassure those who need them that the FDA requiring warnings does not mean that it is a high risk to take them. If it was really a high risk the FDA would stop the distribution of the drug altogether. They have done that with other drugs that had high risks.


Nobody is being blase and nobody is telling anyone else what they should do. A few people who are affected by the risks on xeljanz (i.e. people already taking it) have stated here that they will keep on taking it because of the benefits they have experienced from being on it.
Instead of seeing that as blase, maybe consider how bad their symptoms and life might have been to force them to accept the risks of these drugs.
And by the way birth control pills have a pretty high risk of thromboembolism too, as well as increasing the risk of breast cancer, shall we bash women who take those as well?
I do agree with CC that until you're faced with a hard choice, you don't know how you will react. At one point I was never going to take immunosuppressants because they were for "other people" who didn't know how to look after their bodies with diet and other natural remedies.
I made the comparison of the risks with prednisone because it is somehow seen as "safer" but it has damaged far more UC patients than any biologic.

Post Edited (poopydoop) : 9/17/2021 2:56:58 PM (GMT-6)

Posted 9/17/2021 7:47 PM (GMT -5)
Damo...you are rude and ignorant. And with are JAX inhibitors, hmm??? Please send us some more YouTube links. I've never ever ever said what you justsaid. Bye bye now.

David, that isn't at all what I was talking about.

Mods, where are you here? Should be locked. Oh right, only certain members are targeted here with banning and locked threads.
Posted 9/18/2021 2:48 AM (GMT -5)
I've been saying this for years. The reason HW has no members these days, and it is true for all forums on HW, is that on each you get a small set of senior members who dominate and god if you disagree with them then you are just annihaliated. The new and gentle minded posters just get fed up of this and leave. The senior members break every rule on here but the mods are slow to do anything about it. Half the stuff that comes out of the older and senior members on here is utter garbage.

Fair dues to Damo, he has the balls to stand up to the rest of you.
Posted 9/18/2021 2:54 AM (GMT -5)
It just takes so much energy. When you share links with facts, scientific results and statistics you get accused of posting "statistics and bs", and then when you don't post a link to back up every fact you get accused of "giving generic medical advice".

I think some people might need to educate themselves on what long term prednisone use does to people, and yes the risk of acquiring a serious problem is 100%. That's why IBD treatment is shifting away from chronic pred use.
Posted 9/18/2021 2:59 AM (GMT -5)
I'm sorry you think like that Sara. Personally I would not be one who has to resort to name calling. I'm very glad you are in remission from Stelara. However in this thread, as on others lately, there is false information on a vitally important subject that has been given by a range of the more senior members on here.

When that happens I will continue to call that out in a respectful way... but will not resort to name calling.
Posted 9/18/2021 2:59 AM (GMT -5)
And something else to consider- while xeljanz may have a higher risk profile than tnf inhibitors, many people taking tnf inhibitors use imuran at the same time to manage their symptoms. The combination of ibd and imuran is known to be significantly more risky in terms of immunosuppression and malignancies than without imuran. Unless the guidance has changed recently, one does not use imuran with xeljanz.
Posted 9/18/2021 3:05 AM (GMT -5)

damo123 said...
I'm sorry you think like that Sara. Personally I would not be one who has to resort to name calling. I'm very glad you are in remission from Stelara. However in this thread, as on others lately, there is false information on a vitally important subject that has been given by a range of the more senior members on here.

When that happens I will continue to call that out in a respectful way... but will not resort to name calling.

Well you've called me names before. Which false information are you referring to?
Posted 9/18/2021 3:15 AM (GMT -5)
Never called you names poppy. But as you once said yourself to me...."if you don't like my posts then why read and react to them"!!!!
Posted 9/18/2021 3:25 AM (GMT -5)
While I do not want to get directly into this debate or argument I do think it is the case that there is an amount of information provided on these forums that is simply not true. There is also some very good information and well-merited information provided.

You will have quite worried posters come on here who are maybe looking for an opinion outside of WebMD and the like. For those of us who use the website more often I think there should be an onus on us to not overly worry or paint incorrect pictures to these anxious members on drug treatments and side effects. We are not doctors or nurses. We should be more careful. I think the moderators could do a better job stepping in on these topics too but I take the point it might be hard to regulate entirely.
Posted 9/18/2021 7:15 AM (GMT -5)
I have been on Xeljanz since March 2019 and it has been the wonder drug for me.
I can hardly remember how bad it used to be as these days I live a normal life, no rushing to bathrooms etc or planning where the next one will be when away from home .
For my fellow UC folks I am now 80 years of age and yes I will continue with my Xeljanz.
Posted 9/18/2021 7:31 AM (GMT -5)
damo, I will ask again -- what are you using to treat UC? Any meds or just natural? Not bashing, just asking to get an idea of your experience with these meds.

Also what do you mean by this: "However in this thread, as on others lately, there is false information on a vitally important subject that has been given by a range of the more senior members on here." Could you share what false info was given? I too have seen false info, but not from the members I think you are referring to.

btw -- Sara is in remission on Xeljanz, not Stelera.

steve_rd -- care to provide and example of "utter garbage" that was shared by a senior member?

For me, Healing Well has been a blessing. It provides a wealth of info that I would never have known otherwise. For example, I found out about rectal meds here. My docs never mentioned them and I had to ask, insist even, to get a script to try them. Another example: my docs didn't know that Stelera was approved for UC a couple years ago until I recently told them. And another example: before I went on biologics I was trying lots of things to avoid them. That's how I know that for me diet can play a role with some symptoms, but has little affect on my UC. But I did hear about an alternative treatment here -- nopal water. While it didn't seem to work for most people it did work for me for over a year and was able to keep me off of biologics ... until it stopped working.

I was on high doses of prednisone on and off for almost 2 years after Entyvio stopped working for me until I started remicade. During that time my glucose levels skyrocketed and my A1C level rose to diabetic levels so now I am classified as having diabetes. The glucose levels and A1C have dropped and are no longer in the range that would require any meds. I refused meds before because I wanted to see if the levels would drop when I was off pred and they did. Unfortunately, I will now always be classified as having diabetes. Pred is a drug that I have a love/hate relationship with. I love how quickly it can provide relief, but I hate what damage it leaves behind.
Posted 9/18/2021 7:43 AM (GMT -5)

steve_rd said...
I've been saying this for years. The reason HW has no members these days, and it is true for all forums on HW, is that on each you get a small set of senior members who dominate and god if you disagree with them then you are just annihaliated. The new and gentle minded posters just get fed up of this and leave. The senior members break every rule on here but the mods are slow to do anything about it. Half the stuff that comes out of the older and senior members on here is utter garbage.

Fair dues to Damo, he has the balls to stand up to the rest of you.


I definitely agree with your comment.
Posted 9/18/2021 7:48 AM (GMT -5)
I ask again -- please provide an example of the "utter garbage".
Posted 9/18/2021 8:43 AM (GMT -5)
The difference between Healing Well as a forum and the Facebook IBD sites, etc is enormous. There you will get a lot of genuine and compassionate interaction between members. I've stopped for the most part using HW and post on FB type IBD forums instead; they are better regulated. You will actually find a lot of the old members who used to post on HW in years gone by on these sites...some even use the same handle-names.

I don't like HW very much for the reasons being set out here and I also agree with Damo and Steve. At the rate we are going HW will be gone in a few years. There is a small set of members left on here who simply shout down on others if they post different opinions.
Posted 9/18/2021 9:57 AM (GMT -5)
How is it "shouting down others" to ask for clarifications of what is said or to offer facts that state a different point of view?

From what I have seen here at HW, it seems like there are basically 3 kinds of people who respond to posts -- 1) those who express support/compassion, 2) those who offer experiences or science based facts, and 3) those who disagree with either 1 or 2 (usually 2).

We don't all have to agree with everything on the sites, but I have to say that I lol'd for real at saying that FB is more "genuine and compassionate". Admittedly this is the only UC forum I go to, but Facebook is about the worst thing that has ever happened to humanity as a whole in my opinion. I spend less and less time there as I just don't see any benefit from it ... though I did recently see a recipe for homemade pimento cheese spread that was amazing and super easy, but come to think of it that was something I was probably better off not knowing lol.
Posted 9/18/2021 10:16 AM (GMT -5)
MLP -- you will need to determine your own tolerance for what the risks are and what your options are if you want to stop Xeljanz. Sorry that your thread has been sidetracked with bashing each other, but there is a lot of info here. Do your own research into the statements that have been made before making a decision.

Good luck and keep us posted!
Posted 9/18/2021 10:49 AM (GMT -5)
You should ask your doctor about other Jak/Stat inhibitors that are currently being studied and target only Jak1 or Jak3. They may provide you the same symptom relief but with fewer side effects since they are more specific.
Posted 9/18/2021 11:02 AM (GMT -5)

CCinPA said...

For me, Healing Well has been a blessing. It provides a wealth of info that I would never have known otherwise. For example, I found out about rectal meds here. My docs never mentioned them and I had to ask, insist even, to get a script to try them. Another example: my docs didn't know that Stelera was approved for UC a couple years ago until I recently told them. And another example: before I went on biologics I was trying lots of things to avoid them. That's how I know that for me diet can play a role with some symptoms, but has little affect on my UC. But I did hear about an alternative treatment here -- nopal water. While it didn't seem to work for most people it did work for me for over a year and was able to keep me off of biologics ... until it stopped working.

I was on high doses of prednisone on and off for almost 2 years after Entyvio stopped working for me until I started remicade. During that time my glucose levels skyrocketed and my A1C level rose to diabetic levels so now I am classified as having diabetes. The glucose levels and A1C have dropped and are no longer in the range that would require any meds. I refused meds before because I wanted to see if the levels would drop when I was off pred and they did. Unfortunately, I will now always be classified as having diabetes. Pred is a drug that I have a love/hate relationship with. I love how quickly it can provide relief, but I hate what damage it leaves behind.

I think the best advice that I could give a IBD patient is to go to a GI who specializes in treating IBDs and not just a regular GI who does c-scopes and handles acid reflux. I originally started with a basic GI and I suffered because of his limited knowledge about and experience with UC. He did the basic Asacol and prednisone treatments, followed by hospitalization of IV steroids. No enemas, different steroids or immunosuppressants. I fired him and found a GI who focuses solely on IBDs. He has the experience of treating patients with these meds, their symptoms and access to information to answer my questions.

Finding a GI who has dozens of patients on Xeljanz might help you make a more informed decision on your risk factors and what’s best for you as a patient and treating your disease.

I understand that people live in areas without IBD specialists but it may be worth a trip for one or two visits if you have real concerns that you can’t get answered locally.
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