FDA latest warning re: Xeljanz

What I don't understand is people who only post on here to complain about what "senior members" (whatever that means) are posting while offering zero input with regards to IBD. If you prefer Facebook, go on Facebook.

I agree ks, I only got my uc under control and myself off prednisone when I switched to a research based hospital with GIs who specialise in IBD.

Sara14 said...
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.

Not sure what the hostility is about but what I mentioned is directly what you were talking about. I said the increased risk would likely apply to both RA and UC patients taking Xeljanz, as there is no physiologic reason to think otherwise. You said that was incorrect. I cited a very detailed study showing that Xeljanz has a greater risk of malignancies and major cardiovascular adverse events compared to TNF inhibitors, which themselves have a greater risk than placebo. So I'm not sure where the confusion is as it's pretty straightforward.

And as I mentioned numerous times, this doesn't mean no one should take Xeljanz. Obviously for some the benefits outweigh the costs.

damo123 said...
The hostility here David is something purely related to a few of the more senior members who believe they know best about everything medically related. Your posts and research links are spot on but for some people rational, logical and respectful argument is a big challenge.

It is hard to present the alternative argument to them because it falls on deaf ears. It is more important for them to be seen to be right rather than to actually make sense (God I just thought of Trump there for a second!!). But I continue to believe that where senior members are giving significantly incorrect medical advise on here it should be called out.

Are you going answer people’s questions or are you just continue to attack people and crap post?

CCinPA said...
damo -- 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

quincy said...
Can the people who do it stop with the senior member comments? Name who you're talking about specifically instead of whining about your victim senior members complex.
Grow the f*k up already.

q

Possibly they mean me, but I've only been using HW for a couple of years so I don't think that counts as senior. They can't name specific members because that would go against the forum rules.

I have put damo on ignore. No time for gaslighting.

I also reported the thread to the mods as it has gone way too far.

Post Edited (poopydoop) : 9/19/2021 11:19:41 AM (GMT-6)

CCinPA said...
I was on high doses of prednisone on and off for almost 2 years...
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 am so glad that you no longer have diabetes.

I am one of those lucky few who during my first flare I experienced severe abdominal pain after eating. Obviously lost a considerable amount of weight. My GI prescribed prednisone which I refused despite the pain since I am prediabetic and have diabetes within my immediate family. I wasn't sure my sugar levels would return back to normal after a course of pred that would most certainly spike my sugar into the diabetic range.

I was also prescribed antibiotics for a perianal abscess that occurred at the same time. Luckily for me I am also one of the few UCers who is helped by antibiotics (about 15 percent of us) and they snuffed out my flare. I take them only when needed. Like many meds, antibiotics might only work until they stop working.

BTW fear of diabetes more so than UC is the reason why I monitor my diet so carefully.

I am disappointed my post and question re: Xeljanz had to turn into a somewhat uncomfortable thread with people calling each other out. Is there a moderator for this site? None of us are experts by any means. I can only say I've been dealing with UC since my late 30s. I am 61. I had my absolute worst flare in 2019. Absolutely NOTHING worked. Not enemas, not prednisone, not increases in other meds I was taking (Asacal being the last). I wore diapers for 3 months. My quality of life sucked. My daughter was getting married, and I was panicking because I didn't think I could make it through the ceremony and wedding without having an accident. Xeljanz changed my life. I'm now almost 62 and am in the best shape ever. I work out every day, I take no other meds except for vitamins. It has been lifechanging for me. I will not change a thing. Everything in life has a risk. When Xeljanz stops working for me, I will consider something else. I hope that we can all be kinder to each other, and that whatever you take that works for you, whether it is another drug or a natural way, I wish you the best. Just be kind.

MLP2060 said...
Forgot to ask 2 things: Someone mentioned other Facebook IBD support group sites. Can you pass them along? Also, someone mentioned some natural remedies that have helped. Can you pass that along as well?

That's pretty horrifying, I'm glad to hear you're finally doing better.

This is one FB group I'm part of https://www.facebook.com/groups/SCDers it's for those following The Specific Carbohydrate Diet. This would be one of those "natural remedies". You get people on both sides....People with IBD and ever gastroenterologists who say diet has nothing to do with it, and then SCD fanatics who say diet alone will cure most people. As usual, the truth likely lies in the middle. Diet has been shown to be helpful in a number of studies and thousands have reported anecdotal benefits to diet, but most will likely need medication. I think of the diets out there SCD and IBD-AID are helpful but others can be as well.