1st Remission result because of Stelara. OMG!!!

[JackStone]

Well, after 20 years of trying a variety of Aminosalicylates & Corticosteroids, Ustekinumab (or Stelara) has done the trick in less than a year.

I decided not to take Infliximab (Remicade) or Vedolizumab (Entyvio) and went straight to Stelara.

Kind of knew after the first 2 or 3 treatments that it was going to work.

I haven’t felt this normal since the late 90's.

It might work for you, speak to your gastroenterologist.

The folks who represent Janssen in my part of Canada are incredibly supportive.

Jack.

 

[Jo-mom]

So you have been fighting inflammation for 20 years? Well this would be a great feat for you then. That's so great! Do you have crohn's or UC? Welcome to the forum. Lots of good information here.

 

[kiny]

It might work for you, speak to your gastroenterologist.

The folks who represent Janssen in my part of Canada are incredibly supportive.

1 post, welcome.

You stayed on steroids for 20 years...amazing feat...are you actually a patient or are you promoting medication.

Generally patients don't call their own medication Aminosalicylates either. Pharmacists know this name, not patients.

 

[JackStone]

So you have been fighting inflammation for 20 years? Well this would be a great feat for you then. That's so great! Do you have crohn's or UC? Welcome to the forum. Lots of good information here.

I was diagnosed with Crohn's 20yrs ago and UC 5yrs ago.

 

[JackStone]

1 post, welcome.

You stayed on steroids for 20 years...amazing feat...are you actually a patient or are you promoting medication.

Generally patients don't call their own medication Aminosalicylates either. Pharmacists know this name, not patients.

I can assure you I'm a patient in NB. I prefer using the correct medical term since this battle has taken over my life for so long. You're darn right I'm promoting Stelara, it worked for me. But I'm truly supporting all options that Canadians should be made aware by their healthcare provider.

 

[Jo-mom]

Hi JackStone - glad it is working for you. Sorry you felt the need to defend yourself. Again, welcome to the forum. I know the correct terms of medications as well and I am a fellow Canadian with a young adult son who has crohn's. We also deal with Janssen for Remicade and they have been great to deal with.

 

[kiny]

You're darn right I'm promoting Stelara

Well. I like to know if someone is promoting a specific product on a forum, what the incentive is. Good luck with your disease, glad it helped for you.

 

[crohnsinct]

Wait...you were initially diagnosed with Crohn's and they changed the dx to UC? You almost never hear of that. Usually the other way around. Or do you mean you have both? Because typically if you have confirmed Crohn's else where and then develop colonic disease they would just say you have Crohn's that now is involving the colon.

Just super curious as to what you meant as my daughter has primarily colonic disease which was always dx'd as Crohn's given the stomach involvement and some ileal disease. She recently failed Remicade and is being treated with Entyvio and Entyvio isn't supposed to really work for Crohn's yet she is getting better (disclaimer she is also on steroids but as we taper she is still getting better) so I always wonder if there is any way you could have both diseases. Kiny? Any thoughts on that?

 

[kiny]

Wait...you were initially diagnosed with Crohn's and they changed the dx to UC? You almost never hear of that.

Kiny? Any thoughts on that?

It sounds very implausible to me in the Western world that one would be misdiagosed for 15 years. Misdiagnosis sometimes happens between intestinal TB and Crohn's disease in developing countries. But misdiagnosis between UC and crohn's for 15 years in the West, I don't see how that is possible.

Both diseases, never heard of that, would be very rare.

I don't know what to think of the story. On the one hand I don't want to offend the OP. On the other hand I also find everything about the story very out of the ordinary and odd.

 

[Scipio]

She recently failed Remicade and is being treated with Entyvio and Entyvio isn't supposed to really work for Crohn's yet she is getting better (disclaimer she is also on steroids but as we taper she is still getting better) so I always wonder if there is any way you could have both diseases.

Entyvio works fairly well for Crohn's - just not as well as Stelara or the anti-TNFs do. So it's not surprising that your daughter is responding to Entyvio. Nor is it necessarily indicative that she has both CD and UC.

As for the broader question, I have heard of people who had their Crohn's misdiagnosed as UC for a while, but I have never heard of a case where in the end it was concluded that the patient actually had both diseases. I suppose it's theoretically possible. In biology and medicine you can always find an exception to pretty much every rule. What I suspect would actually happen in the case of a patient who had both CD and UC at the same time is that the docs would not be able make up their minds and would just leave it as "IBD - Indeterminate."

 

[JackStone]

It sounds very implausible to me in the Western world that one would be misdiagosed for 15 years. Misdiagnosis sometimes happens between intestinal TB and Crohn's disease in developing countries. But misdiagnosis between UC and crohn's for 15 years in the West, I don't see how that is possible.

Both diseases, never heard of that, would be very rare.

I don't know what to think of the story. On the one hand I don't want to offend the OP. On the other hand I also find everything about the story very out of the ordinary and odd.

Again, I was diagnosed with Crohn's in 1999. After a colonoscopy was performed in 2014, my gastroenterologists confirmed that I also have UC.
Is it rare? Sure. But not impossible.
I would be more than pleased to have Dr.MacMillan release my charts for you.

Btw, I normally never post anything about my medical condition. Just felt this was important enough.

Social media...¯\_(ツ)_/¯

 

[newdiagnosis]

Glad that you are in remission. However, it seems rather odd that you were continued on steroids and aminosalicylates for all this time if your disease was not in remission.

 

[rentalalloy]

Stelara worked great for me! Six weeks after the infusion I was in remission. I’m a bad Crohn's patient so after I was in remission I never continued with treatment and it’s been a year and a half and for the first time yesterday I had a little rectal bleeding which stopped today!!! I just hate taking the meds because of the side effects. I have a friends whose cousin is on a heart transplant list because of meds she took for Crohn’s. I wish you the best!