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Ustekinumab or tofacitinib positives and negatives

Hi looking for an opinion about 2 drugs, side effects like was muscle/joint pains, and how effective are they?
Dr wants me on Ustekinumab or tofacitinib as current drugs, adalimumab, and azathioprine, are not working, but I also got Rheumatoid arthritis /seronegative arthritis and do not want to make this worse and the side effects say under the common ones headaches and joint pain.
 

my little penguin

Moderator
Staff member
Where is your crohns located ?
What are you taking for your arthritis?
My kiddo has crohns and juvenile spondyloarthritis (seronegative )
He was on humira plus mtx for slightly over 5 years and then started Stelara plus mtx in Aug 2017

He had migraines on and off while on humira
He has not had migraines on Stelara.
He does need to take Stelara at every 4 weeks plus mtx to keep both his crohns and JSpA under control
Every 8 weeks at 90 mg really didn’t fix his crohns or arthritis
Jak inhibitors have a better track record with UC than crohns (they don’t touch the terminal ileum)
Stelara does better at the terminal ileum and small intestine but doesn’t do as well in the large intestine

My kiddo has done well on Stelara so far as long as it’s every 4 weeks
Tried every 6 weeks once
Disaster

Fwiw his arthritis is much worse than his crohns
 

crohnsinct

Well-known member
Yeah. Disease location matters. My daughter has mild TI disease but raging colonic disease. So after failing Remicade, Mtx, Humira, Entyvio and sulfasalazine she went to Tofa. It is a pretty well used drug in the rheumatology world.

She started it about three weeks ago. No side effects yet. Seems like maybe it is doing something for her Crohn’s but she started it right after Entyvio infusion and Humira shot so we are waiting for those to completely wash out before judging.
 
Location
San Diego
Hi looking for an opinion about 2 drugs, side effects like was muscle/joint pains, and how effective are they?
Dr wants me on Ustekinumab or tofacitinib as current drugs, adalimumab, and azathioprine, are not working, but I also got Rheumatoid arthritis /seronegative arthritis and do not want to make this worse and the side effects say under the common ones headaches and joint pain.
Do you have Crohn's or UC? Are you located in the US? Because tofacitinib is not yet approved in the US for treatment of Crohn's, which means that recommended dosing and other details of its use in the US for Crohn's have not been determined yet. Any use in the US for Crohn's would be "off label."

For years there has been a lot of interest around the use of JAK inhibitors (such as tofa) for IBD. I've had great hopes for them myself. And some have been approved for UC. But FDA has slowed down further approvals amid mounting data showing significantly increased risk of serious cardiac problems compared to the biologics. Cardiac warnings have been added to the "black box" warning labels.
 
Do you have Crohn's or UC? Are you located in the US? Because tofacitinib is not yet approved in the US for treatment of Crohn's, which means that recommended dosing and other details of its use in the US for Crohn's have not been determined yet. Any use in the US for Crohn's would be "off label."

For years there has been a lot of interest around the use of JAK inhibitors (such as tofa) for IBD. I've had great hopes for them myself. And some have been approved for UC. But FDA has slowed down further approvals amid mounting data showing significantly increased risk of serious cardiac problems compared to the biologics. Cardiac warnings have been added to the "black box" warning labels.
I am in the UK, the used to think it was chrons and other was inflammation in the upper region before it now only in the lower and at the moment apparently, it is uc.
i am looking for opinions and experiences from users, my adalimumab keeps my seronegative arthritis in control, but not my colitis, but I can not risk stopping adalimumab just in case there is a flare-up with my my seronegative arthritis that causes me before adalimumab so many problems, i could not even walk or lift 15 kg in back of our car from shopping, so can not afford to get worse again on that front
☹
 

my little penguin

Moderator
Staff member
Do you have spinal involvement in your arthritis?
Anti tnf such as humira treats the spine and peripheral joints (hands knees etc)
Stelara did not do well with spinal arthritis
It does ok with peripheral joints at high doses

Rinvoc does well with spinal arthritis and is in trials for the colon in the US -has less side effects in terms of blood clots etc versus other JAK inhibitors including tofa

Other anti tnf would be simponi aria (used in UC and juvenile arthritis)
 

crohnsinct

Well-known member
O.K. wait. If you used to have upper. tract involvement and now that area is calm it doesn't necessarily mean the disease isn't there but could just mean that the Humira is working in that area but just not the colon.

It is true that Tofa is off label for Crohn's disease here in the U.S., my daughter's GI actually changed her dx to UC to be able to get it for her because her Crohn's behaves much more like U.C. It hasn't been approved for use in Crohn's due to the abysmal success rate but that includes small bowel disease. If you just look at colonic disease it does a bit better but still not great.

Here in the U.S. you can sometimes combine biologics. My daughter has combined Humira for her small bowel disease and Entyvio (which works well for the colon but not so great for the small bowel) for her colon. However, combining biologics right now with Tofa is a big no no due to the safety profile.

Perhaps you could combine Humira and Entyvio?
 
O.K. wait. If you used to have upper. tract involvement and now that area is calm it doesn't necessarily mean the disease isn't there but could just mean that the Humira is working in that area but just not the colon.

It is true that Tofa is off label for Crohn's disease here in the U.S., my daughter's GI actually changed her dx to UC to be able to get it for her because her Crohn's behaves much more like U.C. It hasn't been approved for use in Crohn's due to the abysmal success rate but that includes small bowel disease. If you just look at colonic disease it does a bit better but still not great.

Here in the U.S. you can sometimes combine biologics. My daughter has combined Humira for her small bowel disease and Entyvio (which works well for the colon but not so great for the small bowel) for her colon. However, combining biologics right now with Tofa is a big no no due to the safety profile.

Perhaps you could combine Humira and Entyvio?
That is what I was thinking, Crohn's is in remission or controlled, so do not want to mess. Thanks for the tip re combination. As to
my little penguin , yes the spine is the main area, Ankylosing spondylitis, a bit of a handful to write lol.
 
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