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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Not sure if Stelara is Working!


09-17-2017, 12:31 PM   #1
newdiagnosis
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Not sure if Stelara is Working!

I started Stelara 8 weeks ago. Short story is that I have bilateral knee swelling and mild/mod terminal ileum inflammation. Only started treating 4-5months ago. I continue to have knee swelling on Stelara. Got a right knee injection last week, which cleared up the swelling, and now the left knee has gotten swollen over the last few days. Not sure what to do, as the stelara doesn't seem to be working for the knees so far. Any thoughts?
09-17-2017, 01:20 PM   #2
ronroush7
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Maybe you should see a rheumatologist.
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09-17-2017, 01:25 PM   #3
my little penguin
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Did you get your first injection of Stelara since it's been 8 weeks at 90 mg ?
Did you get an iv loading dose ?
Did you get iv steriods with the loading dose ?

Are you still on pred till it kicks in?
Volteran gel?
Swimming ?
Ice/heat /knee braces?
Paraffin wax ?

Ds got his loading dose Aug 16 with iv steroids
He is 4.5 weeks out
Still on pred /volteran/swimming daily
Hot /ice multiple times a day /knee ankle and hand braces
Added Celebrex last week (with GI approval since joints were so very bad compared to gut)
Beginning to see very minor joint improvements (not getting worse like he was and maybe a tiny bit better )
Not sure if it's Celebrex/swimming Stelara or combo

But were told 6 weeks to 6 months before they will know if it really works

Honestly it's a waiting game at this point
Which I personally hate
Waiting and watching my kiddo

Those who have done well with Anti tnf meds seem to do better with Stelara
Which is good for Ds

Good luck
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09-17-2017, 02:26 PM   #4
Maya142
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I would honestly wait. We were told Stelara can take up to 6 months to kick in.

In the mean time, like MLP said, I'd ask about Voltaren gel or Celebrex to get the inflammation under control. Some GIs will say absolutely no way to NSAIDs, but it depends on the GI and the case.

Like MLP's son, my daughter has aggressive, severe arthritis but mild Crohn's. She is allowed to be on an NSAID to prevent progression of the arthritis and control stiffness and swelling.

Celebrex or another oral NSAID will be more effective than topical NSAIDs but have more side effects. Also, physical therapy/swimming might help with pain.

Also for pain control, knee braces might help. We use the OTC kind - buy them at Rite Aid or CVS. A TENS unit may also help - a physical therapist can get you on or you can get them online.

Do you still have gut symptoms on Stelara?

It's really, really hard to wait but I wouldn't give up on Stelara too easily. Definitely contact your rheumatologist and tell him/her that your knees are still swollen. He/she can tell you what the next step would be - I would guess you would just have to wait for a while and if in 3 months it's not working, then they may consider increasing the frequency of shots (for example, every 6 weeks instead of 8 weeks).

If it hasn't done anything at all in the next few months, then I would consider an anti-TNF.
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Mom of S (23)
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09-18-2017, 11:27 PM   #5
newdiagnosis
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Thank you Maya142! You always provide very thoughtful and useful advice!!

My rheumatologist seems to think that I should switch over to anti-TNFs. However, I have tolerated the Stelara really well and would prefer not to switch at this point. In the meantime, I am going the route of knee injections. I am currently 8 weeks out from the IV infusion and just did my first subcutaneous injection a few days ago. I am also on oral prednisone 10mg daily for the joint swelling.

My gut symptoms are actually not bad lol. Normal bowel habits, no gut symptoms. Pretty weird how aggressive the arthritis compared to gut sumptoms.

How do you get approval for more frequent dosing? It seems that the recommended dosing regimen is every 8 weeks, and not sure if they would just take the advice of my doctors to increase the regimen.

Maya142 and my little penguin...thank you
09-18-2017, 11:42 PM   #6
Maya142
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Your doctor can make the case for the increased dosing.

I would not worry too much about your arthritis. You've only had 1 subq injection of Stelara (so it's very early) and you only have two joints affected. That is actually a good sign!

Both my girls started out with many more joints affected - the younger one now has arthritis in her SI joints, hips, lumbar spine, knees, heels, ankles, fingers, wrists, elbows, jaw and possibly her cervical spine.

My older daughter has less aggressive arthritis, and she has SI joints, lumbar spine, hips, knees and ankles involved.

It's way too early to tell with Stelara - I wouldn't give up yet. We were told at least 3 months and up to 6 months. I would wait until you've done a few more doses and see what happens. Then if it doesn't work at all, I would consider an anti-TNF.

Since there are so few biologics, you don't want to go through your options too quickly.

The knee injections should help with the swelling and inflammation in your knees while you are waiting. They really worked like magic for both my daughters.

I know Stelara is technically only approved to be given every 8 weeks, but doctors can often play with the frequency/dose.

For example, Humira is normally given biweekly, but we were able to give it weekly and then every 6 days. Simponi is given every 4 weeks - we got it approved for every 2 weeks because my younger daughter's arthritis is so aggressive.

I have also seen on the forum that some people are taking it every 4 or 6 weeks for their Crohn's. With your case it will be harder - because it's your arthritis that is flaring and not the Crohn's. But it may still be possible - it may just take some fighting with insurance.

As for Pred - some people see huge improvements at 10 mg. My girls don't - both really need at least 15 mg Pred or even 20 mg to make a big difference to their arthritis. But everyone is different - there are some people who respond well to 5 mg.

Good luck!
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