How long does it take Stelara to work?

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Colie

Colie

Joined
Aug 23, 2016
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I got my first infusion of stelara a couple of weeks ago. For those of you who have taken it, how long did it take to see improvements, if any? I saw on the website that it could be anywhere between 3-6 weeks.
 
Colie said:
I got my first infusion of stelara a couple of weeks ago. For those of you who have taken it, how long did it take to see improvements, if any? I saw on the website that it could be anywhere between 3-6 weeks.
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I started taking it in April 2016. I was dealing with a stricture though which is not helped by medication. The stricture was removed in October. I take it for arthritis too and noticed the improvement in arthritis gradually with optimal treatment in September so it did take a few months. The pharmacist told me that it takes longer to get noticeable benefits than anti-tnf. It may have been longer for me as I was quite sick and stressed when I started it. I do feel the best I have in years now though so was worth the wait.
 
I would ask sooner. All the US FDA approvals for treatment of Crohns is to start at 90mg
45 mg isnt enough
I think it's the same in Europe as well
It was just approved this past fall here with the higher recommended dose
 
My crohns was all removed with the surgery in October. Blood tests normal. No signs of any active crohns so my gi doctor recommended waiting until April.
 
My son had definitive benefits by week 8 but likely sooner. His doctor said it works pretty quickly and that benefits improve over time. His SED rate and CRP went down drastically on his bloodwork 8 weeks after his infusion dose of 360mg. He just had his first injection of 90mg a week ago. We were not given the impression that this takes longer than anti-TNF at all. Of course, everyone is unique as we know.
 
I have just had it approved. I am in the UK and we start with an infusion then sub cut injections.
Can I ask if any of you/your children had side effects with the infusion ?
 
Sounds like the same way this is administered in the U.S. My son has had no side effects at all after his initial infusion in January or his first injection in March. Best to you!
 
I had my first injection about a week ago and started tapering off of prednisone and started running 100.7 fever tonight 🙄 How long until I will start seeing some relief that it will work because all other treatments have failed.
 
I have had the infusion end now my first injection. I was very sick when I started it. I noticed some small improvements after the second week of the infusion, I am currently still dealing with diarrhea, but not as much and no blood in stool noted. So for me it has taken a while. I was told it could take up to 15 weeks to get going strong, but that it was worth it. It is difficult as you take the med then have to wait... but so far so good. The wating for it to work is hard as you still feel bad, but worth it when it gets going.
 
I am on week 15 after initial infusion. It seems like it is helping the crohn's. However, my arthritis recently flared, and I am on 12.5mg of prednisone. My doctors are about to switch me to humira due to the arthritis. Anyone have any advice? Should I wait longer?
 
newdiagnosis - I would ask if Stelara has evidence of being less effective in patients who also have arthiritis. I know it is used for Psoriatric Arthritis. Have you had an additional injection at week 8? That is the protocol. Have you had any labs or fecal calprotectin done? If you have seen symptomatic and any positive blood/stool values, I may stick with it and see what the pred does for your arthritis. However, I am not sure if Stelara has any side effects or data that supports it can cause arthiritic flares more than Humira. I know both are used for psoriatic arthritis so it is a good question to ask. Best to you...hope they figure out the right combo for you.
 
Ds has started Stelara in August specifically for his juvenile spondyloarthritis
(JSpA)
His JSpA was flaring on humira
His Crohns has responded quickly to Stelara
His arthritis has taken longer
That said we have seen improvement and he has weaned to 7 mg of pred and will weanmore at the end of the week

Per his rheumo all his joints have improved in terms of swelling
Now the trick will be if they stay down once he weans
Ds also started ivig as a bridge

We were told by rheumo and GI to expect anywhere from 6 weeks to 6 months to be effective

Humira took over 5 months to be effective for ds
After three months I was ready to give up
I am glad we waited
He had over 5 years on the drug still it was stopped for surgery (not Crohns related)
But didn't work for his artthritis when it was restarted

It's a very tough choice either way
 
Indeed these decisions are so tough because the answers are just not black and white. It is very interesting that the drugs do seem to take quite a bit longer for arthritis. My son only has Crohns and adding in another condition I am sure adds a lot more to the decision and the medication balance.
 
Boymama2000
I think in Ds case
His Crohns was only mildly irritated when starting Stelara since he had stayed on een when humira was stopped and restarted
Unfortunately een does nothing for joints/arthritis
So the arthritis flare was pretty bad with lots of inflammation
So that may be why arthritis is taking longer
 
I have had one infusion and one injection 8 weeks later. At this point I am at week 16. I am thinking it might be worth to do the next injection and wait a couple more weeks. I am just worried that I have been on prednisone for around 7 months (low dose, around 7 mg daily). However, even if I switch it will take another few months until humira works. I am thinking it is probably worthwhile to try another shot of stelara since I am only on week 16. I have been able to wean down to 8mg prednisone.
 
Good luck with the next shot

Ds had a few reasonable weeks but is back to arthritis flaring now -5 weeks out from his last shot
His ivig is due this week
He is down to 4 mg of pred
 
I'm getting my loading dose of Stelara in about two weeks (currently on budesonide). I sure hope the stuff works. My routine Crohn's symptoms have always been pretty mild, but I recently ran into some nasty extra-intestinal manifestations. Hence the upgrade to Stelara.
 
My GI doc wants to start me on humira and methotrexate ( to prevent antibodies from forming). However, if they are starting methotrexate I am wondering why not just add methotrexate to the current Stelara. The only reason they are switching me to humira is because my knees are not controlled on stelara alone. However, Stelara seems to control the GI symptoms. Should I just ask my doc to add on methotrexate to the current stelara instead of switching me to humira and methorexate. The methorexate alone should help the knees.
 
newdiagnosis said:
Should I just ask my doc to add on methotrexate to the current stelara instead of switching me to humira and methorexate. The methorexate alone should help the knees.
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It can't hurt to ask. I'd be interested to hear why your doc is not considering adding methotrexate to the Stelara. Is this contraindicated for some reason?
 
Not sure why their not adding methotrexate to stelara. Seems like they think Humira works better for joints. I don't really want to start methotrexate though if they switch over to humira. I feel that mtx has a lot more side effects than humira.
 
Scipio said:
I'm getting my loading dose of Stelara in about two weeks (currently on budesonide). I sure hope the stuff works. My routine Crohn's symptoms have always been pretty mild, but I recently ran into some nasty extra-intestinal manifestations. Hence the upgrade to Stelara.
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Did Stelara work?
 
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Crohn2357
Ds has been on Stelara since August of last year
Once Stelara was increased to every 4 weeks
Seems to be working better
Especially for his arthritis as well as Crohns
He is also on mtx
 
Crohn2357 said:
Did Stelara work?
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Yes, it seems to be working pretty well. And it has worked better and better after the first 3 or so months. The abdominal pain I used to get regularly is now very rare and very mild when I do get it.

No side effects that I have noticed.
 
Scipio said:
Yes, it seems to be working pretty well. And it has worked better and better after the first 3 or so months. The abdominal pain I used to get regularly is now very rare and very mild when I do get it.

No side effects that I have noticed.
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Did your extra-intestinal symptoms improve?
 
It took me over 6 months for Stelara to start working well. My joint symptoms are gone and inflammatory markers are all normal. There was some residual inflammation on MRI, after which I increased Stelara to ever 4 weeks.
 
How long have you been on every 4 weeks? Did they test you for antibodies and Stelara levels before increasing your dose? My son was increased after showing low Stelara levels and no antibodies. 3 months later is fecal calprotectin was lower but not great. We added in an 8 week course of Uceris and kept the every 4 week injections and his FCP was lower than ever - just 23! Now we will wait 3 more months and scope to see if Stelara is doing the trick or if we need to move to something else....probably humira or remicade. I am curious if the increased dose for you worked.
 
My knee swelling started again after I stopped sulfasalazine. I thought that the Stelara was controlling the joints, but apparently not. Really hope the knees improve once I restart the sulfasalazine.
 
It's been 14 weeks since I started treatment (390 mg induction dose, 90 mg maintenance dose every 8 weeks). Feeling pretty good but my anemia is still a problem. I assume this means the Stelara has not yet led to mucosal healing.
 
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Iron stores can take a very long time to get back up even with mucousal healing. Also, my son's GI said that it can take 6-9 months for Stelara to reach its maximum effectiveness so it may be too soon to know if Stelara is doing all that you need!
 
trebor-HI said:
It's been 14 weeks since I started treatment (390 mg induction dose, 90 mg maintenance dose every 8 weeks). Feeling pretty good but my anemia is still a problem. I assume this means the Stelara has not yet led to mucosal healing.
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Are you taking iron tablets or anything else to battle your anemia? If not recovering from the anemia could take a very long time whether Stelara is working or not.
 
I've been taking one Ferrex 150 capsule per day for the past several months. And, I had an iron infusion (injectafer) back in June 2017. My last blood test Hemoglobin was 11.0 g/dl. I'm a runner so I can really tell the difference as my hemoglobin levels decay...
 
Stelara never worked for me but they told me about 4 months.

On the iron subject I just found a MUCH easier solution...transdermal patches! Check out Patchmd.com and get the Iron Plus patch or the Multivitamin Plus. I am alternating between the two bc I thought I was getting some niacin flushing on the Multi, but it could be in my mind.
 
I started a Crohn's study here in my city, I got my IV and injections on January 11th. I did my first at-home injection four days ago. So far, I've felt no difference. I actually feel worse.

The morning after my starting dose of Stelara, I had a yeast infection. It was a side effect and I'm prone to getting infections anyways. I let the doctor's office know and got a script for some medicine right away. The infection cleared up within a week. I started to think I was feeling some signs of relief but I've begun to feel worse. My stomach pain is almost constant, the cramps and bloating are terrible. I've been continuing to lose weight. All the pain makes it so difficult to eat. I know it hasn't been long enough for noticeable improvement but I hope I start feeling a little better soon. I'm going back on steroids for a little while, doctor prescribed them today. I went in for a stomach x-ray, which came back normal. I'm going back in for a CT scan next month to see if things worsen or improve from the steroids.

I've been in bed for four days, exhausted from this disease. I hope the rest of you are having better days. ✨
 
lissabean said:
I started a Crohn's study here in my city, I got my IV and injections on January 11th. I did my first at-home injection four days ago. So far, I've felt no difference. I actually feel worse.

The morning after my starting dose of Stelara, I had a yeast infection. It was a side effect and I'm prone to getting infections anyways. I let the doctor's office know and got a script for some medicine right away. The infection cleared up within a week. I started to think I was feeling some signs of relief but I've begun to feel worse. My stomach pain is almost constant, the cramps and bloating are terrible. I've been continuing to lose weight. All the pain makes it so difficult to eat. I know it hasn't been long enough for noticeable improvement but I hope I start feeling a little better soon. I'm going back on steroids for a little while, doctor prescribed them today. I went in for a stomach x-ray, which came back normal. I'm going back in for a CT scan next month to see if things worsen or improve from the steroids.

I've been in bed for four days, exhausted from this disease. I hope the rest of you are having better days. ✨
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Hugs, exhaustion sucks. I've been a slug today. I was glad to find this thread as I start Stelara in 6ish weeks. This makes me want to pick up a yeast infection kit ahead of time....bummer.

How bad does the injections burn....horrible like Humira or just easy shot pain. Can you shot anywhere and do they allow stomach do you know? Thanks
 
There is virtually no pain with the injections (2x45mg). The easiest sites are on the upper outer quadrant of the thigh, or slightly below the navel line in the abdomen.

I'm not sure how Stelara is marketed in the USA, but here in OZ, we have small
ampoules. It is a little bit fiddly to draw the fluid into the syringe, however, it is important to make sure that you get it all. At the fearful price it is, this is akin to liquid gold!

It a good idea to rotate the injection sites each time you injection is due. It goes without saying wash hands and use alcohol infused swabs!

Happy stabbing,
Merv
 
Merv S said:
.

I'm not sure how Stelara is marketed in the USA, but here in OZ, we have small
ampoules. It is a little bit fiddly to draw the fluid into the syringe, however, it is important to make sure that you get it all. At the fearful price it is, this is akin to liquid gold!
Click to expand...

In the US Stelara for adults usually comes in a single 90 mg dose that is preloaded into a syringe with already attached needle. You just pull off the little rubber sleeve covering the needle and inject. It's simple and easy.
 
That is a much more practical idea. As an old long retired RN, drawing up injectable medication is not a problem, but that said it would be handy to have the prepacked product here.
Cheers,
Merv
 
Feeling Hopeless said:
I had my first injection about a week ago and started tapering off of prednisone and started running 100.7 fever tonight 🙄 How long until I will start seeing some relief that it will work because all other treatments have failed.
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Do you know if your fever was due to tapering off the prednisone or the Stelara? I had the same exact thing happen and I'm nnot sure what it was due to....tapering the prednisone or the Stelara? Thanks!!
 
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Tried Stelara for 5 months without any effect. Hospitalized after that and lost 30kg. So there is a change that It will not work at all.
 
Works for me but I struggle a bit with fatigue in the last 2 weeks of the 8 week cycle. Good luck!
 

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