Stelara advice/opinions

[Cronie1]

Hi everyone.

I’ve been having a really bad crohns flare since August and been on prednisone ever since. Been on Humira prior to this, but lost response, tried infliximab but had no response and just had my first IV of Stelara on Monday past. Had bad stomach pains for about 3 days after the infusion and serious fatigue which is continuing. Considering increasing prednisone again to 35mg as my abdominal pains seem to be more frequent, even though I’m mostly on a liquid diet.

My query is how long does Stelara normally take to work? I’m getting a lot of pressure to be back at work obviously and soon will have no income but really I’m as bad as what I was in August, only the steroids are taking the edge off the pain a bit.

Thanks.

 

[Merv S]

Commenced Stelara approximately a year ago. The current regime is 90 mg 2/12.It took about 6 months after the initial infusion to be effective. The only symptom that I noticed was was marked tiredness, but is something that one can adjust to.

At one stage I thought that Stelara was perhaps the cause of mouth ulcers, but after a bit more research this was attributed to another medication I was prescribed for another problem.

I sincerely hope that Stelara does improve you life even if you have to be a bit more patient. While it does not completely stop diarrhoea, it has made my life much more manageable, How long that will last , I really don't know however I am looking at a glass half full rather than the opposite!

Good Luck.
M

 

[my little penguin]

Ds started Stelara in August 2017
At 90 mg every 8 weeks
Stayed on steroids till the end of Dec 2017
Scopes showed inflammation in Jan 2018
Increased dose to every 4 weeks in March 2018(insurance took a while to approve )
Back to “normal “ by May 2018

Stelara takes every bit of 6-8 months to work

When you say liquid diet do you mean exclusive enteral nutrition (EEN - formula only like ensure /boost /peptamen) or just soups etc??

Een is as effective as steroids when used as formula only
Ds drinks neocate jr (amino acid based elemental formula )
He increased the amount he drinks when started Stelara
But has done een for 6-8 weeks many times before
Just not this time since Stelara was needed for his arthritis as well so oral steroids in till it kicked in
Be patient
Takes time

 

[Cronie1]

Hi mlp. It’s a bit disappointing to hear it’s going to take so long, especially when I’m being forced back to work in 3 weeks. I’ve been doing Modulen on and off for the past 5 months and on two occurrences prior to that for 12 weeks and 8 weeks last year. I feel like I’m never going to be able to eat again

 

[Merv S]

Hi C1,
The consensus of opinion is that 6 months is the projected time for Stelara to be fully effective. However, individually we all have the propensity to react differently to medications. Therefore it is possible that you may experience beneficial results under that six months time scale. In no way I am attempting to give you false hope, but please be positive. While there are no guarantees that ultimately Stelara will be the answer to all your problems, it is well worth hanging in there.

Have you discussed your predicament with your employer? If not, I suggest that you do . There are many people that live in total ignorance of the limitations that CD can place on an individual.

 

[Cronie1]

Hi merv. Thanks for that. I have discussed and updated my employer on a weekly basis about my health for the past 5 months, however they are of the opinion that I’m not making enough effort to be back in work and not pushing my consultant/nurse enough. When previously off I provided them with an employer guidelines in IBD booklet. One of the senior managers also has crohns but he is on no medication and doesn’t believe in people being off ‘sick’, If you know what I mean. Received a letter today to say they are stopping my pay.

 

[Scipio]

Stelara worked pretty fast for me - within 2 or 3 weeks of my loading dose infusion there was a noticeable decrease in symptoms. As the other responses suggest, your mileage may vary.

 

[Merv S]

Stelara worked pretty fast for me - within 2 or 3 weeks of my loading dose infusion there was a noticeable decrease in symptoms. As the other responses suggest, your mileage may vary.

That's pretty good Scipio!Let's hope C1 has a similar result.
Cheers,
Merv

 

[Cronie1]

Thanks guys for the support. My GI has now referred me for an urgent small bowel MRI and colonoscopy, not sure how I’m supposed to return to work on the anticipated date. I had such a bad reaction with the first scope, was in so much pain even with sedation.