Young Pilgrim on Entocort

[Pilgrim]

We were so fortunate get through two years of this disease before steroids.

She is on her last two weeks of taper now. I noticed HUGE improvement with her bowel movements, appetite, and mostly her energy. I never imagined we could all enjoy hiking and camping together because she could never walk short distances without fatigue. This weekend she hiked over 4K with us. She is riding her little bike around the neighborhood with one of her sisters. She even asks for walks after supper.Swimming for hours in the lake! It's been amazing.

Downsides are a little back acne, some mood swings, and noticeable body hair growth.

Honestly, I think we will miss it. It helped her really live this summer.

Maybe her body will keep it up for awhile after the taper. We are hopeful. Anyway, that's how Entocort went at our house.

 

[ronroush7]

I hope she feels well for many years

 

[Pilgrim]

Thanks Ron. You are so kind.

 

[Maya142]

Glad she has done so well on Entocort! My daughter has been on it for a couple months too -- her only side effect was a puffy face and only at the highest dose (9mg).

Remind me -- what's the next step? Did you make a decision?

Just FYI, if you think Entocort is good, Pred is like magic ! I hope your little one can avoid it since it has so many side effects, but it's always a shock for us -- my kiddo always feels so GOOD on it!

 

[ronroush7]

You are very welcome

 

[Pilgrim]

Maya142, next step was bumping her up to adult dose of Humira which we did at the beginning of steroid course so now we wait to see if Humira can maintain the progress. We're testing fcal to see how much those numbers went down at the end of the steroid course. So, we'll see.

I can't even imagine pred! We took to calling her "Super Steroid Girl" (behind her back) because she could be downright wild on Entocort. Her dose was lower, too, 6mg for a month then 3mg taper.

 

[Maya142]

Fingers and toes are crossed for you! Glad you had room to up the Humira dose.

 

[my little penguin]

Hope the higher dose humira helps
Fingers crossed for the fecal cal

 

[Pilgrim]

I spoke to GI and he wants me to wait two weeks for the Budesonide to clear her system before fcal so we're waiting until end of month for that.

Question: she is really tired today, napped after school and then went to bed at 7 for the night. We are about a week past stopping Budesonide. Is the magic gone already?

 

[Maya142]

Have they tested her iron levels recently? My daughter was like that - totally exhausted - and her Ferritin was so low she ended up needing iron infusions.

Of course, other times, it has just been disease activity.

It may be that you need to give Humira more time to work at the higher dose...or it may be that you need to add something else. The FC will give you more info. If it's still sky high they might want to add MTX or even switch drugs completely .

 

[ronroush7]

I spoke to GI and he wants me to wait two weeks for the Budesonide to clear her system before fcal so we're waiting until end of month for that.

Question: she is really tired today, napped after school and then went to bed at 7 for the night. We are about a week past stopping Budesonide. Is the magic gone already?

It might be. Maybe you should call her doctor tomorrow.

 

[Pilgrim]

We've had about 3 months on the higher Humira dose, started in July. So maybe we need a few more months.
HGB and ferritin run in August and weren't flagged. She had been low before for many months but improved last spring.
I guess we wait. She'll have labs done not too long after the fcal.
Thanks, Maya. An empathetic ear does the heart good.

 

[Pilgrim]

It might be. Maybe you should call her doctor tomorrow.

Thanks Ron. I will probably wait a week to see if she gets a cold or something normal before I call. Sometimes she hits a little mini flare if she's got a virus. Hoping for a runny nose!

 

[ronroush7]

Thanks Ron. I will probably wait a week to see if she gets a cold or something normal before I call. Sometimes she hits a little mini flare if she's got a virus. Hoping for a runny nose!

Hoping the best.

 

[Maya142]

Your poor kiddo. It's hard to see them act "normal" on steroids and then go back to being tired off steroids. We go through that every time.

I hope they are able to get her to feeling better soon. Given how high her FC was, I'm guessing it's inflammation.

The other thing that always gets us is calories -- if she's not feeling well, she eats less and then of course feels worse. That might be something to look at (and a relatively easy fix).

But we can always hope for a virus! Fingers crossed !

 

[my little penguin]

I would think inflammation as well
We have upped humira multiple times to increase the "dose" by first going from kiddie to adult then frequency
Typically after 6-7 weeks we see a huge difference
So I would think it was the steriod doing all the work and humira not much even after three months
Could be a virus ( school just started for her and crude tends to take longer to get over for Ibd kids )
Hopefully the fecal will give you answers and a clearer path forward

 

[Cat-a-Tonic]

I just want to give you some hope on the "it's just a virus" front - I'm on pred myself right now, and steroids (whether entocort or pred) always wreck my immune system and I catch every cold and virus going. I caught a cold on Monday and it seriously impacted my energy levels. So hopefully it's just a virus for your daughter as well!

As Maya said, iron deficiency can also cause massive fatigue. I have been there & done that too - I had 3 iron infusions last year (I was losing a lot of blood due to rectal bleeding). The fatigue was horrendous before my infusions, I felt like a zombie. Sometimes I'd go home sick from work, sleep for 3 or 4 hours, and wake up somehow feeling even more tired. It was like I could have slept 24 hours a day and still not felt like I was caught up on my sleep. So that's a possibility as well.

And, if I can give you a bit more hope - the first time I was on Entocort, it put me into remission and I stayed there for 2 years. (I only fell out of remission because I was taking Asacol for maintenance, and then the manufacturer stopped making regular Asacol, and my body couldn't break down those giant tablets that are Asacol HD.) Those were the 2 best years I've had in the 7 years that I've had this illness. I hope your daughter can have a nice long remission as well!

 

[Pilgrim]

So we learned that her fcal is now around 1500. In my head I was really happy because it's a huge improvement. But our IBD nurse sounded apologetic.
We see the GI early next month to see what his plan is.
Doesn't it take a very long time for fcal to drop? I wonder if it's just needing more time to settle?

 

[my little penguin]

Only three months should bring it back to normal
1500 is still full flare from what we have been told
Good luck

 

[Pilgrim]

It's down from around 3500 so a drop of over 2000. But yes, still very high. She's been asymptomatic though so I'm going to find it hard to deal with med change or addition.

 

[Maya142]

Glad it's down a bit but that's still really high . Hope they can figure something out soon.

 

[Pilgrim]

Thanks. I have no idea what our current options are.