Starting Cimzia

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Maya142

Maya142

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Since there are so few kids on Cimzia, I figured I'd start a thread about M's experience. We are really hoping it will help both her Crohn's and AS. Her Crohn's has been flaring since this winter (after getting CDiff) and she has been on steroids for 5 months (and is VERY ready to get off them!).

So we start Cimzia tomorrow. She will get two shots every two weeks for 6 weeks (as a loading dose) and then we will go to shots every 4 weeks. M is a little nervous but mostly excited to feel better and hopefully get off steroids soon!
 
I really hope that Cimzia works well for her and that she can get off steroids quickly. (Five months of steroids--ugh!) Fingers crossed...
 
Good luck to both of you. I love your positive attitude 😊 Keep your eye on the prize and let's hope you can put those steroids behind you. Five months is such a long time.
 
M got her first shots today. She got 2 injections (week 0) and will get 2 more at week 2 and week 4. Then maintenance dosing is 2 shots every 4 weeks.

She says they hurt less than Humira but more than Simponi. No side effects so far. Now we just need Cimzia to work!
 
We are all hoping it will work too! I feel like it will. You do such a good job shepherding her (and her sister) through this ugly maze. It is time for her to catch a break.
 
She is doing ok, so far. We have fewer complaints for belly pain, though she does still have belly pain and diarrhea often.

We also have fewer complaints of SI joint pain, which I am hoping is not just a coincidence.

I think it's too early to tell honestly. She has only had one dose. Next one is a week from today.
 
Cimzia is in trials for polyarticular JIA and is also in trials for pediatric Crohn's (there was a trial at CHOP a year or two ago - not sure if it's still going).

I think many pediatric GIs and pediatric rheumatologists will use it off-label. We know several kids with JIA who have been on it.
 
Has she had the 2nd loading dose yet? How did it go? Is her belly and joint pain still easing up a little?
 
She did have it today! Not really sure if it's doing much yet - it's hard to tell because she is also on steroids (but we are tapering now and she'll be off by next week).

It seems like she is complaining less of belly pain and diarrhea. Joint pain might be decreasing but it's hard to tell.

She gets two shots every time - third loading dose is in two weeks. After that she goes to every 4 weeks.

She says it hurts, but not like Humira. She has to get two shots at once because the volume is too large to be injected in one place (wouldn't absorb well). But it's really not bad, in terms of pain.

We're going to try Buzzy next time.

No reactions at all so far.
 
That all sounds good. I'm sorry that the shots hurt, but I'm glad it's less than the Humira shots. I'm also glad to hear that she's tapering off the steroids--I'm sure she's happy about that. I hope that the taper goes well, and that her pain continues to decrease!
 
M is due for the last loading dose of Cimzia tomorrow. After that, it is two shots every 4 weeks (though we can split the dose and do one shot every two weeks if it doesn't last 4 weeks).

She is doing better :)!! Belly pain is much better, diarrhea is much better, mouth sores are gone! It's only been 4 weeks, I was a little shocked that she has actually responded.

Her joints are a bit better too, but still a work in progress.

Tomorrow we repeat blood work to see if her CRP is down - it was pretty high before we started Cimzia.
 
That is such great news! Is she completely off steroids now? Hope you get good CRP results tomorrow and that her joints start responding more after tomorrow's dose.
 
She is off steroids (finally!!) - but now has Cushing's Syndrome from being on steroids so long. She is being followed by endocrinology.
 
Ugh--as if she's not dealing with enough already! Hope the Cushing's Syndrome resolves quickly now that she's off steroids.
 
Very glad to hear it is helping and so quickly too!!!
That is awful about the Cushing syndrome. I hope it resolves quickly.
 
M got her first maintenance dose of Cimzia. It was the first dose given at 4 weeks (4 weeks after the second loading dose). About 2 weeks in, she began flaring - lots of diarrhea.

So now we will split the dose - instead of doing two shots (400 mg) every 4 weeks, we will do 1 shot (200 mg) every 2 weeks.

Hopefully that will help.
 
Thanks FW, she has so few options left now that we are just hoping it works.

Wanted to add - CRP is still high. It did go down though - it was 16 (range is 0-4) when we started Cimzia and was 8 a month later.

Some of M's joints are much better (elbow, knees, ankles) but she is still struggling a lot with others (jaw, SI joints).

We have to give it 3 months at least. It has been almost 8 weeks.
 
I had TMJ so severe that they ended up having to take part of my jaw bone out. It did fix the problem but I still can't open my jaw the full width.

Is she'd gong to college in the fall?
 
Yes, she will be starting her sophomore year in September.

M has inflammation in her jaw - very common in JIA. She has had steroid injections in her temporomandibular joints before that took care of the inflammation for a while. Her jaw hurts a lot now - she'll be having an MRI next week.

She is not quite to the point where she'd need surgery yet. Hoping to avoid that.
 
I really hope that splitting the dose helps. Is there any possibility of upping the dose if she's still showing symptoms after 3 months, or is she already at the max?
 
We could up it...if insurance agrees! But really hoping we won't have to. She's doing a bit better today - less BMs and no abdominal pain - so fingers crossed!
 
saccharomyces boulardii kills CDiff. You can get it at your health food store. Remove the dairy, sugar, gluten. Start taking probiotics and healthy organic veggies.
 
She's doing ok - we had a mix up with the dosing a couple weeks ago and when she should have gotten 400 mg, she was given half a dose (200 mg). So this Friday (when the official split dosing was supposed to start), she was given a double dose instead.

Now we are on the right dosing - she will get 200 mg every two weeks.

Her Crohn's has improved definitely - less diarrhea. Her arthritis seems to be very, very slowly improving (we think -- maybe...). So fingers are crossed!

M has figured out that the shots hurt a lot less in her stomach vs. her thighs. She still says they are nowhere near as bad as Humira, but they do sting.

The nurses says Cimzia is very viscous and hard to push. It feels like a longer shot than the other biologics she's been on (Humira, Simponi etc). But it's not too bad.
 

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