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Simponi for M

Maya142

Maya142

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Staff member
I wanted to start a new thread since there are so few kids on Simponi. M will be starting Simponi today. It was prescribed mostly because high dose Remicade just wasn't controlling the AS - M has had many many sleepless nights because of pain in the last few months.

Her IBD seems to be mostly under control, though she did have a week of bloody BMs a few weeks ago and has abdominal pain (LRQ) on and off. Her GI wanted to scope her before we switched but M begged because she's sick of tests (6 MRI's, 1 SBFT, 1 gastric emptying test, 1 upper endoscopy all in the last few months) so she agreed to scope her in the summer instead.

She is doing a loading dose today (2 shots) and then will do one shot every 2 weeks, which is much higher than the regular dose I believe. I think her rheumatologist plans to space them out once she's doing well.

Really hoping this will be her magic drug.
 
Farmwife

Farmwife

I hope this works for M and she's back to herself very soon.

I know I'll be watching this thread with great interest as Grace doesn't seem to be responding to Remicade as much anymore.
 
FrozenGirl

FrozenGirl

My infusion center for Remicade also teaches people to inject Simponi and I have heard lots of good things about it, the big on being very few side effects. That is a higher than usual dose ( once a month after loading is usual) but from people I have talked to it doesn't sting or burn going in. Are you doing the pen or the syringe? Hopefully it will be awesome for her!
 
Maya142

Maya142

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Staff member
Pen for M (she will be going to college next fall and wanted the pen so it will be easier to do her own shots).

I think the high dose is because she has failed Enbrel (before IBD diagnosis), Humira (twice) and Remicade (three times, including 20 mg/kg high dose Remicade). She will remain on Imuran.
 
SupportiveMom

SupportiveMom

D has no complaints for Simponi. she has no side effects afterwards either. Sorry you had to switch biologics but glad to see another kid on simponi! I am hoping she can stay on it after surgery, but based on our last appointment Tuesday doc is pushing Entyvio now. We know what to expect with Simponi and is so much easier for her to do on her own. I like the fact we don't even have to ice the area beforehand, just take it and do it!
 
Maya142

Maya142

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Simponi is so convenient SupportiveMom! M can definitely do it by herself in college - she really likes that. No side effects at all so far, but we weren't really expecting any.

I hope your daughter can stay on Simponi - the fact that she had some response even if just for four months is promising isn't it? Whatever they put her on, I really hope they can find something to help her :ghug:.
 
SupportiveMom

SupportiveMom

I think the doc is thinking after surgery try something new to Kickstart remission. I worry addING one more drug means she's out of meds to try. I want to hear why the doc wants to switch after our surgery consult & if the surgeon agrees. Otherwise I want to stick with Simponi!
 
Maya142

Maya142

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Staff member
M's fecal calprotectin (done before she started Simponi) came back. It was 257 - not terribly high but considering she's had one at 36, really hoping the Simponi will work for the IBD as well as for her joints.

So far no improvement, but it hasn't even been two weeks so we're just waiting...
 
Maya142

Maya142

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Staff member
Yes, Imuran too for M. We are trying to raise the dose but haven't been able to yet because we've been so busy dealing with her arthritis, gastroparesis and weight loss.
 
izzi'smom

izzi'smom

Just adding that izzi has been on simponi as well. We are at every three weeks with a slight improvement in crp and pain. (initial improvement after loading dose was drastic). She is also on tacrolimus. :)
 
kimmidwife

kimmidwife

Be interested to see how they do on Simponi. Our doctor is not a big fan of it which is why she didn't even consider it.
 
Maya142

Maya142

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Staff member
Our GI doesn't like Cimzia at all, and it was between that and Simponi. Incidentally, her rheumatologist isn't a big fan of Cimzia either.
 
SupportiveMom

SupportiveMom

I know one other kid on Simponi at SickKids hospital and he is doing very well on Simponi. He is the only person I know on the drug besides those here on the forum. He has had a resection, and ever since the drug does even better for him I am told by his mom.

To touch base on the dosage, D also takes it every other week. It is standard dosage for those with UC so I think that is why it is the same dosage for Crohn's. See the link here: http://www.simponi.com/ulcerative-colitis/about/treatment-frequency
 
Maya142

Maya142

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Staff member
Just got M's iron studies back and they are weird:

Name Value Reference Range
Iron Bind.Cap.(TIBC) 287 250-450 ug/dL
UIBC 110 (L) 150-375 ug/dL
Iron, Serum 177 (H) 35-155 ug/dL
Iron Saturation 62 (H) 15-55 %

Ferritin, Serum 187(H) 15-150 ng/mL

She is not taking iron supplements - just a multivitamin with some iron in it. Her iron studies are generally normal (except Ferritin is high due to inflammation usually).
 
Catherine

Catherine

Moderator
I would be looking at getting a multi vitamin without iron.

What are her folate and B12 level? How her haemoglobin level?
 
Maya142

Maya142

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Staff member
Hemoglobin was 11.2. Folate and B12 weren't done. I think you're right Catherine, I am waiting to hear from her hematologist about it.
 
Catherine

Catherine

Moderator
Getting her b12 and folate up to top end of the ranges may help her hemoglobin level. Iron won't help less she has IDA.
 
Maya142

Maya142

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Staff member
Joints do seem better but she is also on Medrol, so I don't know if it's the Medrol or Simponi. She has had diarrhea and urgency (many accidents) for the last few weeks, so wondering if there is something IBD related going on.

MLP you need to clear your inbox - can't send you a PM until you do!
 
Mr chicken

Mr chicken

I have to post 10 posts since I am new
Only get two messages
Yeah I know very Grrr at the moment. :voodoo:

Since everything is locked out. :stinks:

Can't do anything
 
C

crohnsinct

Well-known member
Maya - where does her FC sit normally? Is the 257 elevated for her? I know T's GI isn't jumping out of his skin yet with that same number BUT he is carefully watching it and if it repeats that high I suspect we will be reassessing the situation.
 
Maya142

Maya142

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Staff member
Her FC was as low as 26 (0r maybe 36, can't remember) when she was doing well on Remicade. Her Imuran dose has been increased quite recently and levels will be checked soon. I'm hoping between that and the Simponi, something will take care of the urgency and diarrhea very soon. If not, I'll ask them to repeat FC.

Honestly, we've been so busy dealing with the gastroparesis and her AS, that her IBD has sort of gotten ignored!
 
C

crohnsinct

Well-known member
Oh man! Quite a juggling act you have going on there. Hoping right along side you that the increase sorts things out quickly!
 
Maya142

Maya142

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Staff member
Wanted to update M's thread. M has gained nearly 20 lbs with the NJ tube. She will be getting a GJ tube soon since she can't really maintain her weight without the extra calories from formula.

The BEST news is that her FC came back 28 (<50 is normal at this lab) today!!! So Simponi is definitely doing something for her gut! I don't know if the supplemental EN has anything to do with, but she's going to stay on it for a while anyway.

Some of her joints are better but others are still pretty painful, so the AS is still a work in progress.
 
Farmwife

Farmwife

I'm so glad for the weight gain and low fc.
Grace's gtube has been a blessing to us.
I hope it works well for her!
 
Maya142

Maya142

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Staff member
Thanks FW. Do you remember how long it took for Grace to recover? M is quite nervous about the GJ tube.
 
Tesscorm

Tesscorm

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Staff member
That's great weight gain!! :D And glad the FC is down!! :D

I hope the GJ tube isn't a difficult transition... Wish she didn't have to deal with this too. :ghug:
 
Farmwife

Farmwife

If I remember correctly... which I may not.:ybiggrin:
By day 3 she was up and running,
By one month all was healed.
Our DME supplied all her bandages and tapes.
Split gauze will be your new friend. At first we doubled the gauze around the tube so it didn't wiggle around and hurt her. As it healed we just stopped doubling.
Also remember to change the bandages frequently. The drainage can sick to bandage and skin.:ack:
Grace did get cellutitis a month in. Make sure to get her to the doc ASAP, if this happens.

Do you know what type of button (mickey or AMT).

Hers will be going passed the stomach, right?
 
Maya142

Maya142

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Staff member
Yes, hers is a GJ so there will be a G port and J port (which we will use for feeds).
Glad it only took Grace a few days! That will definitely make M feel better.

We don't know what type of button yet - we have the consult with interventional radiology next week and then we'll know more.
 
pdx

pdx

Thanks for the update! It's great to hear about both the weight gain and the low FC. Hope the consult goes well next week.
 
kimmidwife

kimmidwife

Glad to hear the news that is excellent!
Hopefully the tube transition will go easily.
Glad the simponi really seemed to be working that is excellent news!
 
A

awmom

What good news and relief for both of you that the Simponi is working!!! I hope the GJ procedure goes well and the healing is swift and that she has a great fall semester.
 
SupportiveMom

SupportiveMom

Simponi can be such a good med. Still if I have to pick favorites that would have to be it. So glad its working!

Looks like we are going off it. Waiting (still!) for pathology but doc wants her off biologic & she's been off it since surgery. Now what to do with 2 unopened boxes. Going to my chapter meeting next month to see who can take it. Pharmacy won't take them back, just destroy it. Lesson learned to only order what you have to!
 
Maya142

Maya142

Moderator
Staff member
What will D be on SupportiveMom? Entyvio? Too bad you had to give up Simponi - definitely our favorite biologic too!
 
DustyKat

DustyKat

Super Moderator
Thanks for the update Maya. :)

Fabulous to hear that the gut is responding so well! :dusty:

Sorry to hear the AS isn’t settling as well though. :(

Everything crossed that M will soon have brilliant outcomes for both, bless her. :ghug:

Dusty. xxx
 
Maya142

Maya142

Moderator
Staff member
Simponi shots are not at all painful according to M. We use the pen, and she says they just don't burn like Humira does, they feel like regular shots. We've also tried the syringe and she said those hurt even less (the pens are kind of violent) but Simponi hurts so little anyway, that it is more convenient to use the pen.

For most people, Simponi is also only once a month (100mg a month is the FDA approved dose for Ulcerative Colitis). M gets 200mg per month since her AS is so bad.

No side effects, just like the other biologics :) Overall, a much easier experience than Humira though both worked very well for M.
 
lchele1203

lchele1203

I have been on Simponi for my Crohns the last year and a half and I have not had any flares. My GI would not prescribe it but my arthritis doctor did because it also helps with my arthritis. I have tried Humira and that made things worse. My veins are to bad for Remicade and I just didn't want to go that route. So for now Simponi is working great!
 
Maya142

Maya142

Moderator
Staff member
Update on the GJ Tube surgery:
M's GJ tube was placed on Monday. She was kept in the hospital two days and discharged today. The first day was pretty painful - never realized how much we use our stomach muscles to sit, stand up, go to the bathroom etc. IV Pain meds helped a lot.

The drain was removed the second day and by today she was walking around more easily, though she will still need oral pain meds for a few days.

Unfortunately, the tube retracted on its own (which we were told is very rare) and so is now in the duodenum and not the jejunum. We will go back in ten days for it to be fixed and they will see if we can switch to a button type tube.

Glad we're mostly done with this and have a way to keep M's weight up without fighting about the NJ tube.
 
pdx

pdx

I was just thinking about your daughter today, wondering if she had had the tube placed. I'm glad that the surgery is over, but sorry to hear about the pain and tube retraction. I hope that she is feeling better really soon, and that she is feeling great about not having to use the NJ tube anymore!
 
pdx

pdx

How's your daughter feeling? I hope the pain is gone. Is she able to use the new tube yet, or does it have to heal more first?
 
Maya142

Maya142

Moderator
Staff member
Thanks pdx - she's doing ok. Her new tube still hurts quite a bit . They told us it takes most kids about a week but some recover faster and others slower (I think M is definitely slower!).

We have been doing feeds (at a lower rate) and so far they are going well. Mostly she is just sick of the incision pain, though because she is on pain meds 24/7 she has had a very nice break from the AS related joint pain.
 
Tesscorm

Tesscorm

Moderator
Staff member
Ugh, so sorry that she's still feeling pain!!! I hope the feeds do help her and she begins to recover more quickly!! :ghug:
 
A

awmom

I'm so sorry M is still having pain. I'm thinking classes must have started for her.....will she be able to go? I hope the feedings (even though slower for the time being) are more comfortable for her than with the GJ. Will the fixing of the tube require a surgical procedure? Hoping the worst is over and it's a speedy recovery from here on out!
 
Farmwife

Farmwife

Sorry for the late reply.

How is she now? Has she been able to do the set up and feeds herself?

If she still hurts make sure the drainage is clear(ish) and no smell. We were told that those were signs that an infection was coming or there already.
 
Maya142

Maya142

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Staff member
M is doing ok. Tube is still sore but is getting better every day. Farmwife, there is some blood but no drainage, is that normal? She does still have stitches so it's possible one broke or something.

Feeds are going ok - M keeps turning them pump off because she is sick of being hooked up - teenagers :ybatty:.

The tube is being replaced on Thursday.
 
Maya142

Maya142

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Staff member
awmom - classes start after labor day (late this year!) and M currently wants to go to school and see if she can make it through the semester. She says she still might change her mind though.

The tube change is under sedation but is a pretty simple procedure I've been told.
 
A

awmom

That's good that she has one more week to recuperate before trying school again. She is a brave girl for going for it, and I so hope she succeeds, but I'm glad she is also open to postponing it if she feels the need!! I think for N, although he gets stressed at school, it helps him keep his mind off his ills. The problem is that he doesn't always take good
care of himself.....yup, teenagers....
Sending the best to you and your girl....I hope she is like new by weeks end!
 
Farmwife

Farmwife

Yes Grace had some blood but it didn't last long.
Does she have a home health care nurse?
They are great at answering questions. Grace loved her nurse.
How is the site today? Is m doing all the feeds and cleaning herself?
 
Maya142

Maya142

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Staff member
No home health care nurse yet, we're trying to set it up. Feeds are going ok and M is doing everything by herself for the most part. Still a little bleeding but much less than this weekend, so that's good.

M does still have stitches so I'm guessing it is possible she just ripped one and that caused the blood.
 
Farmwife

Farmwife

Where are the stitches? Grace had two but we're removed before we left the hospital.
The switches were just to hold the tube in place for 24 hours.
 
Maya142

Maya142

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Staff member
Same place - they're holding the tube in place. Since we're taking her in Thursday they will remove them then.
 
Clash

Clash

I don't know how I keep missing this thread! What a trooper M is! I hope the appt goes well this week and she heals quickly! Kids in our state would be thrilled if school started after labor day. Most of the high schools started around the 1st of August! I hope she has a great year!
 
Farmwife

Farmwife

No wonder she hurts. That's what hurt Grace in the hospital. I think the surgeon made them to tight. Once he took them out Grace instantly said that was better.
I'm surprised there still in for M but it sounds like your girl has a different tube, so that's probably why.
 
Maya142

Maya142

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Staff member
You know Farmwife, that's exactly what the surgeon said - that kids say once the stitches are gone, they feel much better. I don't know why they needed to be in so long, but regardless, they'll be gone Thursday.

Hoping that'll make a big difference since she's still quite sore getting up, lying on her side and bending. If she's still, her tube doesn't hurt at all, it's mostly changing positions that's an issue.

Clash - can't believe schools start so early where you are!! Does school still get out in mid-June or is it earlier?
 
Clash

Clash

No classes get out mid to late May depending on how each school arranges their breaks.

It wasn't this way when I was in school but a large majority of the state has moved to this schedule.

Since our state was mostly rural for years, our school start dates fell with the end of harvest season of tobacco, cotton...yada yada yada but not anymore.
 
Maya142

Maya142

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Staff member
She did! She was very nervous about awake for the procedure (they were going to give her sedation but she wouldn't be totally asleep like for other procedures) but her first question when she came out was "When are they going to do it, Mom?"

I guess the sedation worked a little too well because she had no memory of any of it (which we're very glad of)!!

The tube looks great - no infection (even though we had some yellow drainage last night - yuck). She now has a low profile MicKey button which doesn't show at all under her clothes, which she loves. We can start using it tomorrow for feeds.

She's a bit sore but not in too much pain. They told us it takes six full weeks for the tract to form so we have to be patient (not one of my strengths).

Now all we have to do is get her ready for school in three days!
 
pdx

pdx

That all sounds great. I'm glad the sedation worked so well, and that she has the MicKey button now. I hope that school goes really well for her!
 
A

awmom

Im so glad the procedure went so well!!!! Hoping for many happy days to come! All the best staring back at school again.
 
Maya142

Maya142

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Staff member
M is doing well today - she slept a LOT last night (12 hours!!) and I'm guessing that made a big difference. Tube site still looks great though it's leaking this goopy stuff. We'll try doing her feeds in the evening.

Now we have to get her ready for school in two days!
 
Greeko

Greeko

I know someone that is taking Simponi and it's working great for him, When I asked my GI about it he looked at me weird and said it wouldn't work and is meant more for colitis patients. Sometimes I feel these doctors are morons!!! Maybe it's time for me to move onto the 3rd GI.
 
Maya142

Maya142

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Staff member
It is typically used for UC and I will say that my daughter is her GI's first patient on Simponi -- even though we go to a large Children's Hospital which has a big IBD center. We mostly chose Simponi because M's AS is worse than her Crohn's and neither her rheumatologist nor her GI like Cimzia.
 
Maya142

Maya142

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Staff member
M is doing ok. She's had lots of ups and downs this week. She loves her classes which is great, but is struggling with pain and sleep. Lots of joint pain (darn rain!) and also pain around the tube.

And to top it all off she's had trouble doing feeds either because of the painful tube site or the lines getting tangled and then the pump going off all night, so she's not even getting all the calories she needs :(

We see her GI next week and I'm really glad because I'm worried the tube site might be getting infected (although she says it looks fine).
 
Pilgrim

Pilgrim

Man, that is a lot for a kid to deal with all at once. I hope the tube site gets sorted out so that she can get the sleep and calories she needs.
 
pdx

pdx

That's great that she loves her classes, but the rest sounds really hard. Hopefully she can get some rest this weekend, and I hope things get better for her soon.
 
Maya142

Maya142

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Staff member
The tube is infected :( so now she's on Keflex for 10 days and we're desperately hoping she won't get CDiff. That explains why it still hurts.
 
pdx

pdx

Oh no! Well, at least you know why it's been so painful, and hopefully after the antibiotics do their thing, the pain will be totally gone.

We used Culturelle and Florastor and kefir when E was on antibiotics last summer, and she didn't get Cdiff. We started the Florastor while she was still taking the antibiotics, and then started the Culturelle and kefir right when she finished the course. We continued all for about a month after. (She didn't like to swallow the big probiotic pills, so I just poured them out into yogurt for her.)

Fingers crossed!
 
Maya142

Maya142

Moderator
Staff member
Is Floraster over the counter pdx? We're using Culturelle right now, but M's GI did suggest probiotics (actually she suggested yogurt, but M is lactose intolerant and especially doesn't tolerate yogurt so that's not an option).

Also considering asking for VSL#3 though it doesn't really suit M (causes bloating).

Also doing the anti-CDiff dance ;) it was successful last time she was on antibiotics!
 
Tesscorm

Tesscorm

Moderator
Staff member
Ugh, so sorry she's had such a rough start with the tube! I hope the abx resolve the infection and everything then runs more smoothly for her! :ghug: :ghug:
 
pdx

pdx

Yes, Florastor is over the counter. It's saccharomyces boulardii, and we used a generic drugstore equivalent. It's a yeast, and thus not killed by antibiotics, so it's helpful even while you're taking the antibiotics.
 
Mehita

Mehita

I think I read somewhere that sometimes Florastor increases yeast infections in girls/women? Does that ring any bells with anyone?
 
A

awmom

Oh no!!!! I'm so sorry M is having to deal with this!!! N took Florastore when he was on antibiotics for about 6 months. It is over the counter and you can probably pick it up at any pharmacy. We ordered it online also and it was a bit cheaper. I hope it heals fast going forward.
 
pdx

pdx

I just did a quick search, and while I didn't find anything about increased yeast infections with Florastor--I think that's a different type of yeast--I did see that you have to be careful of fungal infections if you have a central line, and that S. boulardii isn't recommended for severely immunocompromised patients. Since your daughter has a lot going on medically right now, it does sound like it's worth more research.
 
Maya142

Maya142

Moderator
Staff member
i'm going to check with her GI, thanks everyone. I think it'll be fine - I don't think M is severely immunocompromised and it seems like a mild infection (and a GJ tube isn't as dangerous as a central line), but better safe than sorry.

I didn't find anything about yeast infections when I researched it, so glad about that!!
 
Maya142

Maya142

Moderator
Staff member
Wanted to update - M was on antibiotics for a grand total of 4 days before they caused diarrhea. Her GI stopped them and ordered stool tests (CDiff and FC, among others). The discharge from the tube came back so now we're going to do a CT scan tomorrow.

M is completely exhausted and still is trying to make school work. The tube site is painful and her joints aren't doing so well. She absolutely LOVES her classes, so she really wants to get through the semester.
 
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