Thoughts on stelara or entyvio?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Is she still on steroids? My daughter bruises a lot on steroids, even on low doses. She never remembers where the bruises are from either.
 
Mr. Chicken,
We just noticed it. She has a GI appt on Friday. We will mention it then. She last had blood work right before we started the methotrexate.
 
Do you see any that are coming up to the surface ( small blueish dots ( ranging in size from a dime at a quarter size))?
 
No, I was thinking Erythema Nodosum (EN).
Grace's resemble bruises more than raised lumps like some get.
 
FW,
I thought of those as well. She only has one that looks possibly like an EN. I am keeping an eye on it.
 
Saw the new doctor in the practice today. He seems pretty nice. He is not sure what is causing the shaking or the bruising but he ordered a bunch of lab tests and a fecal calp. Just to see how it measures.
Got a question for you'all,
Fissures what is the best way to heal them?
 
Fourth entyvio this week. Not sure if the entyvio or the methotrexate is what is working but one of them seems to be helping. Fingers triple crossed for it to continue.
 
Really wonderful news :dance::dance::dance:!! That made my day!
Fingers and toes crossed for you.
 
The infusion went great today. The nurse was wonderful and all went smoothly until the doctor came to see us.
Caitlyn's regular doctor is away and so one of his partners came to see her for a couple of issues she is having. She started having severe pain in her behind the past few days so we wanted him to check it.
I forgot how much we can't stand this guy. He barley spoke with is just said the infusion will help and left. We were so mad as soon as her infusion was over we went to the office which is across the street. I told the nurse what happened and she basically gave me a look telling me she knows and agrees that he is a jerk. She got CAitlyn in to see the physician assistant. He doesn't think it is an access or fistula. He wants her to try canasta suppositories for a few days and see if it helps. We were also having an issue with her methotrexate with the syringes they gave us, they gave us insulin syringes and the needle is to small so he wrote for new syringes for her.
 
Glad it went well (besides the awful doc)! Hope the canasa helps Caitlyn.
 
Gosh Kim you were awesome advocate for your daughter and she got what was necessary!!! It seems more and more we are having to do this and it's good for the kids to learn early on. I hope the she feels better with the suppositories and that the infusion continues to help. I never asked you how her trip went in January?!
 
Any improvement with suppositories and infusion Kim? I hope Caitlyn is feeling better
 
Caitlyn is off to camp! This is the first year we have dropped her off. Usually she flies up with other campers. It was amazing to see how they welcome the kids. What an amazing camp! It is a camp for kids with any chronic illness. She absolutely loves it. Her counselor is amazing too. She was her junior counselor last year and this year is her full counselor and she loves her. They stayed in touch all year and have been planning for camp.
 
That is wonderful!!! What a great experience to have> And the knowledge for you that she is at camp where her health is taken into consideration has to give a sense of security and relief. Hope she enjoys to the max!
 
That's so cool that she has such a great relationship with her counselor. Hope she has a wonderful time again this year.
 
Caitlyn is back from camp. She had an amazing time. She has been totally off prednisone now for two weeks and we are seeing a return of symptoms. She started having stomach pain again, bad nausea, and odd swelling on the middle joint of both her pointer fingers and her pinky toe. As well as other odd red spots.
Has anyone else had this?
She has occasionally had swelling of that joint on her finger before but never to this extent and never on both hands.
I am upset as I thought the methotrexate should have been working by now. She started it the end of April. 😓
 
C's rheumatologist just pointed out the swelling in joints of two of C's fingers. The swelling in the other finger joint has gone since last visit. She felt that the increased dose of mtx and the time now that humira has had to work were the cause for the improvement (one joint swelling improved, other joints still have some swelling but C is not having pain since increased mtx dose). The span of the increased dose was from the first of April til now.

She said she didn't think it was the effect of one or the other but the combined effort of increased mtx dose and time for humira to reach therapeutic levels (in April he had only been on humira a lil over a month and half maybe)

Could the mtx dose be increased?
 
Well, I hope the doc can quickly find something that will help. The hurry up and wait kills me when my kid is in pain.
 
What dose of MTX is she on? Does Caitlyn see a rheumatologist? I know good pediatric rheumatologists are VERY hard to find but it's worth it!

Glad she had a good time at camp.
 
Maya,
We were not able to find a ped one but she can see an adult one possibly. I am going to start looking into it.
 
Hugs Kim.:hug:
Grace started with toes. You want to make sure to get it under control if it's arthritis.
Trust me it can cause havoc if not treated in time.:(
 
Thanks FW? I am going to start looking for a rheumatologist for her. We will have to look for an adult one. The peds one we saw was terrible and it took six months to see him.
 
An adult one should be fine, as long as you can find a good one. In our experience, pediatric rheumatologists seem to treat more aggressively than adult ones, but since Caitlyn is already on meds like MTX, it shouldn't be an issue.

I agree with FW, if it's arthritis you want it treated ASAP. We did not treat M aggressively enough and are really paying for it.
 
My jury is still out on the entyvio. Our doctor said give it six months to a year. We are only on the fourth dose so far. Next one is August.
 
Ugh! 6 months to a year is such a long time to wait! You get to wear the waiting crown at the end of all this. :king: Yikes!
 
Keeping everything crossed that the Entyvio works Kim. :ghug:

Fab photos! Thanks so much for posting. :):):)

Dusty. xxx
 
Yeah great pics and C looks terrific! But ugh all those costumes! It is all I can do to get packed for a camp that just requires shorts, t shirts and bathing suits and now you ask me to be creative and gather all that other stuff...soooo not showing those camp pictures to my girls!
 
A had mood swings with Prednisone and Neurontin. She also gets moody when she isn't feeling well. Not sure about mtx but I'm sure it's possible.
 
DS has been on it twice
No issues with mood
Only with pred when weaning each time
He weans from a higher dose down for about twenty four hours
 
M had mood swings with pred and Solumedrol. No issues with MTX but she also does get moody when she's in a lot of pain or feeling particularly awful. She does see a psychologist who works in the IBD clinic at the hospital who has been a huge help.

Hope Caitlyn feels better SOON!
 
I definitely think it is the MTX. She gets the MYX Wednesday night. She has been depressed and moody on Thursday through Sunday. This has been consistent for the past few weeks.
 
Does she get nauseous or sick with MTX? M would feel awful - dizzy and so nauseous that she was in bed for two days after MTX (hers was kind of an extreme reaction). That certainly made her moody! It wasn't the MTX I think, just the feeling awful.
 
Is she still on pred or did she just wean off???
Has she seen psych at all to talk to most kiddos need a therapist since the disease is horrid
Especially during teenage years
 
Neither O or T get moody but T gets super tired and I imagine in a teen the fatigue could make them moody.
 
She is off of pred. She used to see a therapist but not any longer. I really truly think this is a medication thing. She is normally the happiest person even when not feeling well she doesn't stay down for long. This is very unlike her.
 
But doesn't she really need the med as a bridge since without her insides were a disaster
Have you spoken to her Gi ??
Just never heard of Mtx having that issue
 
We struggle with MTX too. I think it is getting better 6 months in and 2mg of folate the day of MTX and 1mg the rest of the week. We are doing the methylated folic acid and I think it helps. Good luck sorting it out.
 
If she is feeling even a little nauseous that could could do it....I think these kids get so tired of not feeling well. It certainly has been the case with N. Do you know if the nausea is a temporary side effect that will get better after her body gets used to the mtx?
 
Never heard back from the doctor last week or today. We skipped the methotrexate last week to give her a break until we heard back from the doctor. I will keep trying them.
 
Has her mood improved now,that she has been off the MTX? I hope your from the doc soon.....it's been way too long!
 
Awmom,
Her mood is very bad for two to three days after the methotrexate then she is back to normal. I finally spoke with the nurse. He wants to decrease the dose to 10mg a week (0.4ml). And I am waiting to hear back about increasing the folic acid on the day we give it.
 
We did the same. Made a big difference. Also a small dose of Leucovorin, which is folinic acid and a "rescue" drug for MTX used more in cancer patients. M also tried Kytril (Granisetron) for MTX related nausea (not sure that is Caitlyn's issue?) and it worked better than Zofran for her.
 
Okay so I spoke with the nurse again today (I know an actual phone call from them two days in a row wow!😮)
So he does not want to increase the folic acid. But he does want her to take it the day she gets the methotrexate he also wants to start her on uceris and also cannasa for her continued pain in her butt.
 
Okay. Looked up uceris and realized it is budesonide or entocort. Not sure why he wants to start her on that need to call again tomorrow.
Also forgot to tell you all that her fecal calprotectin is down to 147 which we are very happy about.
 
I don't k ow if you all remembe but a while back I posted about My daughter having shaking in her hands on and off. We asked the doctor but never got an answer about what he thinks it might be. Caitlyn told me today that she noticed it gets worse after I give her the methotrexate. Anyone else notice shaking as a side effect of methotrexate?
I am not sure if she is accurate on it. She hates the shots and I know she wants to be off of it so I am not sure if she is just blaming it on that.
 
Haven't had any experience with shaking but is it just the shot part that bothers her? Can you switch to oral?
 
We asked about switching to oral but her doc doesn't want to switch her. He says the oral is very hard on the stomach.
 
No issues with shaking here. My daughters both had an easier time tolerating the MTX shot, though I have heard of kids who prefer the oral MTX.
 
No shaking for E either, although she does get a little dizzy sometimes the following day. She takes MTX orally and it doesn't bother her stomach.
 
Haha Maya..that would be my girls!

Kim: you cold switch pretty easily between oral and injection...we did that for T right now. She started with injections due to inflammation and the doc wanting her to absorb as much as possible. Then she had a little difficulty with the shot so switched to oral but kept all the injection supplies so when inflammation occurs we could switch back to shots. So maybe you could give it a try and if it is awful switch back? But I understand with her gastroparesis etc it may be a little more difficult.
 
Another thought - I believe the MTX injection is "drinkable" (mostly given to little kids who can't swallow the pills and don't want a shot). I know with M's gastroparesis, she absorbs liquid medications MUCH better than pills (Oxycodone is a prime example - the pill used to take several hours to work while the liquid works in about 30 minutes). I wonder if the MTX liquid would be easier on her stomach??

Just a thought.

This is the link: http://www.kidsgetarthritistoo.org/...re/treatment/methotrexate-for-arthritis-2.php

7. The injection is “drinkable.” If your child’s doctor has prescribed oral methotrexate and she has trouble swallowing pills, ask the doctor about prescribing the injectable liquid, which can also be taken orally. While the medication has to be measured into a syringe (slightly more work for parents), it goes down easier than a pill – and it costs less.
Click to expand...
 
Ds did better with the pills than the shot
No shaking only when weaning Pred the first time but not this time
Much slower wean
 
Thanks Maya! I am going to ask about that. I am thinking the shaking is probably not related but it definitely did get worse after her last shot and then improved slowly maybe just a coincidence. I will see what happens this week.
One piece of good news, she had Entyvio number five this week and tolerated it much better. She didn't get the headache until yesterday, the infusion was Wednesday, and she usually gets it the next day and overal just didn't feel as bad as she usually does after.
 
Could the shaking after shot be a form of panic attack? The shaking from my kid panic attack lasted 20 minutes.
 
Good point Catherine
Panic /anxiety disorders can have lots of physical symptoms that can be confusing to the child and the parent .- adolescents is a common time for them to surface
 
Catherine, the shaking is on and off on and off. It seems to get worse the day after the shot. That being said however she definitely does have anxiety about the shot. She gets severely nauseas as soon as I give it and I think at least partly it is anxiety related.
 
Nothing to add Kim as we have no experience with methotrexate, just wanted to send warm thoughts in figuring this out. I wish she (or any of our kids) didn't have to deal with this. Did the doc say anything else about the entocort?
 
Panic attacks tend to happen before or after the event but not at the actual event
Sometimes they can't be predicted at all
Anticipatory anxiety can lead up to panic attacks
Does she have a therapist to help with the anxiety by using cbt ??
That help Ds Immensely
We make sure he is actively talking and thinking during his humira shots and the pain decreased to next to nothing
Good luck
 
Catherine,
I think that is what it is exactly. It is not a fullblown panic attack. MLP, she used to see someone but doesn't any longer it might be something we have to do again. She really doesn't want to though.
 

Similar threads

L
Entyvio vs Stelara - looking for advice
Replies
13
Views
3K
Maya142
Maya142
W
Entyvio & Rinvoq Combo
Replies
10
Views
506
Domino300
D
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
Anna's Bandit
Stelara Levels
Replies
3
Views
627
Anna's Bandit
Anna's Bandit
InstantCoffee
I've stumped another doctor with my non responsive Crohn's
Replies
2
Views
680
my little penguin
my little penguin

Latest posts

Back
Top