Thoughts on stelara or entyvio?

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Glad you are a bit better. As Dusty mentioned I seem to remember reading something about yellow stool and bile malabsorption
 
Brr. It is so cold here!!!!
It is snowing like crazy too!
So I didn't have a chance to post yesterday but I complained to the office manager about my daughter's doctor not calling us back. She said she would try to find out why she has not returned our calls. Hoping to hear back on Monday about what is going on.
 
I hope you hear back Monday Kim. :ghug:

I think I need a lazy Sunday afternoon nap…I read post and office manager, I then put the two together and wondered why you would be complaining to the Post Office manager why the doctor didn’t call! :yfaint: :lol:

Dusty. xxx
 
I don't know about entyvio but my doctor is considering taking me off of Stelara. He says it is not doing me any good.

2
 
ronroush,
our doctor says stelara has very low success rates for crohn's disease. she said she doesn't even bother with it.
 
kimmidwife said:
ronroush,
our doctor says stelara has very low success rates for crohn's disease. she said she doesn't even bother with it.
Click to expand...

Cimzia worked for a while and then it failed. I was om.Remicade twice. I developed a rare side effect :folliculitis. I don't know what my doctor will put me on next.

2
 
ronroush7: do you mind me asking why they took you off for folliculitis? MY daughter has been fighting it off an on since the summer and no mention yet of stopping Remicade. Maybe her case is nore contained?

Sorry for the hijack Kim.
 
Just catching this thread. Have to ask rollinstone did you try the antibiotics treatment? My kid did. it is brutal and not for the faint of heart. Even though it might have triggered my kids 4 month remission I would NEVER do it to her again. Side effects were worse than Crohns symptoms themselves.
 
SM,
We did just flagyl.
Anyway great news, we finally have a plan for her to get her entyvio done! The first dose is next week. I will let everyone know how it goes.
 
Last edited:
That's wonderful!! So glad it finally got worked out. Hope it works like magic!!
 
At last! Woohoo! I hope all goes smoothly from hereon in Kim and it works wonderfully well for your lass. :ghug:

Dusty. xxx
 
Ronroush,
Entyvio is a brand new class of medications that is not related to humra or remicade. My daughter is allergic to those and cimzia. Cimzia is the same class of drugs. She is also allergic to imuran. We have had a rough time with allergic reactions. Fingers triple crossed for her to tolerate entyvio.
 
i picked up a patient guide to entyvio at my GI doctor appt and now I am getting nervous about it. It says there is a reasonably high rate of people having allergic reactions to it. With Caitlyn's history that makes me nervous. Also it says it does suppress the immune system which was not what her doctor told me. I am surprised her doctor didn't want to do a TB test before she started it. Luckily she did have one before remicade so hopefully not something we need to worry about.
The infusion itself only takes 30 minutes but then I heard they have to observe for several hours afterwards to make sure she doesn't have a reaction.
 
Cimzia is still a TNF blocker like Remicade & Humira. Though all TNF blockers have the potential of antibody development, the newer ones are showing less and less risk. Just because you have a reaction to one TNF blocker does not mean you will have one to another. Meds like Cimzia & Simponi are really reducing reactions in patients from what I am hearing. I would mention it to your doc Ron.

I hear you being cautious about another TNF blocker. After my kid went into Anaphylactic Shock & was sent to the ER & hospitalized on Remicade, so the thought of another biologic was not on my list to chance trying again. She has no issues with Simponi. There are enough differences even if they fall into the same classification. Hope that helps.
 
Also it could have been the additives to the iv when they mix it with the drugs
You can be allergic to anything
 
I almost had a heart attack this morning? They called and told us they moved Caitlyn's infusion to Friday without telling us. I was like no we can't come Friday we have other appts already scheduled for then. I called her doctor and thankfully her doctor called the infusion place and told them they had to get her in for tomorrow. But the stress unti, we got it resolved! I am still shaking I was so upset with them!
 
Good luck tomorrow! Fingers and toes crossed that she tolerates it:ghug:!!
 
At the hospital. Because of her multiple medication reactions they decided to premedicate with Benadryl and want us to stay for two hours after the infusion. They are also going to run it over an hour instead of thirty minutes.They were supposed to start it at 8am. The pharmacy still has not sent it up to them. Typical hospital just like the military, hurry up and wait!
 
Finally started about fifteen minutes ago. They decided to give her Benadryl and prednisone prior. The Benadryl knocked her out. She is fast asleep.
 
How is she doing now? What kind of allergic reaction did she have in the past? Do you have an EpiPen to use at home in case she has a latent reaction? I'm thinking of you and your daughter today and praying that she will have a good response without side effects to this one.
 
Sorry I didn't post earlier but I am fuming!
So Caitlyn started to feel ,Ike she was having some chest tightness. It it ends up she was dehydrated and they had given her Benadryl and zofran and finally steroids before the entyvio. I think it was just a lot for her. The nurse called the doctor to come evaluate her. We did not think she was having an allergic reaction to it but the nurse must have said something to the doctor about an allergic reaction because the doctor came in and starts going off on how Caitlyn is fine and this is not an allergy and how she didn't have an allergy to cimzia because then the nurse practitioner would not have let us leave. She was basically accusing us that we made up the whole allergic reaction thing! She was not there when Caitlyn got the cimzia the NP was there. She was out on sick leave.
I am so pissed. I did not make up Caitlyn turning red and splotchy or her getting a low grade fever within 15 minutes of the shot and then having itching all over her face and chest. Plus the nurse practitioner saw this and is now denying seeing it. She told us to go out and get Caitlyn the Benadryl right away (we had it in the car) and that if she didn't get better to take her to the ER. She even asked us if we felt comfortable leaving or not and we said since I have experience in the medical field we felt comfortable. After two doses of Benadryl all the symptoms resolved except for a terrible headache Caitlyn had for several days after.
I am beyond angry and I don't know what to do about this. Obviously the nurse practitioner lied because she realized she made a mistake letting us leave. But how dare she lie!
I didn't want my child to have an allergic reaction. I was very happy for her to get the cimzia. It is a heck of a lot easier then having had to deal with this whole entyvio business.
How do you all think I should handle this?
We are kind of stuck at this piont as the other doctors in the area feel Caitlyn is to severe a case for them to handle.
 
Typically any time there is a allergic reaction to any meds in a hospital setting
The room is swarmedby mass amounts of people including a doctor to assess the situation
It it then documented in the charts
If it's multiple system ana - a fast ride down to the ER if your currently outpatient.

Was she given the Cimzia at the hospital clinic or a seperate general office facility ?
Wasn't there any doc present in the building ?
I know for DS he is not permitted to even get an allergy shot in any building unless there is a doc on the premises somewhere .

What do her medical records say from the date of the office visit ?

I know DS can't have remicade . He had two seperate reactions at the infusion center
But since the docs didn't put it offically in that he was allergic to it .
It doesn't exist
Although there are multiple correspondences stating from all his specialists that he did react and should never be given the drug again.

I think your best bet would be to get a copy of the medical records.
I also take pics of any and all rashes etc during a reaction so the docs that were not there could actually "see" what happened .
 
At A's last infusion she experienced chest pain/tightness. At the mere mention the nurse shut off the pump and called her doctor. He wasn't able to come and see her so she was rushed down to the ER. It was deemed that she was actually having an asthma flare (just happened to coincide with infusion), but it was still charted as a "possible allergic reaction" and the rate was decreased significantly for the remainder of the infusion. If Caitlyn truly had an allergic reaction to the Cimzia she shouldn't have been allowed to leave without being evaluated by a physician. I'm not saying she didn't have a reaction....I'm saying I wouldn't trust a medical professional that allowed her to leave.
 
No advice Kim, but sending hugs.
What a horrible experience for you and Catilyn. :ghug:
 
MLP,
I haven't seen the chart but after today I am sure it does not reflect what happened.
Dancemom,
being a medical professional myself and seeing that the Benadryl eased her symptoms and the fact that we live under five minutes from a pediatric ER (very small hospital but their Peds ER is actually pretty good). I felt comfortable with taking her home and observing her.
Oh MLP it was in the office not the hospital.
She also was not having an anaphylactic reaction though I know it could have worsened but the Benadryl definitely helped. It eased the flushing and her temp didn't rise anymore. She was
97.8 when we arrived and her temp rose to 99.8 after the shot.
 
Temperature typically does go up with biologics
At least it did for DS with remicade and in the beginning with Humira .
If your still in NJ can you get in to DuPont or CHOP for care ?
 
One last thing the insurance may be your key
They would not approve entivio unless it was documented that there was a valid reason for stopping the already approved cimizia .
Might be worth getting those records
Hugs
 
Ugh, Kim, don't people make you mad sometimes? I'd probably be arguing back at the doc and leaving in tears! I hope you fared better, at least publicly. I hope she was just having a bad day and apologizes later... Ugh, ugh, ugh!
 
Oh gosh what an ordeal! Hugs for both of you!!!

It is frustrating when they would lie to you like that. Always take pics of an allergic reaction for future. If it is spreading draw on her skin a pen mark to see if it gets worse or better. I think the reason D went into anaphylatic shock was because at the infusion prior she started to get chest pains and a rash and the doc came in and told the nurse it was fine and to keep pushing through just slower. It was the NP that was saying for us to go back to the doc and tell her. It is why at the last infusion D had she was getting the antibody test. Even at that infusion I had to get them to stop twice & check with the doc and thank G*d when he had the NP start again I asked him to stay for 10 minutes and watch her. Those docs get paid for our kids being there. They can do their job and check more thoroughly. It was then that D vomitted violently, and then passed out. I still regret letting him have the NP start the infusion again. If I wasn't so freaked out that I thought my kid just died in front of me I would have hit that doctor. By the time she was settled into the ER the clinic was closed or i would have gone off! Glad you trusted your instincts and did the benadryl and checked in with the ER.
 
I would also request the records but, can you send an email to request the records?

Asking because in the email I would note everything that happened to Caitlyn, her reactions during/after, etc. and then mention that you would like the records to clarify as there seemed to be some confusion re what happened when you spoke with the doctor. They may not change what they're saying but they will definitely be on alert next time knowing the incident is now in writing. Not sure how it happens there but my emails to S's GI are added to his file.
 
I am feeling a little better right now. I spoke with the office manager for about 45 minutes. She was very nice. She sent an email to the head doctor explaining exactly what happened. She said the head doctor will call me back later today.
I told her I am not some crazy baron Von Munchausen by proxy parent. I reminded her that I too am a medical professional. I told her my goal is to have my daughter healthy. That we were happy about the cimzia and really wanted caitlyn to have it and had no anterior motives. Trust me I wish she could be on the cimzia. The entyvio is a pain in the neck. We have to travel far to get to that hospital to get it done and we would much rather have had the cimzia work out. So I am waiting to hear back.
Meanwhile Caitlyn is really not feeling well today but I heard that is not unusual.
I also realized that she has not had labs done since November and when I spoem with the office manager I asked if we can get some labs done as well.
I will update as soon as I hear back.
 
So still no call back from the head doctor. I spoke with the office manager again today. She was surprised we had not heard back. She sent another message to her.
Caitlyn's headache is finally better. She still doesnt feel well every time she eats but she is not complaining as much between meals.
 
Now that Entyvio has been approved in Canada (though not for kids) doc wants to put D on this. she says We have 6 months to wait as there is currently none of the drug in Canada but her GI says that should be sorted out in the next few months she hopes. Then she has to appeal to let D go onto the med as she is only 14. I'm getting tired of being the guinea pig for these meds. Plan is to start this after surgery. Not looking forward to going back to infusion appointments. Please tell me this med is worth it.
 
Can't believe they haven't phoned. Glad the headache is easing off, hope she starts to feel better soon
 
SM,
The doctor says it takes a while to work but the longer people are on it the better the results.
Anyway the doctor in charge finally called. She said she is not sure why the misunderstanding occured but that the chart reflects that Caitlyn had a reaction to the cimzia. She is going to speak with our doctor and get it straightened out. She also will find out about labs for her.
 
I am glad you got that figured out. I recently found out there is no antibodies test for Simponi. Made me wonder with the newness of Entyvio is there one for it? Not that I wish my kid to go through that again but the thought comes to mind.
 
There probably will be an antibody test eventually
There is one for Humira now
You can build antibodies to any drug
Remicade just has a higher probability of allergic reaction due to the murine protein.
Once you have antibodies the drug is less likely to work as well or stop working completely .
 
Yes, we were told there will eventually be an antibodies test for Simponi, especially now that it is approved for UC. For whatever reason, GI's seem to use antibody tests way more than rheumatologists and while it has been approved for RA/AS for years, it was only just approved for UC.

Glad you get everything straightened out Kimmidwife!
 
Sorry I was MIA for a few days. I had my next infusion and was totally out of it for a few days. Anyway I spoke with the doctor and she wants caitlyn to do an MRE tomorrow, blood work and a fecal calp. I suggested it would be a good idea to see what is going on and get a baseline as well for the entyvio treatment. Her next infusion is Wednesday.
 
So fed up with this hospital! Her appt was 1:15, 2pm they gave her the contrast and after 4 they finally took her back!!!
 
Glad your done
Contrast is suppose to take two hour to move to the right places before the imaging
Hope you get results soon
 
MLP,
In the past they took her back after an hour and then again a second time. They took her back 4:30 and didn't finish until 5:30. We are all exhausted. I am not sure when we will get results. When we go for the entyvio on Wednesday I will ask the nurse practitioner if the results are in.
 
Kim
We were surprised at his MrE in jan
A lot of the studies changed how they do the contrast ( timing movement etc ..)
To improve the images vs his last time .

Fingers crossed for inages Wednesday
 
Hi Kim,

That schedule is exactly what happened with T. Arrive a half hour before starting to drink, to do paperwork etc. Drink for two hours, then imaging for 45 minutes to an hour.

Results were to our doc next day. Hope her results are there Wednesday!
 
Glad it's over, awful having all the waiting around. Hope the results are okay. Hope you are doing better after your infusion
 
Unfortunately my infusion results only last until today. The last time when I had the five days it lasted a month. I am a bit down about it.
Fingers crossed for all to go smoothly at the infusion tomorrow. Her joint pain is really bad. I am going to ask the doc possibly about trying methotrexate again for the joint pain. I have read about some adults doing well with the combo of entyvio and methotrexate.
 
The infusion went well today. She is not feeling great now but I expected that. We will see how tomorrow goes.
 
CIC,
The nurse practitioner gave us a vague answer about them. She didn't really want to discuss them bit wanted us to discuss with doctor. She said they didn't show any wall thickening but that was about all she said.
 
Maya,
She has the headache again but not as bad as the first time. She is also having a lot of stomach pain. She is generally not feeling great all over like last time but not as severe as last time.
 
Went to a specialist yesterday. If my Crohn's is active, Entyvio is one of the medicines they might consider.

2
 
Wanted to update. Yesterday was awful. She had horrendous stomach pain and the headahche as well as bad nausea all day. Today though she seems better. Still very nauseas it not complaining yet of the bad headache and stomach pain. Fingers triple crossed that she is on the upswing. I hope this gets better with time. Hoping she won't go through this after every infusion.
 
Had a productive apt with the GI today. She said for the amount of pain my daughter is having she was surprised at how good the MRE looked. All her blood work came back normal but that is not unusual for her. Still awaiting the fecal calp. results. She thinks the prednisone did what it is supposed to thankfully. Now we just need the entyvio to work.
She wants her to see a pain management doctor and to see the immunologist again about a possible mast cell disorder. She also wants her to do a 24 hour urine to check for one more thing which I am not exactly sure what it is but it has to do with the gut making some type of abnormal cells.
 
Glad MRE results are better than expected but I hope the entyvio begins to bring greater relief for Caitlyn!!

Hope you are able to move fairly quickly with the pain management and immunologist apptmts... :ghug:
 
Ugh Dusty. I have a kidney stone, I am really suffering. The pain started last night. It is awful.
Caitlyn is doing better. She seems to improve the second week after the infusion but she still has a lot of pain whenever she eats. We started her on Amitryptalline. I am really hoping it helps.
 
Ugh. Hoping things improve.

I wanted to mention also...izzis gi considered taking a pay cut to work at DuPont-he was super impressed with their program. I can't imagine traveling between states to get medical care for both of you...hugs!!
 
Caitlyn's fecal calp. Result was 350 down from her last one of 450 so a little better which is good.
Myself I am not doing well. I have another kidney stone!!!! It hurts even worse then the last and is in the opposite side. UGH!!!!
 
Caitlyn has been having terrible pain all week which got significantly worse over the last 24hours. Now in the ER waiting eval.
 
Sorry to hear that, hope they can help. Sorry I missed your posts about your kidney stones, hope they have passed and the pain settled
 
They did an ultrasound checked for a uti and sent her home with a scrip for codeine and that was it. 😞
They didn't want to deal with it and said see your GI to follow up.
 
Oh, wow! Hope the codeine helps (surprises me, as a lot of ers here won't give anything), that she can be seen soon and is feeling better!
 
Hi Everyone,
I was hoping that someone could offer an update on how they are doing on Entyvio or Stelara. My son is currently on Remicade with questionable results. Doc says Entyvio may be next step. My son has Crohn's Colitis. Any shared experience negative or positive would be appreciated.
 
Hi All,
We got an ASAP appt with this new pain management doc for Thursday. Fingers triple crossed that he can offer some help for her. We really need something to help her.
Rose,
My daughter goes for her third infusion this week. She has had no improvement yet but the doctor says it can take a long while to see results with this drug.
 
Good luck Kim, will be thinking of you and Caitlyn! Really hope the pain management doc has ideas.
 

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