How high were your Remicade antibodies before switching the medicine? We need to make a decision soon.

[momof8yrold]

My son's Remicade antibody level is 100 and the doctor is suggesting us to switch to Humira. His Remicade level is also Zero. He's been having infusion reactions.

I would like to know how high were your antibodies before changing the medications. I don't want to lose Remicade so easily. He's been on it for about 8 months only.

 

[ronroush7]

What kind of infusion reactions has he been having?

 

[momof8yrold]

He has flushing and tightness of cheeks.

 

[ronroush7]

I never asked how high mine were. Everyone is different. I had a bad reaction and couldn't take it anymore.

 

[Maya142]

I'll tag some parents whose kids have had reactions: my little penguin, Clash.

Is Remicade actually working for him considering his levels are zero? Reactions can worsen over time, so that is probably why your doctor wants to switch.

I will say that we gave up on Remicade when it stopped working. My daughters did not have reactions, it just stopped being effective. They did not have antibodies.

Both my girls have been Humira and that worked for them too. One is still on on it, several years later.

Humira is a shot and it does hurt quite a bit. My girls did not like it but got used to it and understood that they needed it. We used ice and did the shot while watching TV, so they were distracted. Other parents have added Lidocaine to the shot to help with the burning.

Humira is going to come out with a new formulation soon, to make the injection less painful. It has already been released in Europe. So keep in mind the painful shot is only temporary.

All that said, Humira worked better than Remicade for my girls. Has your doctor considered adding something like MTX/6MP to Humira to prevent the formation of antibodies? Many GIs are doing that now so your kiddo can stay on the drug.

If you are uncomfortable with switching, I would get a second opinion. But considering your son is reacting, it really is the next step.

There are only a few options for kids, but they are increasing.

Right now Remicade and Humira are approved. Cimzia, Entyvio, Stelara and Simponi are used off-label.

 

[my little penguin]

Ds reacted to remicade twice ( minor reactions -flushing skin peeling ) but the last reaction of prolonged tingling to his tongue while on iv steriods prior to remicade infusion had us switch to humira. He was only on it for eight months as well.
If his remicade levels are zero then his body really is fighting it and the medicine probably isn't able to work properly.
I was devastated when the doctors said no more remicade since they couldn't guarantee that Ds wouldn't react next time and that they would be able to stop it.
Anaphylactic shock can be deadly very quickly so not to be taken lightly.
Since you said he is reacting already most reactions just get worse over time so your not losing remicade easily.
Anaphylaxis can kill even with doctors in the room. Your child has had a reaction involving the lungs and next time he could stop breathing or have his blood pressure plummet so low he loses consciousness/or his heart stops. I am not trying to scare you but that is where you are at once allergic reactions are starting with a drug .

Ds started humira in April 2012 and is still on it.
No allergic issues.
It's working and his scopes are clean.
It does burn so we add lidocaine to the syringe of humira and use a warm pack on his legs.
We have had to increase humira frequency but that was for his arthritis .
He is also on Mtx to stop antibodies from forming .

 

[my little penguin]

Oh and Ds was only 9 at the time btw

 

[my little penguin]

Symptoms
Anaphylaxis symptoms occur suddenly and can progress quickly. The early symptoms may be mild, such as a runny nose, a skin rash or a "strange feeling." These symptoms can quickly lead to more serious problems, including:

Trouble breathing
Hives or swelling
Tightness of the throat
Hoarse voice
Nausea
Vomiting
Abdominal pain
Diarrhea
Dizziness
Fainting
Low blood pressure
Rapid heart beat
Feeling of doom
Cardiac arrest
People who have had a severe allergic reaction are at risk for future reactions. Even if your first reaction is mild, future reactions might be more severe. That's why it's important to carry self-injectable epinephrine if you are at risk, and 911 should be dialed in the event of a very serious reaction.

Understanding anaphylaxis and the things that can trigger this severe allergic reaction will help you manage your condition.

From
http://acaai.org/allergies/anaphylaxis


So since your child had two systems skin and lungs reacted then the reaction is considered systemic . If it were my child and we were at home I would have been instructed to give an epi pen immediately .
In the infusion clinic they can monitor it better in terms of heart rate and blood pressure /o2
But once it starts allergic reactions are extremely hard to stop
Benadryl will not stop an allergic reaction
And iv steriods less the chance of an allergic reaction starting but will not stop it

 

[Clash]

My son had two reactions as well his levels were checked and the antibody level was through the roof 27000 or something like that.

He had had to stop remicade for surgery. Starting back he had a reaction at the 2nd and 3rd infusions. He was switched to Humira.

Remicade had been unable to fully control his inflammation hence the surgery. It had been on remicade that he became asymptomatic though so we were sad that he had to stop it.

He remained asymptomatic on humira but the inflammation has never abated. He is now on stelara, early days, just his loading doses.

The risk of a severe reaction coming is fairly high and press medicating with I've steroids won't stop the reaction, at least it didn't for my son.

 

[malorymug]

Last January my boy's antibodies were 16.6 U/ml. The dose was increased and frequency changed from 8 weeks to 4 weeks. A recheck 5 months later and antibodies dropped to 3.1 U/ml.

So for us, we were able to overcome the antibodies, but he never had a reaction. And we are not sure that Remicade is doing its job since fistulas and abscesses seem to be running rampant.

I'm looking towards changing meds.

 

[momof8yrold]

Thanks a lot for all your inputs. We met the doctor and asked him to give Remicade a try one last time. Our doctor wanted to switch t Humira.
I suggested the doctor to administer my DS 10mg/kg of Remicade at 6 weeks and keep him under observation for 24 hours. If my DS feels good, only then I want the doctor to discharge my son. He said, he'll discuss with his colleagues about this option and get back to me ASAP. If they think, we can try..we'll do it next week. I'm very anxious about the reactions. As I mentioned in one of my previous posts...I'm due for my second kid's delivery in the next couple of weeks too.

Things are going crazy at my end and I can't stop worrying. Just praying that everything goes well and both my kiddos come home safe and healthy

remission....when will I meet you? It's been a struggle from the last couple of years....

 

[my little penguin]

You do realize observation does not mean they can stop the reaction even in the hosiptal even less so since you will have Gi floor nurses watching.
Have you seen an allergic reaction before ?
It tends to happen within 2 hours of the drug /food etc
And is rapid ( seconds)
Once more than one system is involved it's extremely hard to stop and you have death.
The doctors do not have a magic medicine that will stop anaphylaxis.

Ds has had minor allergic reactions while inpatient on gi floors and I was the one explaining what needed to be done. Otherwise they are paging the a Gi attending first who then pages the allergist covering the hospital


I just want you to realize there is a very good reason your Gi wants your child to switch
The risks are extremely high
And hospital setting doesn't reduce the risk of death



10 years ago or so a bunch of allergist decided to adminster oral immunotherapy to kids with food allergies . Tiny amounts to "cure" food allergies .
This was done in the ICU with tons of doctors and nurses around.
First kiddo was given the first or second dose and went into anaphylactic shock
His throat closed then blood pressure dropped and heart stopped all within under a minute.
Having all the doctors /nurses around couldn't save the kiddo.

I don't want to scare you but I have watch anaphylactic reaction in my child once and it's not something anyone would ever want to witness
It like leave car 0 to 60 instantly in under a few seconds

 

[momof8yrold]

Our doctor has accepted my request and he has decided to try the Remicade one more time. But..after seeing your responses, I'm scared to death. Our nurse called up today and told me, he can get the infusion in the main hospital (not the infusion center) and he will be admitted over night for observation.

Everytime, he has had a reaction, we generally stop the infusion for about 20 mins and it is started back slowly. He does fine then.. but.., now I'm so scared...

Oh God...please help...

 

[my little penguin]

What were his reactions so far ?
Was he given iv steriods prior to the infusion and did he still react ?
How many systems were involved ( skin lungs etc..)

I can say Ds reacted twice to remicade very mild
First reaction scratchy throat trouble swallowing while on Benadryl and Zyrtec
So next infusion given iv steriods prior
End of infusion trouble with his throat and tingling tongue
Tongue tingling lasted 3-4 days
Dermo confirmed inflamed taste buds on his tongue
So at that point we stopped and were told no more remicade

Epi pen can slow some reactions /stop if given early enough but no guarantees
Iv fluids can be given to raise blood pressure plus other meds but again no guarentees

My son had his done at an infusion center located in the hospital
But we were told the risk of anaphylaxis was too high and they might be able to stop the reaction


Not trying to scare you everyone's risk is different
But it's important to know what questions to ask and then determine the risk

I just know sometimes state reaction risk and folks think oh as long as the kid is by a doctor they are fine but that not always the case


To give a better example
When a child is believed to outgrow a food allergy
They are put in a clinic room in the hospital
Fed 1/16 amount of a serving and watched like a hawk for 15 minutes with all vitals taken
Then the dose is increased until a full serving is consumed over 2 hours
Then they wait another 1-2 hours to make sure there are no signs of reactions
At the slightest reaction sign rash cough rtc the food challenge is stopped and meds are given to slow the reaction
This is done increase the chance of stopping a reaction

Lots of kids go through food challenges every day
Only a handful fail to the point of needing an epi pen injection during year
This is because only children who are at low risk of reactions and high chance of passing are given something they might be allergic too

Please discuss your concerns with your child's Gi and ask if there are any concerns about a potential drug reactions and what the plan would be to stop the reaction

 

[Maya142]

I think you should definitely discuss what the plan would be if he did react.

We don't have any experience with reactions but I can say that kids do fail Remicade for whatever reason - reaction, antibodies, just stops working -- and then (often) they do very well on Humira. If Remicade is not working for your son AND he has antibodies AND he's reacting, why go through with it?

If it's working well but he is reacting, then you could think about it but you're getting to the point where things are scary. What will they do if he's ok this time -- admit him for every infusion? He may get through with a minor reaction but there is no guarantee that next time it won't be worse.

I have heard of kids staying on Remicade if they have very minor reactions. I know one that is pre-medicated with steroids and Benadryl and does not react anymore. She has continued on Remicade for over a year after her initial reaction.

But I think that case is the exception, not the norm. Usually if a kiddo has reacted multiple times, then you move on to Humira.

Humira is really not so bad. Yes, it does hurt but MOST kids get used to it. And there are ways to make it less painful. And he may even do much better on it!

 

[pdx]

I don't have any specific advice for you, as we haven't had to deal with an infusion reaction yet. But when in situations like yours, where I really can't decide what decision to take, I defer to my daughter's doctor. So in your case, I think I would switch to Humira rather than risk another reaction.

I'm so sorry that you and your family are dealing with such hard decisions right as you're due with your next child. I hope the birth goes well, and that your older child finds remission soon. :ghug:

 

[momof8yrold]

Thanks a lot for all your valuable comments. We decided not to try Remicade again. Remicade is out from out list now

Meantime, I told my son's doctor to hold Humira for a while as I was due with my second kid. I wanted my son to try Budesonide. Our doctor was not in favor for it, but decided to give it a try.

Budesonide worked wonders for him. His symptoms reduced and the fecal calprotectin came down to 190 (it was about 1200). He is still on the tapering dose for Budesonide. He's currently taking 6 mg.

Is there anyone's kids who takes Budesonide as a maintenance drug? Our doctor wants to start Humira now.., but I'm thinking of budesonide 3mg, for maintenance.

Totally unrelated..., I delivered my second kid.., couple of months ago and having my time of sleepless nights. Totally exhausted..., but fun

 

[Maya142]

Budesonide is still a steroid. I believe some of it is absorbed systemically (something like 20%). It may not have all the side effects that Prednisone has, but over time, it can impact things like growth, development and bone density.

At our Children's Hospital, they will not use it as a long-term maintenance treatment on little kids. They will occasionally use it on older teenagers, 18-20 years old, who are done growing but not for more than a year or so and not by itself - only in conjunction with maintenance meds.

What is that scares you about Humira? It's not different from Remicade, except that you are actually less likely to develop antibodies to it because it is not mouse protein. Many kids are able to stay on it for years.

It is a shot and it does hurt, but the new formulation should be on the market within the next year and that is not supposed to to hurt much at all (it's already out in Europe).

Both my kids did better on Humira than on Remicade.

Congrats on the new baby !

 

[my little penguin]

^^^yeah that !!!!
No long term steroids period not a great idea you still get side effects
Ds has been on humira since age 9
He is now 13
He had reactions to remicade after 8 months
Congrats on the new lo

 

[momof8yrold]

We will start the Humira.., but we are planning to go to India soon. So, I want to start Humira, once we are back from India.
We are leaving on the first week of Feb and return back in a month.

 

[Maya142]

If it's a short time, Budesonide should be no big deal.

But we have actually taken Humira to India (many times!). We take it on the flight in a cooler with an ice pack. Security doesn't give us any trouble as long as we tell them it's a medication (and we have letters from the girls' doctors). It stays cold through the flight and it's no big deal at all to carry.

I was always worried about the girls getting infections in India, especially on meds like Humira + MTX or Remicade + MTX, but both girls have been absolutely fine. We are careful about eating out and water, but we don't do anything special.