Success stories with Remicade?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

My son had the first Remicade infusion yesterday and everything went fine. :)

Curious though, he wasn't given Tylenol or Benadryl first. I thought that was normal?
 
We are in the UK but my son wasn't given any equivalents to tylenol or benadryl. We were told if he reatced they would give him piriton( antihistamine) and carry on with remicade. He has been fine

Glad the first one is done
 
DS gets both, but it even varies within our clinic. Another boy we know sees a different doctor here and he doesn't do pre-meds. Go figure.

I've never questioned it because I don't want to rock the remission boat.
 
No tylenol or benadryl here he does get methylprednisolone which has only been a recent addition and not because he reacted, his GI said he read studies that it could help prevent antibody development.
 
In layman's terms, does anyone want to explain what the Remicade is going to (hopefully) do for my son's intestines? How does it work?
 
It's going to block the cells (?) that cause inflammation. Without inflammation, his intestines will be able to heal and act normal again in terms of absorption and digestion. Inflammation can also cause pain, so if he's experienced that before, it should subside.

Remicade is also pretty good at preventing abscesses and fistulas. I don't know the science behind this though.

Humira works the exact same way, but it's made from human protein instead of mouse protein.
 
early on the docs thought the Tylenol and benedryl prevented allergic reactions but our doc says now they are realizing it doesn't much help and that if you are going to have a serious reaction you will regardless. So now at our clinic no pretreating unless there is a highly allergic kid and they get iv steroids first.
 
M was given Tylenol and Benadryl when she was on Remicade the first two times. The third time she was given steroids because of the risk of reaction (since you're not supposed to go on and off Remicade). We did ask about Tylenol and Benadryl but her rheumatologist said they didn't do much.
 
I'm just now noticing that my son's cheeks are quite rosey..should I be concerned?

They gave us no after instructions. I asked if there was anything special we should do, should he take it easy..? The nurse said, no, just like normal.
 
IDK about the rosey cheeks but yes to normal activities here. You can call the oncall and ask about the cheeks. It is your first time after all and you weren't given a list of what to watch for. That is an easy call for them to answer.
 
DS gets rosy cheeks too ever since starting Remi. No idea what causes it, but no one seemed too concerned when I brought it up. DS sunburns easier now too.
 
We love our Remicade cheeks. Definitely rosey. I used to check for fever because I wasn't used to seeing color, but now it is almost normal.
 
For more than a year and half they did not pre-medicade my daughter before remicade. She started to have signs of finger vasculitis after infusion, so she gets benadril and cortisone before infusion now. Rose checks or hot flashes are normal as long as they come and go. They will feel warm to touch. I hope remicade do wonders for your kid.
 
Anyone found a diet that works particularly well with Remicade. My daughter's friend who has Crohn's recommends the food map diet. He is on Humira.
 
The FODMAP diet is a IBS diet out of Australia.

Its a low lactose, low gluten, and low fructose diet.
 
So, my son has had 2 infusions now and he's almost weaned off the steroids, but he's started having pain when he poops again and is tired after. Here we go again, or give the Remicade more time? Ask for a FCP? What do I do now?

We had a nice couple weeks anyway..:(
 
Still in loading dose stage? Give it more time. We did not make it to the first 8 weeks time frame and had to do every 6 weeks and increased dosage.
When is the next infusion?
 
Everyone responds differently to remicade - some quickly but some take a bit more time. If I remember correctly, when you say two doses, those are just two of the loading doses, right? If yes, it hasn't been very much time.

It certainly never hurts to have more info but just keep in mind that an FC test might have limited value right now right now in helping to determine treatment... His symptoms already indicate that there is likely inflammation present so would a high FC result mean treatment isn't working or just that he's not completely healed yet?? I'm not sure if steroids can eliminate all inflammation that quickly?? However, if he's had an FC test before, it would give you a comparison to see if there has been any improvement at all from the steroids and remicade?? And, if this is his first FC test, it would give you a baseline from which to compare future tests.

I know this has been discussed but can't remember offhand - will he try exclusive EN? Liquid diet only for a little while? It might help alleviate his symptoms and/or push him into remission until remicade has a chance to kick in.

I would ask his GI about the Prometheus test (there's a more specific name for it - hopefully, someone can offer it??) - the test will measure the amount of remicade in his system. If he is not at a high enough level, remicade will not be able to help. It's done immediately before an infusion to see if the amount of remicade (both frequency and dosage) are lasting from one infusion to the next. After my son's three loading doses, the day before his first '8 week' infusion, he was tested. The test showed no remicade left in his system and he was changed to a 6 week cycle. He was tested again the day before his first '6 week' infusion and this test showed adequate levels at the 6 week mark (which is where we've stayed for two years now).

The test is quite expensive and there may or may not be issues with insurance. Your son's GI (or clinic staff) should be able to give you some guidance with this.

I'm not sure what else to suggest... :(

I hope you start seeing improvement soon. :ghug:
 
Way to early to expect Remicade to be handling all the disease and I am surprised at the early taper off prednisone. It took my daughter 4 months before she was completely off prednisone and even then Remicade wasn't handling the whole disease and we had to add 6 weeks of EEN with a slow reintro of food. All that time lots of changes in dose and schedule.

Give it time. It takes a while to figure out dose and schedule but I would also be weary of the early taper.
 
Same here
A full 8 weeks from first loading dose till DS looked better
The Med has to build up on the system and the GI tract takes a minimum of 6 weeks to heal sometimes longer
It's not something you can rush or speed up .
Jumping meds isn't going to help either since it needs more time and neweds would just reset the clock to start over at 6-8 weeks
 
It's just that he is having symptoms and a week ago, he was not, but I'm okay with waiting. It's not too bad.

Yes, he has done EEN twice. It did not work the third time.

He has been eating quite a bit of junk food. Organic ice cream, mostly. Hard to stop him from going overboard after going nearly 2 years without chocolate.

He's 6' and weighs 153 lbs, his highest weight yet. :)

Thanks so much. We will wait. :)
 
I would let the GI know what is going on. The schedule isn't set in stone and they may pull him in earlier for the next infusion or increase the dose the next time. Yo shouldn't be seeing a slide in symptoms. He is probably metabolizing the drug too quickly.
 
Hope it gets better soon. It took my daughter 4 infusions, though she did see a little improvement after the 2nd one. It took even longer to find a dose/frequency that really worked for her. It's a process.

The fact that he's already had some response is really very encouraging!

Hang in there!
 
I didn't tell the GI as he never acts as though the symptoms my son is currently having are anything to be concerned about. When my son is suffering more mildly, I get the feeling he wants to say, "yep, that's crohn's".

I really don't like my life.
 
lenny, I had GIs early on who actually said to me "yep, that's crohn's" when I said I still had symptoms. I think here on the forum we're all clear on what we're aiming for these days - deep clinical, biochemical and endoscopic remission - and if your GI isn't on the same page then that's not okay. :ghug:
 
Son had 2 painful poops last night. He said he felt his stomach cramp, then had to go twice, in a short period of time, and when he did it burned really bad, but, there was no blood. I called the dr. and they increased the Pred, but he doesn't want to take more of it and so far is not cooperating. Wee! More fun with Crohn's. (He's 18).
 
Since he is eighteen did you tell him since he isn't following the doctors advice he needs to call the doc and let the doc know and the reason why....
I have done this many times with my kiddos.

Even If he still isn't taking the meds
He needs to be the one to tell the Gi
If he is old enough to make the decision then he is old enough to tell the Gi
 
Has he started taking the Prednisone? How is he feeling?

Second the turning matter over to him for him to talk to GI. At 18 he should probably be taking a more active role anyway but especially when deciding to act AMA. That is fine and totally in his power but he needs to have that conversation with the GI so they can come up with another plan and the GI is well aware of what is going on. Otherwise it isn't fair to the doc who is kept in the dark, or your son who is left to suffer.

Sounds like there are issues between you guys and the GI and maybe looking for a new doc is in order.
 
My son did not agree to the increase in Prednisone and continued the taper, as previously planned.
Despite that, he had a much less painful poop today and seems to be feeling PRETTY good overall..more energy.

We get along quite well, in general, it's just certain aspects of the disease and treatment that cause friction. He hates talking to his doctor! And we will be switching to an adult GI soon.

Thanks!!!
 
I just asked my husband if he'd done the Remistart and he said, no that it won't help us, as we were hitting our deductable anyway and after that everything is free.

But, he said he read it's only good for a year or two. Is that correct?

My husband is retiring in 2.5 years and I'm concerned about our son getting Remicade after that. We're planning to purchase health insurance for him at that time (he'll be 20) but I don't know what it will be, exactly and I'm kinda worried.

How's Obamacare? Is it helpful?
 
Remistart pays for the drug portion of the infusion. When we started on the program they paid for everything over the first $50 per infusion up to so many infusions or a total dollar amount. As long as you had an infusion before you reached your out of pocket max they will pay. We just got a letter stating they will pay for all of my personal drug costs over $5. Not sure if that is a change across the whole program or because we are so many years in.

We are in our third year of Remistart and they just keep offering it to us so I don't think the program stops after a year. It is also not income based. They offer it to everyone.

From what I understand Remicade is coming to the end of their patent. They applied for an extension but I haven't followed what happened there. Biosimilars and generics will be hitting the market so I guess we have to wait and see what the insurance companies decide about that...fail biosimilar or generic first before going to Remi? But again, I haven't been following this news to closely...been obsessing over fecal calprotectin and the prospect of an at home test:ylol:
 
Glad you're switching doctors - it's really important he has a GI he trusts.
It's great that he is still feeling ok despite the taper - hopefully the next infusion will make a big difference!
 
You know everyone jokes about attorneys, but we've never had a bit of trouble with an attorney. Everyone of them has done exactly what they said they were going to do for us. For our family, the trouble has been with doctors and I'm not sure my son will ever trust one, completely. If I told some of the stories, I don't think you'd believe me! I had a doctor lie to me and then assault me right after I'd given birth. No, I didn't press charges, it was the kind of pain that goes away in a few minutes and leaves no evidence but omg what a psycho..we found out later, he disappeared in the hospital when he was supposed to be delivering another woman's baby and none of the staff could find him for over an hour! Yeah, very difficult (stupid, even) for us to totally trust doctors..:(

The father of that baby screamed at him, asking "Where were you?!" and the doctor said, "I have no explanation." Then the father said, "If either my wife or baby die, I will kill you. If they live, I am going to sue you!"
 
Our son has started a vegetable garden in the backyard, which shows that he has energy to burn, which has not been the case since before he was diagnosed in March of 13! He just a hit a new high for weight at 155 lbs. (He had gone from 121 to 104 in September). It has to be the Remicade..

Hopefully a small issue, he has a lot of very sore pimples on his hairline and in his scalp. He's gotten pimples from the steroids, but not so many or so painful. He's going to see a dermatologist next week..could this also be the Remicade? I noticed him breaking out a week or 2 after he recieved his first infusion in April.

He's been slim his whole life, but now he has a bit of a belly and his arms look puffy. Steroids? He's still slightly underweight for his height..
 
If your prone to skin issues remicade doesn't cause them but will bring them to the surface . Sounds like folliculitis
Glad your seeing dermo next week
 
He was able to see the dermatologist today and she thinks that's what it is. She prescribed some creams, but said he could try soaking his head in vinegar/water first and see if that clears it up.

He ended his Prednisone today.
 
That's great that he's feeling energetic! I'm sure the activity will help redistribute any steroid weight gain in no time and the puffiness from any steroid-related fluid retention should go fairly quickly too.

So good to hear that the Remicade is helping!
 
We get folliculitis a lot around here also. Instead of drugs our first line defense is a strong anti bacterial soap...we use Hibiclens. That is what they use in our hospital prior to surgery and such. You can get it OTC anywhere. Luckily we are able to control it with just Hibiclens. You also have to wash his towels etc daily as it is pretty contagious.
 
They didn't tell us it was contagious. My son does his own laundry and I use vinegar instead of fabric softener..hopefully, that will be good enough. One of the creams they prescribed for his head (or his face) was over $200..

Yesterday, noon: My son is in his garden, mostly covered, except his FACE. Beautiful, sunny day. I ask, "Did you put sunscreen on, yet?" "No." "Please do." "I will in a bit.."

The biggest news of all though is my son had a "GOOD sh*t" yesterday. I don't think I've EVER heard his say that!!! :)

Next infusion 6/4.
 
My son had a tiny bit of blood when he pooped yesterday and his pooping is generally not completely pain free, but other than that he feels great.
 
Maybe a fissure? When my son started to have more regular and more formed BM's his bum was not happy. He had become so used to mushy, soft BM's, having normal ones put pressure on the skin down there and he had a small tear. It cleared up ont it's own in a week.

So glad to hear he's feeling well!
 
Met my son's new GI yesterday and it didn't go super great. :(

He starts taking the history, and I could tell right off that he wasn't the most sensitive individual, but that's not super important. My daughter (the RN) tells me a lot of popular doctors are actually the worst doctors (their patients tend to have long recoveries or die). So a great personality doesn't mean a great doctor..

But, he said a few things that didn't sit right with me. He asked why we'd gone with Remicade instead of Humira and I told him because my son was so weak and depressed at the time, that I knew he wouldn't be able to give himself the injections consistently, on time..especially since I'd read everywhere how painful they are. (It was a struggle to get him to take his vitamins and Prednisone at the time). He said, "He would have done it, if he had to!" And we actually argued about this for several minutes! I finally said, "I don't know why we are arguing about this. I saw my son, you did not. I was worried that he might KILL HIMSELF if he had one more painful thing to deal with.." He said, "When people get diabetes, they think they can't give themselves injections, but they ALL do it!" "Idiot" popped into my head. :(
Is he totally unaware of the teen, male suicide rate?

He also said that Humira is not painful. "That's what my patients report."

He brought up possibly adding the other drug with Remicade..the one that takes remission rates from 44% to 58%. (He said his experience was more like 55% to 70%)
Yet this drug doubles AGAIN your chance of getting an incurable cancer, which they see almost entirely in young men. I'm bad at remembering names of drugs. Does anyone know which one I'm talking about?

Then I brought up deep mucosal healing and he said, "If we decide that's our goal.."

So, according to him deep mucosal healing is optional.

He recommended doing an FCP and scoping my son in 6 months to a year.

All thoughts appreciated!
 
Azathioprine? It's often used with biologics.

Sorry to hear you had such a bad appt. You shouldn't have had to justify Remicade over Humira - that's just silly. Will your son stay with this GI or find another?
 
Anti tnf is anti tnf. I agree with Maya, method of delivery, what does it matter to him?

I also think he is talking about azathioprine. Now while it does increase chances of cancer keep in mind the absolute numbers are still only 6 in 10,000. It does have a good track record of lengthening the time you can stay on a biologic and also keeping antibodies at bay. There is some research back lash against the thioprines and papers coming out in support of Methotrexate to also lengthen time you could stay on the anti tnf's, keep antibodies at bay and with less risk of the cancer so you may want to research that and ask the doc about that.

Sounds like this doc may not be on the same page as you guys and I would be looking for another doc that you feel a better connection with in regards to treatments etc. I am wondering what this doc's take on testing levels is given all the recent research we have been posting here.
 
Maya142 said:
Azathioprine? It's often used with biologics.

Sorry to hear you had such a bad appt. You shouldn't have had to justify Remicade over Humira - that's just silly. Will your son stay with this GI or find another?
Click to expand...

Thank you, yes, I believe that was it! Any advice on whether to add it? I could tell he didn't think Remicade would work alone for more than a few years. :(

Since we got off on the wrong foot, I may try another doctor in the same group. It's 7 minutes from our house. And my son hates going to the doctor and the longer it takes, the more he hates it. So, finding a nearby doctor is how I got him to not stop going to the doctor!
 
M is on Imuran (Azathioprine). She's had no side effects besides nausea when increasing the dose. We added it when she was on Remicade, both to prevent antibodies and to give Remicade a "boost". M had a bad reaction with MTX but really no issues with Azathioprine. We did do weekly bloodwork in the beginning to make sure her liver tolerated it and her WBC was ok, and everything was fine. No increase in infections or anything like that.

Many doctors like to use drugs like Imuran and MTX to prevent antibodies so that biologics last longer, particularly since there are limited biologics.

I agonized and agonized about adding MTX/Imuran to anti-TNFs but honestly it made a big difference to both my girls. The risk is still small and for us the benefits were huge.

Hope you can find him a good doc!!
 
I was 50kg and had 3 resections of the gut by the time i was 27 years old….i started remicade and it got me well again. I am still on it now, ten years later!
 
Realistically, if Remicade stops working for my son, he's going to end up dying over time, piece by piece, no? What other options are there?

Humira. Then what? I'm not trying to be morbid, I am asking because I need to know how important it is that he not build antibodies.

Would you risk adding it with an 18 year old male? :(
 
I did add it to an 8 year old male who is now 11.
There is way more risk of dying just riding in a car.
If he is driving and age 18 the numbers go through the roof
Crohns is the least likely thing to cause death for a teenager in terms of statistics
 
Yeah sorry but I feel the need to set the record straight here. The mortality rate from Crohn's alone is extremely, extremely low. The biggest risk is complication from under or untreated disease. So if the doc is telling you to treat the disease the best way possible they would add this or that, then you have to weigh that with the risks of the drug.

I can totally understand your hesitation to add Aza so why not have a discussion with the doc about alternatives? As has been said on here many times, many patients choose to add Mtx and like I said before recent research supports it's use to keep antibodies at bay and extend the life of Remicade. Pretty sure I posted a link to a video on the topic.
 
There are still options after Humira - Cimzia, Entyvio, Stelara, Simponi. There are more in trials. That's not to say you shouldn't add an immunomodulator like Imuran or MTX if you decide to, but just that you should stay positive - there is a lot of research happening, very promising research.
 
@lenny you sound alot like me when I get going with myself in my head :). And your son also sounds alot like mine (he was DX'd at 17 and is now 21). He is a smart, willful kid, and it is hard to balance letting them begin to control their own care, while also making sure they don't do anything stupid. It is a partnership, and an interesting process to be sure....

We're about to start Remicade as soon as insurance clears. He has been on Imuran and it is no longer working. For what it's worth, GI plans to keep him on Imuran (AZA) to give Remicade the best chance of working). He says we can drop it off, once he gets to remission. He is slightly dismissive of the risks, which bugs me a bit for obvious reasons, though in his defense, he knows the stats and he is speaking pragmatically vs. emotionally. Our GI's goal is 100% remission or else, so he is aggressive.

Anyway, the reason I was writing was because you raise the question about options for when Remicade fails. What do we do next. I think the same way alot - one of the most awful things about this disease is that even when things are calm, you're just waiting on pins and needles for the other shoe to drop. It is really awful - the disease just sucks. Period.

But then I have to get myself under control and remember to go one step at a time. I also try to reassure myself that the research being done right now is incredible, and there are new treatments on the horizon. But most importantly, we should try our hardest to take the next problem when it comes, and not before. There is too much to deal with as it is, without trying to forecast the future. I fight with myself every day about this and I feel for you going through the same inner monologue.

So best of luck to you and your son, and I wish you BOTH a long success on Remicade, and strength to manage whatever comes next, if and when it does.
 
Theresad, I am having that same inner monologue! My 10 yr old son is switching from MTX injections to Remicade with a lower dose, oral MTX. We are doing the preliminary tests-chest X-ray, TB, etc., and hopefully it will be underway in no more than a couple weeks.
Crohnsinct, this is what our GI does-Remicade plus MTX for boys, Remicade plus Aza for girls. And our GI reminded me we have to deal with the devil we know, not worry about the "what ifs". That's hard.
And Lenny, I share those same worries, but our GI said to think in terms of a 5 yr plan. He said there is a lot of promising research on the horizon, and who knows what the next few years will bring.

It's great to have the support I find here, and to know I am not alone on this crazy ride. I hope I can share a Remicade success story soon!
 
Thanks, theresad! I needed to hear that as well. My DS is building antibodies which has sent me into a bit of a panic and wondering what he'll do next. You're right, though... I need to focus on the short term and not borrow trouble. He's doing fine right now. He'll be fine awhile longer. We need to enjoy this as long as we can.
 

Similar threads

B
Another biologic to be added to Humira?
Replies
1
Views
384
my little penguin
my little penguin
P
Humira Fail What Next..
Replies
23
Views
5K
my little penguin
my little penguin
CrohnsKidMom
Remicade with low dose Methotrexate. Should we stop the Methotrexate?
Replies
9
Views
1K
asadmom
A
C
Methotrexate
Replies
7
Views
1K
braveheart
braveheart
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D

Latest posts

Back
Top