Remicade/Infiximab Club

This is a place to provide information for other parents about you and your child's experiences with Remicade/Infliximab.

It is also an area to ask questions and please bear in mind that there is no such thing as a dumb question. If you haven't found an answer to what you are seeking then there is every likelihood that it has never been asked and therefore you won't be alone in wanting to know, so ask away!

This is a list of questions for those parent's that have travelled the Remicade path and hopefully by answering them newbies to the treatment will have many, if not all, of their questions answered.

1. Why was your child prescribed Remicade?

2. Have they previously been on a different biologic? If so, which and for how long?

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?

4. What dose and regime was prescribed?

5. Has the dose been changed over time and why?

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

7. How long does the infusion last?

8. Are there any preparations that need to be made?

9. What does your child do when they being infused?

10. Can you be infused if you are unwell or have an infection?

11. Did Remicade work for your child and how long was it prescribed for?

12. If it didn't work or treatment has been discontinued why is that?

13. How is the treatment monitored for success (i.e. what tests and how often)?

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

16. How is the cost of the infusion covered?

17. Any other tips or information?

Bold Numbers: New or rephrased questions (last edited 29/12/12)

Thank you to those that are able to contribute to gathering of this information and if you think of any other questions that would be useful please let me know and I will add them.

For those wishing additional information please have a look at the Remicade article located here in the wiki and at the Remicade Forum located here.

Thanks,
Dusty

We were prescribed Remi for Crohns colitis. Originally 5 mg/kg at Weeks 0, 2, and 6 weeks, upped to 10 mg/kg every 7 weeks after no inital response to therapy.
We experienced no adverse reactions, and the infusion itself lasted around three hours (we generally spent about four on the infusion unit).
If I recall correctly we needed to get all of our vaccinations before starting Remi.
Our infusion unit has a large playroom...she was sleepy for the first one (they premedicate with Benedryl/Tylenol [your child, not you ]) but was playing air hockey/with toys the remainder of the times.
Izz had a low grade fever and was still infused, although she was confined to a room (100)
We were on Remi for six months and it didn't work at all. She had HACA levels drawn and there was no Remi in her system.

She was monitored by symptoms until the six month point, when HACA's were drawn (test is expensive). We also had normal labs drawn to monitor CRP and iron levels.

The infusion was completely covered by insurance with no copay. It was about $6500/infusion, though!

1. Why was your child prescribed Remicade?

Developed a new fistula after 8 months of limited success with 6mp

2. What dose and regime was prescribed?

Loading doses were first, then +2 weeks, then +4weeks, then every 8 weeks; I think it was 100mg/ something or other, a pediatric dose.

3. Has the dose been changed over time and why?

We never changed dosage or frequency

4. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

Occasional headaches, itchy rashes. I now know it's from the rubbing alcohol. No fatigue or reactions

5. How long does the infusion last?

The visit would take 4 hours, you'd check in, they'd weigh him, order the dose, he'd get oral benadryl and tylenol and they'd start the IV. The infusion of Remicade took about 2 hours total, they start slow to watch for reactions, bump up the rate every half hour. Then a saline flush at the end and remove the IV and send you home.

6. Are there any preparations that need to be made?

No. But you can ask to have numbing cream applied before the IV. They would give us some to put on before driving up to speed the appt up a bit.

7. What does your child do when they being infused?

Watched TV, played handheld games, snacked

8. Can you be infused if you are unwell or have an infection?

Never had to worry about it. I suspect it should be delayed for infection needing antibiotics, but not for a cold.

9. Did Remicade work for your child and how long was it prescribed for?

Within a few days of the first loading dose, it was night/day difference. So much more energy, like a normal kid. Would've been his forever drug, I suppose but we discontinued it.

10. If it didn't work or treatment has been discontinued why is that?

It worked great for about 8 months. He didn't bounce at his Dec infusion (usual increased energy/color/appetite) and then was sick over the holidays with fever and upset stomach. Looking into it, we test for antibodies and he'd started building them.

11. How is the treatment monitored for success (i.e. what tests and how often)?

When placing the IV at each appt, they took blood to monitor inflammation rate, liver levels, both that meds are effective and not causing harm. None others.

12. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

for us, he was feeling sick. Not sure about other ways.

13. How is the cost of the infusion covered?

Fortunately, our insurance covered it 100% while administered in the lab. Had a bit of a shock that it was 0% covered through our usual pharmacy when it was mistakenly sent there, they were smart enough to call and question it before filling it! The Remicade web site has info and a program to get it covered and reduce costs.

14. Any other tips or information?

The possible risk of lymphoma seemed so scary to me, important to keep in mind that the risk is miniscule really and rare and untreated IBD is SO much worse. The thinking now too is to double up meds, take 6MP or methotrexate in combo with Remicade that can help reduce the antibodies being built. We didn't do that and maybe should've.

1. Why was your child prescribed Remicade?
C was px'ed remicade at the time of his scope as his CD was severe and located in his TI.

2. What dose and regime was prescribed?
I believe originally it was 5kg every 8 weeks

3. Has the dose been changed over time and why?
Yes, C did great during loading doses, all symptoms went away but when regular dosing started he couldn't make it the full 8 weeks. His dose was upped and his scheduled tightened to every 6 weeks.

4. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
No. He did one time have a blister looking bump come up on his lip 45 minutes after infusion, we called remi nurse she said to give benedryl and if anything else occured take him straight to ER but the bump went down right after taking the benedryl and nothing else came up.

5. How long does the infusion last?
His infusion lasts probably 2 hours 45 minutes

6. Are there any preparations that need to be made?
Before starting infusion they give him benedryl through his IV

7. What does your child do when they being infused?
They have xbox, wii, movies and he brings his tablet, they provide snacks and drinks

8. Can you be infused if you are unwell or have an infection?
We have not had that issue arise as of yet(touch wood)

9. Did Remicade work for your child and how long was it prescribed for?
After upping the dose and tightening the schedule he was still having symptoms so we added MTX(methotrexate) he hasn't had any symptoms since but it has only been 10 weeks since the add of MTX, so far so good, hope it continues.

10. If it didn't work or treatment has been discontinued why is that?

11. How is the treatment monitored for success (i.e. what tests and how often)?
C has blood work every infusion. Some levels are monitored due to using MTX others to make sure inflammation doesn't appear in blood work. Sadly, his inflammation rarely shows in blood work so we now will also do fecal calprotectin test if symptoms arise.

12. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction? GI looks at his HGB levels and others associated with iron deficiency anemia since things seem to be going downhill if anemia starts cropping up. Other levels are monitored due to MTX

13. How is the cost of the infusion covered? Insurance covers C's Remicade treatments, we do have a co-pay until we reach deductable, I think it is 350.00 but Remistart covers the 350.00

14. Any other tips or information?
C is generally tired following the infusion, it lasts about an hour or so and I tend to think it is due to the benedryl and not the remicade. Since we travel for infusion we usually eat out after infusion and he sleeps on the way home.

1. Why was your child prescribed Remicade?

Severe CD in the large intestine only. Hospitalized at dx in ICU. Doc said we needed to get control quickly and felt top down was the best way to avoid surgery down the road.

2. Have they previously been on a different biologic? If so, which and for how long?

None. Received Remicade at dx.

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?

Crohn's Disease

4. What dose and regime was prescribed?

Initially 5kg for loading doses. First at dx, second 2 weeks and third 4 weeks and intent was to go every 8 weeks after that.

5. Has the dose been changed over time and why?

Yes, because symptoms started reappearing as we decreased Prednisone and as we got toward the end of the schedule. She is now on 10kg every 5 weeks.

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

Yes, her eczema is much worse and doc says that could be a side effect but not bad enough to make us give up Remicade.

7. How long does the infusion last?

For the first 4 or 5 about 3 1/2 hours because they drip the Remicade slowly to watch for allergic reactions. Once you reach the 4th or 5th without a problem they can speed them up. She is now there a total of 2 1/2 hours. This includes, weight and height, questioning, pulling blood and saline drip at the end.

8. Are there any preparations that need to be made?

No but make sure they are well hydrated as it helps with the IV and the pulling of blood.

9. What does your child do when they being infused?

Sleep, homework, watch tv, play handheld games, facebook on IPAD.

10. Can you be infused if you are unwell or have an infection?

She has never been ill but I have seen some kids hacking up a storm and some pretty snotty noses. Call and they will tell you.

11. Did Remicade work for your child and how long was it prescribed for?

At first not 100%. It needed the help of Prednisone. After about 3 months we were told we had to add Methotrexate to help it along. We opted for an 8 week course of Enteral Nutrition to get her to remission and that worked. The plan is to hit any future appearance of symptoms with another course of EN. She has been great since stopping EN in July.

12. If it didn't work or treatment has been discontinued why is that?

13. How is the treatment monitored for success (i.e. what tests and how often)?

Symptoms, inflammation markers, iron blood tests.

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?

Did every infusion until we adjusted to a schedule and dosage which showed an adequate amount of Remicade still in her body. Now that we have it figured out tests only when symptoms seem to be reappearing.

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

Liver tests for concerning reaction, inflammation markers, iron, vit D, physical symptoms...bleeding, fatigue, diarhea for failing.

16. How is the cost of the infusion covered?

Insurance covers 90% once deductible is met and 100% once out of pocket max is met. Cost is $7,000 per infusion of course negotiated down by insurance company.

17. Any other tips or information?

At the last infusion doc said no need to premedicate with Benedryl. He said they haven't really found that it was helping with allergic reactions and that they can manage them with or without it.

Daughter Sarah dx March 2013 with Crohn's disease. Before dx she was asymptomatic except anemia, & growth delay.

1. Why was your child prescribed Remicade?
Sarah had moderate to severe damage / inflammation to her terminal ileum

2. Have they previously been on a different biologic? If so, which and for how long?
Nope- she has only been on remicade

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's disease

4. What dose and regime was prescribed?
Initially 7.5mg per kg of remicade at weeks 0, 2 & monthly.

5. Has the dose been changed over time and why?
Just recently decrease dose to 5mg per kg of remicade and now switched to 8 weeks.....this was done because her inflammation markers are now normal.

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
No reactions yet.

7. How long does the infusion last?
3.5 to 4 hours

8. Are there any preparations that need to be made?
premedicate 30 minutes with 650mg of tylenol & 25mg of benadryl

9. What does your child do when they being infused?
Draw, chat with parents, looms scarfs (even though we live in Texas)

10. Can you be infused if you are unwell or have an infection?
I do not think so.

11. Did Remicade work for your child and how long was it prescribed for?
so far yes, now she has been on remicade for 5 months

12. If it didn't work or treatment has been discontinued why is that?
n/a

13. How is the treatment monitored for success (i.e. what tests and how often)?
CBC, C-reactive protein, sometimes fecal calprotectin

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?
No---did not know this was an option

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
not sure- she hasn't been on remicade long enough

16. How is the cost of the infusion covered?
Our insurance plan - but we have to pay $2500.00 in network per child, $250.00 deductable per child and 10%?? of bill?? Seems like it has been a lot, but after a second appeals process I got one of our fecal calprotectin labs finally covered. The fecal cal protectin costs $240.00 before coverage. Our remicade cost is now covered after approval (thank gosh). We are so worried about our insurance changing each year.
17. Any other tips or information?
We just hit Sarah's first glitch with skin fungal infections. Taking her tomorrow to the doctor-- hope to get it cleared up. Good news is she has gained weight -12 pounds and is no longer anemic. Hope she grows taller soon. Another worry is that she's been "asymptomatic" - but moderate to severe damage was happening.....so really what is remission....

1. Why was your child prescribed Remicade?

MREs showed inflammation. GI wanted to avoid problems that would come with persistent inflammation.

2. Have they previously been on a different biologic? If so, which and for how long?

No.

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?

Crohns

4. What dose and regime was prescribed?

Initially 5mg/kg for loading doses - 3 loading doses - First,, second 2 weeks and third 4 weeks and intent was to go every 8 weeks after that.

5. Has the dose been changed over time and why?

Recently moved to 6 week intervals. Prometheus test was done immediately before fourth dose (ie first one at the 8 week interval) and showed no remicade remained in his system.

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

No reactions.

7. How long does the infusion last?

2.5 to 3 hours

8. Are there any preparations that need to be made?

None.

9. What does your child do when they being infused?

Sleeps or on social media sites.

10. Can you be infused if you are unwell or have an infection?

Was still getting over a cold at one infusion - infusion was not cancelled and no changes with infusion or reactions.

11. Did Remicade work for your child and how long was it prescribed for?

It has taken his CRP from 6.5 to 0.2. MRE done 6 months after first infusion showed significant improvement.

12. If it didn't work or treatment has been discontinued why is that?

na

13. How is the treatment monitored for success (i.e. what tests and how often)?

Blood tests at every infusion, not sure about additional testing.

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?

Tested levels and antibodies immediately before fourth infusion, not sure how often this will be tested.

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

Not sure.

16. How is the cost of the infusion covered?

Insurance

17. Any other tips or information?

Well it has been a long time since I have been on here. I am Kacie and my almost 7 year old son Jacob was Diagnosed with Crohn's 3 years ago just before his 4th birthday he has been on Remicade since and has been in a remission I guess they call it since starting the medicine.

1. Why was your child prescribed Remicade? This was the first medicine his Dr prescribed when he was diagnosed, he felt that no other medication would be strong enough to handle Jacob's case of Crohn's.

2. Have they previously been on a different biologic? If so, which and for how long? No been on Remicade and only remicade for 3 years.

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis? Crohn's Oct 2010.

4. What dose and regime was prescribed? He receives his remicade every 8 weeks, but I can't remember the exact dosage.

5. Has the dose been changed over time and why? Yes as he has gained weight the dosage has increased the the time in between infusions has not changed.

6. Did your child have any adverse/allergic reactions? Never had any problems.
If so what were they and how was it dealt with.

7. How long does the infusion last? We are usually at the hospital for a total of 4 and a half hours just depends how long it takes them to get IV in and how long it takes medicine to get to us.

8. Are there any preparations that need to be made? I'm not sure how to answer this one, I do not need to do anything, but the nurses do give him Tylenol, Zyrtec, and pepcid prior to starting the infusion.

9. What does your child do when they being infused? He watches movies and relaxes.

10. Can you be infused if you are unwell or have an infection? I do not think they allow you to if you are sick, we have never had this problem yet.

11. Did Remicade work for your child and how long was it prescribed for? Jacob has been on Remicade for 3 years and has responded wonderfully to it. He no longer has any Crohn's symptoms. He does have a weak immune system that causes him to get sick easily (like colds).

12. If it didn't work or treatment has been discontinued why is that? NA

13. How is the treatment monitored for success (i.e. what tests and how often)? Blood work is done at every treatment, and results are given every when we see his Dr every 3-4 months.

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often? Unsure

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction? They do blood work at every infusion but I do not know the exact tests that are done. We have never had anything come back bad, except they did notice he had some type of pancreas infection, but he didn't really experience any symptoms just noticed by the blood work.

16. How is the cost of the infusion covered? At first we were on Blue Cross Blue Shield and they paid some of it, we also use to be on Remistart and they helped cover some of the cost. We do have a very large outstanding balance with the hospital. Now we are on state insurance that covers the whole treatment, thank God!!

17. Any other tips or information? If anyone has any questions on our experience they can email me at ttktomakin@aol.com. Good luck and stay strong!!

1. Why was your child prescribed Remicade?
-Because he failed Pentasa and Azathioprine.

2. Have they previously been on a different biologic? If so, which and for how long?
-No

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
-Crohn's Disease

4. What dose and regime was prescribed?
-7.5ml/kg every 6 weeks.

5. Has the dose been changed over time and why?
-Yes, testing indicated no medication in his system at 8 weeks.

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
-No

7. How long does the infusion last?
-Start to finish, including pre-meds, about 3 hours.

8. Are there any preparations that need to be made?
-Not officially, but he tries to hydrate well the day before and is pre-medicated with Tylenol, Solumedrol and Benedryl at the infusion center.

9. What does your child do when they being infused?
-Usually plays video games on his iPad.

10. Can you be infused if you are unwell or have an infection?
-As long as there is no fever. Our GI has said, the benefit of the Remicade infusion usually outweighs a cold or infection.

11. Did Remicade work for your child and how long was it prescribed for?
-It is currently working very well.

12. If it didn't work or treatment has been discontinued why is that?

13. How is the treatment monitored for success (i.e. what tests and how often)?
-Labs are done at every other infusion (so every 4 months). Labs are hep panel and crp.

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?
-No and the GI said he'd only request trough levels if DS started feeling unwell again. It's an expensive test so he uses it sparingly.

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
-Recurrence of symptoms.

16. How is the cost of the infusion covered?
-Insurance and Remistart.

17. Any other tips or information?
-It depends on the child, but my son prefers spending an afternoon of playing video games over having to remember to take daily meds.

1. Why was your child prescribed Remicade?
Diagnosed with Crohn's, already on a biologic for juvenile arthritis, so switched to one that would work for both.
2. Have they previously been on a different biologic? If so, which and for how long?
Humira - almost two years, Enbrel (for arthritis) - 6 months
3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's
4. What dose and regime was prescribed?
5mg/kg every 6 weeks initially upped to 10mg/kg every 4-5 weeks
5. Has the dose been changed over time and why?
Upped to 10mg/kg every 4-5 weeks - wore off
6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
N.A.
7. How long does the infusion last?
2.5 hours for the actual infusion, 3 hours total
8. Are there any preparations that need to be made?
Benadryl and Tylenol
9. What does your child do when they being infused?
Napped, watched movies, caught up on homework
10. Can you be infused if you are unwell or have an infection?
Never had to skip one, but were told she couldn't have one if she had a fever
11. Did Remicade work for your child and how long was it prescribed for?
Worked for Crohn's but not for juvenile arthritis. She was put back on Humira because of joint damage that occurred while on Remicade. She was on it 8 months.
12. If it didn't work or treatment has been discontinued why is that?
See above
13. How is the treatment monitored for success (i.e. what tests and how often)?
Did the antibody test twice - no antibodies
14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?
See above
15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
Stomach pain, increasing joint pain, fecal calprotectin
16. How is the cost of the infusion covered?
Insurance
17. Any other tips or information?
M preferred the inconvenience of the infusions to Humira. Even though it didn't work for her joints, her colonoscopy and pill cam were clear after being on Remicade.

1. Why was your child prescribed Remicade?
Imuran not enough to keep it under control and LDN quit working, was not able to bring him out of a flare

2. Have they previously been on a different biologic? If so, which and for how long?
No

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's Disease

4. What dose and regime was prescribed?
200 mg/ every 8 weeks

5. Has the dose been changed over time and why?
Dosage will be upped next infusion due to weight gain

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
None so far

7. How long does the infusion last?
Infusion about 2.5 hours but we are there for about 3-3.5 hours

8. Are there any preparations that need to be made?
They put a heat pack on arm to "plump" up veins and we make sure he is well hydrated

9. What does your child do when they being infused?
Watch movies, play games on ipod

10. Can you be infused if you are unwell or have an infection?
Hasn't come up yet.

11. Did Remicade work for your child and how long was it prescribed for?
YES!

12. If it didn't work or treatment has been discontinued why is that?

13. How is the treatment monitored for success (i.e. what tests and how often)?
Blood (CBC, ESR, CRP) every other infusion, track growth and weight gain each time

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?
Has been discussed but we have not done will wait to see if symptoms are returning earlier and then if needed will test 4 weeks out from infusion

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
Rashes, signs of anaphylaxis, symptoms returning, weight loss, no growth,

16. How is the cost of the infusion covered?
Insurance.

17. Any other tips or information?

1. Why was your child prescribed Remicade?
After being diagnosed with CD and to heal fistula.

2. Have they previously been on a different biologic? If so, which and for how long?
No, this is the first.

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Fistulizing Crohn's Disease

4. What dose and regime was prescribed?
10mg every 4 weeks. She's had 5 treatments so far..

5. Has the dose been changed over time and why?

Not yet.

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.

No reactions, so far so good!

7. How long does the infusion last?

About 2.5 - 3 hours. Depends how busy the infusion center is.

8. Are there any preparations that need to be made?

IV insert, blood drawn for labs, benadryl

9. What does your child do when they being infused?

We watch movies, read magazines. Benadryl makes her sleep for most of it.

10. Can you be infused if you are unwell or have an infection?

I've heard you can, as long as you don't have fever/flu. Cold is ok.. ?

11. Did Remicade work for your child and how long was it prescribed for?

Yes. It has been a miracle sent from Heaven!!!!

12. If it didn't work or treatment has been discontinued why is that?

13. How is the treatment monitored for success (i.e. what tests and how often)?

Her dr uses her fistula healing as a benchmark as well as her labs.

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?

Yes. At every infusion he checks her levels and goes over her labs.

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

If he wasn't seeing improvement, I'm assuming. So far we've had great results!

16. How is the cost of the infusion covered?

Our insurance covers most of it. It costs $11,000; we pay $44.00

17. Any other tips or information?

1. Why was your child prescribed Remicade?
-he could not tolerate MTX (oral & injection), Pentasa not keeping inflammation at bay, his TPMT is zero so cannot have Azathioprine. His last scope showed active disease (UC) and his consultant said his quality of life needed improving.

2. Have they previously been on a different biologic? If so, which and for how long?
- No

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
- UC

4. What dose and regime was prescribed?
- dose not known, regime 0, 2, 6 week loading followed by 8 weekly. This may change as he struggled coming up to the 6th week loading dose.

5. Has the dose been changed over time and why?
- not yet

6. Did your child have any adverse/allergic reactions?
If so what were they and how was it dealt with.
- no

7. How long does the infusion last?
- 2 to 2.5 hours infusion followed by 2 hours observations.

8. Are there any preparations that need to be made?
- LMX numbing cream for IV site, downloading many movies onto iPad and games onto laptop!

9. What does your child do when they being infused?
- sleep
- watch movies & play games on laptop


10. Can you be infused if you are unwell or have an infection?
- no, he had a slight raised temp on last due date, moved to following day.

11. Did Remicade work for your child and how long was it prescribed for?
- initial results seem good although tummy pains and bloody stools returned 2-3 weeks before next dose. We know it's not a magic wand and will take each day as it comes.

12. If it didn't work or treatment has been discontinued why is that?


13. How is the treatment monitored for success (i.e. what tests and how often)?
- bloods done at each infusion, infliximab levels done prior to last infusion (not done each time)
- clinics every 3 months plus I can contact his specialist nurse any time I am concerned.

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?
- yes but not each time

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?
- look at relevant levels in blood
- FCP
- symptom checking

16. How is the cost of the infusion covered?
- we are in the UK so treatment is covered, but as it is expensive each case has to go to a review board (called NICE) for approval and individual funding. This came through very quickly as it was a paeds case.

17. Any other tips or information?
- whilst researching is fine, talk to the specialists who know your child too. Their experience and knowledge coupled with their medical knowledge of your child means that they give you informed choices. Your research means you can understand what they are telling you. Ask any questions, no matter how trivial, contact them whenever you need to, even if it's just checking in and telling them how your kid is doing. I have found the communication reassuring, and M's specialist nurse is a total life saver, she takes the time to listen and will answer any questions. His whole team (both locally and at GOSH) are brilliant.

1. Why was your child prescribed Remicade?
Our GI doctor wanted our son (age 19 - dx July 2015 after two years of diarrhea that he told no one about) to have a Top Down approach and immediately went to Remicade / Azathioprine / Pentasa / Probiotics/ Iron to "hit it aggressively."

2. Have they previously been on a different biologic? If so, which and for how long?
No

3. Is your child diagnosed with Crohn's disease or Ulcerative Colitis?
Crohn's

4. What dose and regime was prescribed?
100 mg IV solution every every 8 weeks

5. Has the dose been changed over time and why?
No

6. Did your child have any adverse/allergic reactions?
No - he is a freshman in college and goes directly from the infusion back to class
If so what were they and how was it dealt with.

7. How long does the infusion last?

2 1/2 hours

8. Are there any preparations that need to be made?
No

9. What does your child do when they being infused?
Tries to do homework but usually is sleeping when I check on him

10. Can you be infused if you are unwell or have an infection?
No

11. Did Remicade work for your child and how long was it prescribed for?

It has been WONDERFUL. I think he will be on it for at least another year.

12. If it didn't work or treatment has been discontinued why is that?
NA

13. How is the treatment monitored for success (i.e. what tests and how often)?

C Reactive protein, Remicade Concentration, CBC with Diff / Pit, Liver Profile and yearly Quntiferon

14. Does your GI monitor your child's "trough level" and/or test for antibodies to Remicade? If so, how often?

Every four months he is tested for antibodies

15. What indications/results does your GI look for that would indicate a problem, either that the medication is 'failing' or that the medication is causing an adverse or concerning reaction?

If he has antibodies or if there is inflammation markers. He also makes sure his liver tolerates it.

16. How is the cost of the infusion covered?
It is $5,000 per infusion. Remistart pays much of it and once our $1000 deductible is met is paid at 100% by insurance.

17. Any other tips or information
I am so glad this is an option for my son!