Remicade advice / 17 yrs old and just diagnosed

[Clapton]

I'm a mom of 17 year old boy who was diagnosed in nov. With crohns.
His only complaint was a stomach pain that came and went randomly .
Family dr sent us for blood test which should anemia . Due to family history ( two aunts on one side) we went to GI. He did more blood work, colonoscopy and MRI. Final results showed perianal disease with fistula ( closed I think) 2cm of inflamation of distal illum and proximal colon. ( I hope I have terms right).
My son never complains and is leading a normal active life. He is a little under weight 6'2 and 157 lbs but Drs not worried about this.
Question.
Wants to start on Remicade as first drug. Says he believes him to be a high risk for further progression even if he feels fine.
What are the thoughts on this " step down" approach.
My sons plans on traveling and leaving home for school next year ( live in ontario)
Have apt tomorrow to dicuss everything with dr.

 

[valleysangel92]

Hello, welcome to the forum

I don't personally have experience with remicade but there are plenty of people on here who do.

Crohns is tricky in that it doesn't always feel as serious as it is, it can fester unnoticed with only mild symptoms for years before it starts to 'feel' serious, often resulting in complications. It actually takes quite a bit of damage to cause pain from the intestines as there are a reduced number of pain receptors in the intestinal wall.

If your son has or has had a fistula, it suggests to me that his disease has been festering for a while and is at least moderate and possibly severe

The top down approach seems to be used more in young people and children. The idea is that by starting with the more aggressive medications, the disease is brought under rapid control , lowering the risks of long term complications and delaying or preventing the eventual need for surgery.

You can ask your sons doctor to explain his reasoning for starting with such heavy duty medication. Remember that if you aren't comfortable with something then you can question it.

 

[Orchid]

With Crohn's disease at this age it's fairly normal. Crohn's that presents before the 20s has a very grim prognosis and the instant escalation to biologics is a combination of the severity and the fact it typically doesn't respond well to Azathioprine or Methotrexate. I know the side effects can seem bad but the greater majority of patients on these medications never experience serious side effects and the cost of untreated Fistulazing Crohn's Disease can be far higher.

I'm going to ask TheOcean to step in and talk about her experience with fistualizing CD and hope you find the answers you need.

 

[theOcean]

And tagged.

I was diagnosed at 19 with Crohn's, and have been on Remicade before. Like valleysangel92 said, if he has a fistula he's probably been dealing with his Crohn's for awhile, even if he hasn't been showing many outward symptoms. Fistulas can be very painful to deal with if the abscesses get worse, and Remicade (or Humira, which I'm currently on) are both helpful medications for dealing with them, as well as antibiotics. So I think that's appropriate from what information you've given here.

If you have any questions or concerns about Remicade or fistulas, I can happily answer them for you!

I also live in Ontario, if I can give any advice about coverage.

 

[AJC - Australia]

how times change….five years ago (in Australia) Remicade was only given in extreme cases….when i started it in Australia in 2005 it cost a LOT of money to get it, or you had to meet a lot of criteria to be approved by the PBS (govt). It has only this month become available for people with Colitis.

I have been on remicade every 8 weeks for 7 years and feel great.

being 17 and being diagnosed is a dangerous time…….i remember being in that boat and i went into denial….moved out of home, went to university but denied my body the love it needed…home cooked meals, exercise, laughter…etc….i was eating out, eating crap food, drinking lots of alcohol and taking other drugs on the weekends….the disease got worse. Can i encourage you to spend some time in the kitchen teaching junior how to cook good vegetarian food? Cooking meat is easy, making the other stuff is the challenge...

Its a tough disease to come to terms with and perhaps junior should consider staying at home for a bit longer until the disease is under control and I know that is hard to say to a 17 year old and the response will be 'i dont want the disease to affect my life like that', but that is nothing….affecting your life is when you cant work and are in hospital all the time having surgery, you cant eat and you can't do ANYTHING and that is a very real danger and one that should be noted, as many people with fistualising crohns disease are fighting a very hard battle. When i was 18 I had to defer university and move back in with my folks, i had no choice. I didnt return to university until i was 23 and i didnt return to good health until i was 28 and started taking Remicade regularly.

I hope that helps…..good luck super mum. There is a 'parents with crohns' group on here, very supportive of people like you….worth joining!

 

[Clapton]

Not sure what happened to my reply a minute ago but here I go again. Thank you very much for your responses . They all are making things clearer for me. Fortunately my son is somewhat mature and I'm not worried about him leaving home. My plan is to get everything in order this next year while he is in his final year of high school so he is better able to deal with things when on his own. I hope the stress of having to get top marks to get into a top school do not have an adverse affect on him.
We are lucky that our insurence will pay 100% of the drug but if he decides to travel or do an exchange while at school, are clinics easy to find, how flexible is the schedule if he's on vacation ect...? Are there immediate side effects we should look out for( tired....) ?
Thanks again for all the info.

 

[theOcean]

Remicade is administered usually once every eight weeks, sometimes once every six weeks if the patient needs it. So it can be fairly flexible because of that time. They will often give you benadryl or other antihistamines, and possibly steroids with it in case you get an allergic reaction.

I turned out to be very allergic to it and had to be taken off of it, but my allergy symptoms usually manifested about a week after my infusion in the form of eczema, hives, and psoriasis. I think there's a few members on the forum here who know what the more extreme ones are, but your son would also be monitored during the infusion by a nurse in case that happens.

 

[Clash]

If you son was going to be abroad for a longer period of time then it would depend on if your insurance coverage included traveling abroad and if the country he was traveling to accepted it.

My son was on remicade for two years and had no issues. His infusion time was usually around two hours every 6 weeks.

One thing you may want to look into before starting remicade is travel vaccinations as once on remicade you can't receive live vaccines. I'm going to tag Tesscorm as her son traveled abroad while on remicade.

 

[Pink]

Hi Clapton,
Im a mom of an 18 y.o who was diagnosed at age 17, and Dr felt best approach was to begin with Remicade. Our son has been managing fine ( only 3 infusions so far), but he was pretty much symptom free prior to dx, and initially I could not understand why he needed such a heavy medication. We waited 6 months before we started because we hoped it would "disappear" and during such a short period of time we saw disease progression, so we began with remicade. This is a great site to become informed.
Good luck!

 

[Johnnysmom]

I have read that using Remicade early after diagnosis can actually alter the disease course and result in milder disease in the future. It is also true that your best chance at remission is to treat the disease in it's milder stages. If things are allowed to get worse, remission is harder to achieve. Our GI also told us that perianal disease is the most challenging to deal with. These are difficult decisions with seemingly no great choices, but you have gotten some great advice so far

 

[Juuh]

I started Azathioprine not long after I was diagnosed. It kept things under control but lead to necessary and elected surgery. After that my crohns showed some signs of getting worse and I had Remicade. I was 31 at the time. Remi almost healed my colon and got me into remission. At that time my doctors did not want me to stay too long on it but nowadays it seems to be different. All I can say is go for it, I wish I had it sooner, maybe it could have saved me from surgery and altered the course of this disease. Now I am on Humira.

 

[Tesscorm]

Hi Clapton,

My son was diagnosed just before turning 17. He has been on remicade for just over a year now with no problems. I have read that treating crohns with remicade (or any biologic??) as the first treatment and within a couple of years of diagnosis does allow the best chance of success (in achieving remission and the course of the disease in the future).

For the first two years after my son's diagnosis, his only treatment was exclusive enteral nutrition (6 weeks of liquid diet only) and then supplemental enteral nutrition. So, while we didn't do an 'instant' top down approach, remicade is his first drug treatment (other than nexium, an antacid).

No question the risks, etc. are scary and I don't think any parent ever feels good about agreeing to give their child these meds, however, untreated or undertreated crohns also has significant risks. I would have liked to try LDN (not necessarily an 'alternative' treatment but definitely an untraditional one) but my son's GI was adamant that remicade was necessary and would significantly reduce the risk of future surgery. As my son was then 18, he was more concerned about the risk of surgery and undertreated crohns. I made sure I explained the pros and cons of either method to my son but felt that, at his age, he had to make the final decision. There is no right or wrong answer. You need to make the best decision you can with the information available to you. By the way, as with your son, my son felt great, looked good, etc. - not easy to agree to give these meds when you can't "see" the need.

As far as going away to school, my son is just completing his first year away from home (2 hours drive). (We are also in Ontario. ) All went well during the year, I arranged his infusions for Saturdays and he'd come home for that weekend. The service providing remicade is very helpful and, when there was an instance when a Saturday apptmt was not available, they arranged to move that one infusion to a centre near his school.

As far as travelling abroad - I'm not sure if you mean for school or longer duration exchange programs or just vacation travel??? As far as vacation travel, my son has travelled to Dominican Republic since being on remicade with no problem. However, I don't know what would need to be arranged if it was a long term trip.

Scheduling is something to consider, however. You do not have lots of flexibility when on your remicade schedule, whether it be a 8, 6, 5 or 4 week infusion schedule. To a degree, you do need to work around this schedule when planning vacations, etc. I don't have any experience with Humira, but Humira is another biologic with which you give yourself injections every one or two weeks instead of needing to go to an infusion centre - this would be more accommodating. However (and, you will come to find, there are always 'howevers' with crohns!! :ymad, Humira is apparently a painful injection and remicade may be more effective with perianal disease???

Good luck!

 

[my little penguin]

Dis was dx at age 7. He is 10 now. He started remicade by age 8 after a year of failing the other drugs.
He is now on Humira.
Remicade worked the best for him -humira took a little longer .
Even in the lower elementary grades ( ie tons of colds and germy kids).
No real side effects from remicade.
DS took it every six weeks for a while .

Good luck

 

[Clapton]

Thank you for all your replys. I now have a better understanding of all this information and why it may be necessary.
I have been on other forums but this one seems to be perfect!!!
We have a Drs apt today so I may have more questions later .

 

[Maya142]

Hi and welcome!
My daughter was also diagnosed at 17 and was put on Remicade right away. Her Crohn's is in remission about a year later - her last colonoscopy and pillcam looked great! I'm very glad that he doctor used the "top down" approach.
Check you the parents forum when you have time. There are plenty of kids there doing great on Remicade.
Good luck!

 

[Clapton]

So... We just got back from Drs apt and I think I'm more confused then before. Doc still thinks Remicade is the way to go but wants to add imuran or methatatrexade (in low dosage ). My sons question was if I feel good can we start with something more convenient like a pill then when it gets ,worse go to the Remicade. I understand where my son is coming from and his thought process.
I think the reality of this diagnosis sank in today and he's getting scared about how this is really going to effect his life . As his mom I want the best for him.
Any thoughts as a parent or a teenager on how you first felt?

 

[AJC - Australia]

that is a tough one, as usually they say remicade works better in conjunction with imuran or methotrexate….and i get that he wants to take a pill and not have to go to hospital every 8 weeks.
Remicade seems to start working quite quickly, whereas methotrexate and imuran can take months to have any effect. If you take a good look at the blood inflammatory markers and take a spapshot of his health now and then check it in a month…if it hasnt settled with cortisone and other pills, then bad straight onto the remicade.
It really depends how sick he is.
when i started on remicade i was very very sick.

good luck

 

[blackli]

I Hope it all goes well for your son, I can't offer any advice as I haven't taken remicade and wasn't diagnosed until my mid thirties. My concern for him though is travelling with this disease, and ensuring he can get complete health insurance for out of country. My GI has warned me many times not to travel as ending up in a hospital in a 3rd world country with crohns can be very scary, not to mention your insurance company likely denying any coverage for a pre-existing condition.... Please check it out carefully before he goes far from home.

 

[Maya142]

Some doctors like to add Imuran or Methotrexate to prevent the formation of antibodies to Remicade, so that Remicade works longer. There's also some evidence that the combination of the two drugs works better than just Remicade alone.
The Remicade infusions are very easy although they are a bit inconvenient. They usually take 2.5 to 3 hours and my daughter would nap or watch movies during them. They're usually every 8 weeks but often kids go more frequently (my daughter went every 4-5 weeks). My daughter preferred the infusions to the weekly shots of Humira but every kid is different.
The diagnosis itself takes some getting used to - in our case my daughter had already been diagnosed with juvenile arthritis, so we were shocked that she now had two diseases to deal with! It takes a while to find your new "normal" but it does happen.

 

[theOcean]

So... We just got back from Drs apt and I think I'm more confused then before. Doc still thinks Remicade is the way to go but wants to add imuran or methatatrexade (in low dosage ). My sons question was if I feel good can we start with something more convenient like a pill then when it gets ,worse go to the Remicade. I understand where my son is coming from and his thought process.
I think the reality of this diagnosis sank in today and he's getting scared about how this is really going to effect his life . As his mom I want the best for him.
Any thoughts as a parent or a teenager on how you first felt?

Because of the nature of Crohn's, when we're really sick we don't absorb food, let alone pills properly. So Remicade would probably be the most effective thing for him right now, since it bypasses that as an infusion. Being put on Remicade in combination with Imuran or Methetrexate is pretty normal.

It really won't affect his life, though! As long as he gets the right treatment. I'm on Humira, where I inject myself once a week, and I'm doing so well from it that I'm able to do everything I was able to do before. I don't feel like I'm sick or held back by anything at all!

 

[Tesscorm]

It does take a bit of time to adjust to this 'new' world, the fear of the 'unknown' is probably the worst. :ghug: But, you and your son will adjust and, once in remission and in a routine, it shouldn't have much of an impact on his life. But, unfortunately, there will be some adjustments.

I think my son was like yours in that it actually took a bit before it really sank in that this was something that would always be a factor in his life (not necessarily a huge one though!).

The combination treatment is probably as was said above - there are higher success rates when imuran or methotrexate are used and it also helps prevent your son from developing antibodies. If your body develops antibodies to the remicade, it will become less effective and may cause your son to have an allergic reaction.

Other than the infusions, my son really gives little thought to crohns. He goes to school, plays hockey and soccer, go to clubs, parties, works out at the gym, eats junk food, etc. All the typical 19 year old stuff. The scheduling of the infusions does sometimes annoy him but, for the most part, it's two hours every six weeks - not a huge inconvenience really. When he's there, he typically sleeps or takes his ipad with him. At the beginning, you will also have more frequent doctor appointments and testing - this also annoyed my son that he had to take time off school/work so often but, again, as time passes, the appointments/testing become less frequent, ie he is seeing his GI in May, his last apptmt was last August.

My son has never been on imuran or methotrexate but I do know there will be some frequent bloodwork at the beginning to ensure his body is able to metabolize the medication properly.

My son also drinks 1-2 Boost shakes every day. The shakes are more easily absorbed than regular food and give him necessary nutrients and calories. I've also read a study that showed maintaining supplemental enteral nutrition (nutritional shakes) can help increase remicade's success rate. I believe the study had patients ingesting 1200 calories per day from nutritional shakes - my son doesn't have 1200 cal per day but I do believe the nutrition he's gained from these shakes has helped keep him healthy. There's a subforum under Treatment for Enteral Nutrition and you'll find tons of info on EN in the Parents' subforum.

It can all seem overwhelming at the beginning but, the more you learn and become familiar with the terms and treatments, it will all become easier.

:ghug: