New Here. So scared to put my son on Remicade!

[ColinsMom]

Hi Everyone,

My son was diagnosed with Crohn's at age seven. He is now 13, and we have tried steroids, Pentasa, 6mp, and Colchicine. After a recent MRE and the usual bad results shown in stool and blood tests, the doctors now (First specialist and second opinion doc) say he should go on Remicade.

I am so scared of the worst-case-scenario side-affect: lymphoma! I know the odds against getting a fatal cancer are in my son's favor, but I am so afraid to roll the die because someone in that small percentage of sufferers gets lymphoma!

We have put off the Remicade as long as possible. I guess I would just like some support and some honest info, and hopefully, positive results stories from you. I fell like no one, but another parent of a child with Crohn's could possibly know what I am going through.

I appreciate your thoughts.

Thanks, Hope

 

[Clash]

My son was only dx'ed last year at 15, but due to the severity of his disease we went straight to Remicade. The results were immediate after the first infusion, it was truly awesome since my son had been suffering with the fatigue, tummy pain and joint pain for so long.

Once we finished the loading doses he had trouble maintaining between infusions, the symptoms would return. So the dose was upped and his schedule tweaked but still he would start to have symptoms right before the next infusion. We decided to add methotrexate at the end of last year.

He feels 100% now, and we recently had a fecal calprotectin done and the result was 48, normal range is <50, we were ecstatic!! He is now always on the go like any other teen and doesn't suffer any symptoms.

It was a hard decision each time, when we had to tweak the med, up the dose or add the MTX. But his QOL was non existent and I hoped that these meds would give him a chance to get back to his childhood. I do understand your fears and anxieties and there are times when they still hit me but it has made it a lot easier to come to terms with these decisions when I see him active and happy.

Whatever you decision, I hope your son quickly reaches remission and is feeling better real soon!!

 

[ColinsMom]

Thank you! I appreciate your response and I am glad to hear your son is feeling well!

 

[Clash]

I'm sure others will be along soon with their experiences as well.

Also I wanted to post a link to a great thread in our Parents Forum that has a lot of info

Pediatric IBD, Articles and Research(<--click here)

And a thread that has the experiences parents have shared with Remicade, it has some great real life experience info

Remicade/Infliximab Club(<--click here)

 

[araceli]

Hi CollinsMom, Welcome to the forum. I know is very scary to think about the side effects of drugs, Remicade in this case. I went thru the same feeling, but I choose to give Remicade a try after seeing my daughter's disease progressing. She started to develop perianal disease, and remicade was my only option. It's a very hard choice we as Parents have to make, some kids do great, others get allergic reaction. In our case, everything is fine, so far, she is on remission right now and a happy kid. She has blood tests every time she gets an infusion to make sure everything is ok. I still think about what is going to happen in the future and worry about it. but seeing my kid living a "normal" life now, makes me think I did what I had to do. I wish you the BEST.

 

[Dexky]

Welcome Hope! How has he been the last 6 years? You mention the "usual" bad results from tests. If he's been uncontrolled that long, he is probably running a much higher risk for serious complications than those caused by Remicade. We have no experience with Remi but my son has been on Humira over 2 years. There have been some setbacks but all in all, we'd definitely do it again. I know you live between the proverbial rock and a hard place but you do the best you can for them. Pray, cross your fingers, sit in a corner and rock back and forth...whatever works for you Good luck!!

 

[momoftwinboys]

Hi colinsmom. My son started remicade last October. For him the results were immediate. The day after the infusion he said he had not felt that good in a long time. He is living his life to the fullest and knock wood it continues.
Here is a link to his thread on how he is doing on remicade.
http://www.crohnsforum.com/showthread.php?t=40859
Yes, remicade does have the potential for nasty side effects and that does worry me at times. I really do believe they are making strides in research for this disease. I want him to reach adulthood with a gi track in the best possible shape so when there is a cure he has reached his full potential.
Good luck in whatever you decide. Hope your son feels better soon

 

[my little penguin]

Welcome
We loved remicade . It took three infusions but it was the best DS ever felt.
We almost "forgot" he had Ibd for a while.
He did have to have infusions every 6 weeks at a higher dose but we now know for him that was because his body was reacting. After 8 months he had two allergic reactions so sadly we had to stop the drug.
We had the same fears as you at first . It was very hard on infusion day as a parent but seeing him smile and play and be pain free was worth it.
We are trying to desperately get back there again with humira.
Also as our goal was to keep as much bowel healthy as long as possible since you can live without a large colon but the small bowel can and will become an issue later if left to disease on its own. Undercontroled crohn's can be just as deadly .


Wishing you the best of luck

 

[Tesscorm]

Hi Hope,

We all have the same fears; it's a terrible decision to make! My son started on remicade in Febuary and has had no problems with it.

I absolutely hated to do it and, as was mentioned above, I still have moments of panic when I think about the possible consequences. However, my thoughts were that by allowing crohns to remain 'undertreated', I was, in essence, making the decision to accept the risks that long term continued inflammation might bring.

My son's GI was concerned that, while my son felt good, tests continued to show continung inflammation and this would eventually lead to surgery and other complications.

I try to keep in mind that I accept lots of risks for my children when they simply live a 'normal' life - risks from sports, from teenage drivers, sunburns, etc. and I accept these risks because it improves their QOL. But, a big difference is no one gives me a sheet of stats listing the dangers of hockey or driving each time I let him out of the house! I try to remember that remicade, with it's very small risks, will also bring the QOL he wants and needs!

Hugs... it's not an easy decision! :ghug:

 

[ColinsMom]

Thank you all, for your support and for sharing your stories. I feel better already! Its nice to hear from parents who understand what we are going through. Good luck and good health to all!

 

[crohnsinct]

Hi Hope!

My daughter was dx'd Feb of last year and put straight away onto Remicade and Prednisone. She responded immediately.

For us there was basically no choice. She was hospitalized with her first major flare in the picu but there is a suspicion that the disease was simmering undiagnosed for two years. Mind you there were no symptoms. No stomach pain, no diarrhea, teeny spot of blood every three months or so but so small we didn't think anything of it. The only thing was a lack of vertical growth and a weight plateau. Also an athlete and her times were getting slow and she was looking bad in the water and on the track.

She was dehydrated to the point of her skin and eyes turning yellow, was severely malnourished and had an HGB of 6 when we finally got to the doctor. It only took two weeks of this big flare to put her at this point. The first week, we were thinking bug. The second week were waiting for the appointment. She was admitted as soon as we walked in the docs office and we were told to call our Pastor.

I have seen what unmanaged disease could do and it is a certainty and scary so I was willing to accept the small risk of Remicade.

My daughter is doing fabulously well on Remicade. Like most it took some tweaking and adding other drugs but after the first plunge the rest are easy.

She has grown 5 3/4" and gained 20 pounds. She has returned to her sports and is succeeding on all fronts. She is happy and healthy as can be.

Recently, there was a small complication from the Remicade and discussion of possibly dropping it and I found myself praying to hold on to the very drug I was so scared of. Believe me when you see your child at their best and those tests return well you will love whatever drug is working.

Our doc also says that there are new drugs in the pipeline so this won't be forever. Here's hoping!

I hope this helps and I hope if you decide to go with Remi that it works for your child for a very long time!

Keep us posted!

 

[ColinsMom]

Thank you so much for sharing!

Part of my reluctance is that Colin doesn't seem "that sick." However, test results always show something different, so I know his insides don't match his outsides. His main issues are prolonged periods in the bathroom and tiredness, which affect his quality of life, but haven't seemed severe enough for strong medicines.

I've been reading other forums too, and reading other people's stories is making the decision easier.

Thanks again for your support!

 

[crohnsinct]

Sadly, my daughter looked "fine" until the final two weeks also. This disease is insidious! :voodoo: Makes it even harder to accept that you need to accept these drugs. :hug:

 

[Tesscorm]

Yep, that made it difficult for me too... before and since remicade, my son's looked and felt fine! :ybatty: Tough to justify these meds when you can't SEE the need.

 

[DustyKat]

Hi ColinsMom and :welcome:

We have not been down the Remicade path here as surgery quickly became our only option.

My daughter went undiagnosed for 18 months and only received her diagnosis during emergency surgery. That surgery put her straight into remission and in the ensuing years I often wondered what her life would have been like had she had the opportunity to do medication first. Yes, she is living life to the full and has been in remission for 7 years now but surgery has left its mark.

Then two and half years ago my son was diagnosed. He was diagnosed very quickly and with very few symptoms and as much as it sucked I did not hesitate to go with medications. It was the usual start, Pred and Imuran. I hated the thought of Pred but was not so concerned about Imuran because my daughter was taking it with no issue so it was the devil I knew. We were told that of he did not show convincing objective and clinical markers that he was improving after 6 weeks he would be moved to Humira. My fears about Pred fell off the face of the Earth and were replaced by Humira but that never came as complications set in and as i said surgery quickly became our only option. At that point I would have grabbed the Humira with both hands and gladly. It seems our lives are forever to be destined to be replacing one fear with another! :voodoo:

It really does boil down to risk versus benefit and when these drugs are put on the table in front of us it is hard to see the benefit past the risk and that is only natural. Why wouldn't we hone in on the tiny percentage of serious risk as opposed to the greater majority who have no problem with the drug. After all it is not us that the decision is being made for but the very thing in our lives we love more dearly than all else, our child.

It surely is the hardest of decisions and has been said, made all the harder when you can't see what is going on. But it is an insidious disease and chronic inflammation comes with a whole new set of problems that do have the potential to be no less dangerous and risky than those of the drugs that we use to treat it.

Good luck Mum, I hope all goes well for your lad. :ghug:

Dusty. xxx

 

[Maya142]

Hi Hope,
I'm also new here but just wanted to chime in. My daughter was put on Humira a little over three years ago and is now on Remicade. She has juvenile arthritis (which seems to be becoming ankylosing spondylitis) and Crohns Disease. Her arthritis is quite severe but being on Humira was like a miracle (until it stopped working). I suddenly had a normal teenager again! Remicade has also been miraculous for her joints. It was a difficult decision to make, and I was terrified of the side effects but I can honestly say I have never regretted it. My daughter, despite the painful Humira shots, says it was the best decision we made!

 

[ColinsMom]

Its so comforting to hear your stories. Thank you!