Remicade risks

[micheleinnewjersey]

My Son was diagnosed with Crohn's in January '12 after going undiagnosed for a few years. His doctor immediately put him on Remicade Transfusions and Pentasa. He has had 3 Remicade Transfusions and he is on Pentasa 3000 mg daily.

I have recently read about the risks that Remicade carries (rare Lymphoma Cancer). This is causing some anxiety and would like to hear from some other Moms.... I have a call out to the doctor to discuss.

Would love to hear your thoughts!

 

[Kat]

Our story is quite the same. Our daughter was diagnosed in Dec 2010 - looking back there were small signs for at least 3 years. She immediately started on Prednisone (only for 2 months), Pentasa and Remicade. There are risks with Remicade and from the research I did, but they seem to be very rare. The Remicade has been her miracle drug. Her remission started almost immediately and she is back to being a happy teenage girl, playing soccer, running with friends and driving me crazy! Good Luck to your son!

kathleen

 

[Clash]

My son was recently diagnosed, also. It was a hard decision that each parent must weigh out. I did do alot of research and the risks are rare. There are several threads on this forum that gives you the numbers. My son was on prednisone first and it did not help at all. He is really improving on Remicade and we are hoping it continues to be a drug that works for him. I hope that your son improves and you can make peace with whatever med you finally decide on. I do know the worry and anxiety that you feel, it seems you go straight from diagnosis to decisions and there isn't alot of time to wrap your mind around it all.

 

[Jenn]

I agree, so scary! But, untreated disease is riskier. It is really rare, but I think there's some issue with Remicade in combination with 6MP and/or Methotrexate. Definitely worth talking your fears out with your GI or the nurse.

 

[Clash]

Jenn- that is also how it was explained to me, 6mp/imuran with Remi and the two in the study not listed on 6mp or Imuran the GI explained it wasn't that they weren't on them just they didn't have a report on it.

 

[Sascot]

We haven't been on Remicade so no words of wisdom there. I know how you feel - there is a risk of cancer with Azathioprine which my son has just started. It still feels so wrong to me to give him it, but he needs to get the Crohn's into remission and this is the GI's best advice. We can only try and trust they know what they are doing. Good luck hope it works well!

 

[crohnsinct]

Hi from another IVleague mom.

My daughter is also on Remicade. Started 2/12 and I had all the same thoughts.

Yes, there are risks and the risks are higher when adding Azathioprine and maybe some others (but not Pentasa) but they are so much lower than the risk of doing some everyday things ie: dying in a car accident or drowning while swimming etc.

Also as someone else mentioned the risks of untreated disease are so much worse. I think I also read that for boys maybe there is a slightly increased risk?? Definitely try to read the threads on risks and talk it through with your doc or maybe pediatrician for an outside view.

There is a great transcript from a webinar on the CCFA site and someone posted it here somewhere (just can't figure out how to post link yet). Definitely helped me become comfortable with Remi and even adding Aza if we have to.

Good Luck! I hope the Remicade works great for him...so much easier accepting the risks if it is working its magic!

 

[micheleinnewjersey]

I talked with my Son's GI Doctor (from CHOP) today and she assured me that the lymphoma associated with the remicade was rare. She also reminded me that untreated Crohn's carries higher risk for bowel cancer. She told me that I should feel good knowing that they are always looking for better less riskier drugs to treat Chrohn's.

I am thinking that the remicade treatment that my Son receives should come with a dose of "Happy Pills" for the crazy worried Moms.

Thanks for all the responses. I really love this site...reminds me that I am not alone in our Chrohn's journey

 

[Jenn]

I'm all in for some happy pills please!

When Remicade took effect for my son, hoo, there was no looking back either! It was so great having my son back to normal for awhile. Hope you also have great results.

 

[Clash]

I'm all in for some happy pills please!

When Remicade took effect for my son, hoo, there was no looking back either! It was so great having my son back to normal for awhile. Hope you also have great results.

Haha I know what you mean, after this second dose he has had such a turn around that it is like Wooohooo no looking back! You want so much for them to feel better and not be in pain, when that happens you can only be happy they are experiencing some degree of normalcy!!!

 

[micheleinnewjersey]

OMG, he is like a new kid. He plays basketball for hours on end. I even think he might start playing sports again. Remicade is really a miracle drug for my son as well.

 

[izzi'smom]

Lol at the happy pills for parents...I think you may be on to something!! Maybe they should come with the IBD diagnosis??
DD was on Remi also...I second all of the above. It's a tough, personal choice (it was worth the risk for us, although the treatment was not successful). I would rather be informed of all of the risks, however minute, than be caught unaware after the fact. :ghug:

 

[crohnsinct]

^^ditto to Izzi's mom...Happy pills along with diagnosis and at home blood tests and the magic to making the fear of the other shoe dropping disappear!!!

O.K. a little jealous but oh so happy that the Remicade is working! Typing with a smile on my face!

 

[Jenn]

should definitely be given to parents at dx! I think they would take care of the shoe drop anxiety too... Would love to do bloodwork at home, but only if *I* don't have to do it. Shots are bad enough, I didn't sign on to be a nurse too.

 

[crohnsinct]

Haha we have a fully furnished apartment attached to our house...hubby says we should hire a GI to live in the apartment and be at my beckon call:biggrin:

 

[micheleinnewjersey]

Your own personal GI...wouldn't that be nice. My daughter, who is only 4, has terrible constipation and is being tested for Celiac's disease. My husband and
I joke :ybatty::ybatty:that we have one child who is always running to the bathroom and the other who can't go. We need our own GI doctor here at this house.

 

[DustyKat]

Hi michele,

No experience with Remi here but loads of experience with treatments and worry! :lol:

This is the link that crohnsinct was referring to...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

...the risk is very, very small and most cases have been associated with combined therapy, so a biologic, like Remicade, and an immunosuppressant, like Imuran. Boys/young males have a greater representation in the affected group.

I have had experience with untreated disease because my daughter was undiagnosed at the time of her emergency surgery. I must point out that the complications my daughter experienced are on the extreme end but we did come so very close to losing her and it is a time that I never wish to revisit again. I think I still have PTSD from it!!! :lol: Yeah, I can laugh now but I was wreck at the time!

There are many treatments out there, some are very safe with little or no side effects and others scare the bejesus out of us. Unfortunately one size doesn't fit all and although we would all love to grab the ones that carry the least risk for many that is not an option. Some are able to take their children down that path but for others they have no choice but to defer to the experts and trust the judgements they make. Is there anything more difficult in this world than making decisions on behalf of the ones we hold so very dear?

At the end of the day hun you do what ya gotta do to get that sweet child of yours back to living the life he wants and deserves and if it is Remicade that weaves the magic then so be it. There are no wrong decisions Mum just different ones.

Good luck!

Dusty. xxx

 

[Farmwife]

Hi and welcome.:smile:

I would give my two cents BUT my cents was spent a long time ago. I think I spent it when the kids came.:lol:
Glad to your here!

:soledance:Farmwife

 

[nani]

My 7 year old grandson just started on Remicade yesterday. Wondering about anything to look for as far as reactions to it. He goes back in 2 weeks for more. So far he seems ok we are all hoping it works. When do you start noticing if it is working?
That Happy Pill should include grandparents too-we are sick with worry!!!1

Nani

 

[crohnsinct]

Aw! I hope it works too! For the most part the serious reactions would occur during the infusion so if he made it through that is good. I can't remember everything they say to call on but they should have given you a list. If not, I would just watch and anything out of the ordinary that is alarming I would call on but at this point any of those things are easy to deal or that is what our doc says anyway.

As for when you will see improvement...that varies from person to person...could be days, could be 3 or 4 infusions. Hard to say. My daughter was on Prednisone at the same time so I am not really sure when the Remi kicked in or if her early response was Prednisone driven.

Good luck and keep us posted.

 

[Clash]

In agreement with crohnsinct, a severe reaction if it is going to happen would be at infusion but if any symptom worries you run it by doc. My son, 15, was on pred before/during start of Remicade but he was not responding to pred so about 1 week after 1st infusion we saw improvement and it has continued to get better with each infusion. With some people it does take 4 or more infusions to see improvement or so doc said. Good luck hope your grandson responds to Remicade quickly!

 

[Johnnysmom]

The only thing I can add here is that from all the studies I have read the Lymphoma was not diagnosed before 3 years of usage with any of the drugs mentioned. So, I plan to revisit use with my son's G.I. before the three year mark. I am hoping it will give me time to look at other options and there are a lot of new drugs in the works.
I was also curious to know if anyone has seen any studies that may have found any indicators for developing lymphoma? For instance low White Blood cell counts or high liver enzymes? My son has had these issues and I am wondering if it increases his chances. I am also wondering if they have lowered the risks in recent years with monitoring blood levels?

I know the worry that goes with this decision. ((((Hugs)))))

 

[DustyKat]

I don't recall reading that blood results affected the chances of developing lymphoma but I have certainly read that in some cases there was a lack of blood monitoring and it was considered a reason for them developing the cancer.

Dusty. xxx

 

[jmckinley]

I can relate to how tough it is to make decisions. My son just had his 4th Remicade infusion yesterday. So far, it is not working and now the Dr wants to add methotrexate and I am having a hard time with adding yet another drug to the mix. I really hate the stress of making (and living with) these choices.

I have also been told and read that the lymphoma risk is small and related to drug combinations especially Remi/6mp. I was also told the risk is more for boys, which is unfortunate for us since we fall in that category. But, I want to believe that the Dr. would not make this recommendation without it being the best solution considering we have been in a flare since November.

I hope that the Remicade works quickly for your son. We haven't had any problems at all with the infusion itself. Best of luck!

 

[crohnsinct]

JMcKinley: I was in your exact same position a month ago. The Metho just seemed a bit extreme to me so I asked about adding Enteral Nutrition to support the Remi and our doc was very supportive. It is excellent nutrition, helps reduce inflammation and encourages mucosal healing. Our doc and I figured if it can't hurt it was definitely worth pursuing.

I would include more but I am running out right now (to the GI as a matter of fact) but take a peek around at the threads (one in parents sub forum called kids on EN). So far I think it is working for my daughter. I will be back to post after the GI.

 

[jmckinley]

crohnsinct: Thank you! I will definitely read up on the EN. I just hate to add another medication to the regimen. I just don't know what it will do down the road. I actually thought he was doing better until we got the bloodwork back. It was a surprise that the inflammation was high.

And to complicate things, he has ear surgery planned in 3 weeks. I don't want to risk an infection. I plan to call the GI tomorrow to try to postpone the metho until after surgery and maybe he would agree to EN until then.

 

[crohnsinct]

Sending positive EN vibes your way and hoping doc is receptive. I also hate to add more drugs and want to keep them in my back pocket as long as possible for use down the road if we need them.

Sorry I haven't posted more about EN but busy preparing for my older daughter's graduation. If you have any questions let me know. OUr doc is using EN indefinitely...using it to help achieve remission (I'll let you know when we get there) and then letting her go Remi only until symptoms start up again then hop back on EN. It could be used long term so may be no need to ever add Metho!

 

[jmckinley]

Thanks Crohnsinct! At our last appt, the Dr said "the U.S. is the only country that doesn't use EN as a standard for gaining remission". But he didn't offer it either. I guess he was either hinting around for me to ask for it or dismissing it...I don't know. But I will ask!

I read some on your thread. My son is the same as your daughter. I thought he was doing better and I was totally shocked at the bloodwork this week because he seems to be fine. He's thin, not absorbing well...but he's eating like crazy and active like a healthy child, not much in the way of stomache aches, etc.... Stamina, not so much, but he's never had that.

We started an elimination diet about 7 weeks ago with a holistic Dr. We have eliminated corn, wheat, sugar, dairy(only has lactose free milk) from his diet. It is time-consuming, but Ryan says he feels great. I know the bloodwork was discouraging, but I am going to stay the course with the diet for now and try to juice some of his fruits/veggies so they will be easier to /digest/absorb and maybe add some EN to supplement his calories.

I will see Dr in 3 weeks and quiz more on EN therapy ...I can certainly see how giving the gut a break would help healing!

 

[micheleinnewjersey]

@jmckinley, I was interested in your comments about seeing a holistic doctor. Although the remicade is working for my son, I have often wondered if changing his diet would be a good idea too.

How did you find your holistic doctor? Does he specialize in Crohn's? Does your son have any intolerance to dairy or gluten that caused you to look into his diet?

 

[jmckinley]

@Michelle,

The Remi has not started working yet. Ryan has been in a flare since last fall. We started Remi and took Pred for months. 1 week after stopping Pred, his CRP and SED were right back where they started and he was in tremendous pain. Dr put him back on Pred. My husband's Dad was seeing a Holistic Dr for migraines with great results, so we decided to give it a shot.

Ryan has always had lactose issues, but now we think it may be casein/whey problems also. Never had wheat issues, but there's alot of info online about foods that cause inflammation and wheat, sugar, corn are among them. So we have eliminated those. It may/may not work, but I can say he feels better. Even though CRP and SED are high, he has no symptoms (knock on wood). Diet is controllable and not a medicine, so it is definitely worth a shot. Maybe I will start a new thread on our journey. You may find the Dr in with a Chiropractor's practice. That's where ours is located and it's called the "Wellness" clinic. He doesn't specialize in Crohn's but he is well-versed on inflammation in general and familiar with Crohn's. I will warn you, some of the practices are odd, but my son is feeling better, so I am willing to expand my horizons.