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Crohn's Disease Forum » General IBD Discussion » Medications to treat Crohn's and the fear I have surrounding the med's!


04-09-2016, 05:07 PM   #1
FranG
 
Join Date: Apr 2016
Location: Florida
Medications to treat Crohn's and the fear I have surrounding the med's!

Thank you first and foremost for allowing me to join this group. So happy to have found it! My son is a newly diagnosed Crohn's patient, almost 15 years of age. Doing well at this point, but is to now begin 6MP and I'm beyond petrified. I've read the side effects and I can't help but cringe and want to run the other direction. How have some of you dealt with this? Will I ever be okay with these med's? It was so difficult wrapping my head around this diagnosis, but I think the medications are getting the better of me! Thank you for any feedback. I really appreciate you and your support.
04-09-2016, 05:18 PM   #2
ronroush7
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Welcome to this group. It is very supportive. I am going to tag clash and my little penguin.
04-09-2016, 05:48 PM   #3
Clash
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Welcome to the forum. My son was dxed at age 15 as well. He was put on remicade straight away due to the severity of his inflammation. He made a 180 turn around right after the first infusion. I was so thankful to have my teen back that there wasn't really time to fear the med.

The thing to remember is that the risks of these side effects are very rare. We allow our kids to take much higher risks for quality of life. I'll tag my little penguin so she can give you some actual statistics to help put it in perspective.

Another thing to remember is that uncontrolled or under controlled CD has a higher probability of leading to scary outcomes. Inflammation that isn't controlled can lead to scar tissue, obstructions, surgeries and the risk is higher for bowel cancer. So, the most important goal is to keep their bowels healthy during these prominent years of growth.

My son will be 20 this year and although he has been asymptomatic for a majority of the time since diagnosis he has never reached remission. He still has active inflammation(that has already required surgery which increases his chances substantially of further surgeries). He has been on remicade, remicade and methotrexate then after surgery humira and methotrexate. Honestly, my biggest fear now is that these meds won't work.

I'm going to tag other parents here

jmrogers4
Mehita
Maya142
Tesscorm
Pdx
Kimmidwife

I'm sure they'll be by with their experiences as well and I hope your son reaches remission soon.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-09-2016, 06:02 PM   #4
Maya142
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Hi and welcome!
I'd check out the parent's forum if I were you -- there are several parents there with teenagers with IBD. CCFA has a great presentation that talks about the risks and the benefits of various IBD medications:http://programs.rmei.com/CCFA139VL/

I can tell you we agonized and agonized about putting our girls on medications, but at some point, the disease became scarier than the meds. They are both on biologics plus immunomodulators - Methotrexate for the older one, and Imuran (similar to 6MP) for the younger one. The difference these medications have made in their quality of life is incredible.

My younger daughter has not had any issues with Imuran - some nausea when increasing the dose, but really no other side effects.

There is a cancer risk, but it is very small. I will say that more and more doctors seem to be using Methotrexate more than 6MP for kids, because 6MP/Imuran are slightly more risky. In my younger daughter's case, she tried Methotrexate but could not tolerate it, so we had to use Imuran.

My younger daughter's last set of scopes showed that all the ulcers in her colon had healed and that there was just some mild inflammation in her small bowel, after 8 months of Remicade and Methotrexate (this was before she started Imuran). In fact, the doctor said her colon looked "beautiful" which she is very proud of .

With untreated Crohn's, the risks of strictures, fistulae, abscesses etc. are high but with medications, the disease can be controlled. And many kids do not have side effects at all with medications. Your child will also be monitored very carefully to make sure he is tolerating 6MP - usually they do weekly or biweekly bloodwork in the beginning.

Good luck with whatever you choose!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-09-2016, 06:40 PM   #5
FranG
 
Join Date: Apr 2016
Location: Florida
Thank you Ron, Clash and Maya. I really do appreciate hearing your stories and how you've dealt in your situations. Clash, I'm thinking of you and your 20 year old son and hoping that the combo of Humira and Methotrexate do the trick. I can imagine your fear. Has he begun this treatment protocol? Maya, you've two children with this condition? Wow! I am happy to hear, however, that they are doing well. Question I have for Clash and Maya, how was it determined that Biologics were the way to go? Clash, you mentioned it had to do with the severity of the inflammation. Our doctor is saying that since my son did not have any fistulas, strictures, granulomas, etc., he believes we can begin with a combo of 6MP and Apriso and see how he does. Feels this could do the trick. He mentioned if not, we could go the Biologics route. Don't get me wrong, if I had insisted on Remicade or Humira for my son, he wouldn't have resisted. I'm just hoping I made the right decision. Hardest decision I've had to make in my whole life. 😢
04-09-2016, 07:05 PM   #6
my little penguin
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Big hugs
Ds has been on them all
He was dx at age 7 and is now 12
My opinion of 5-Asa and 6-mp are jaded
5-Asa are basically like putting a cream on the top layer of the intestine
To stop the inflammation cycle
Sounds great except in crohns the inflammation goes through all layers
Most Gi equate giving 5-Asa the same as giving aspirin to a brain tumor patient
But going to help much but not going to hurt either

6-mp is Ds took for 8 months
We were new and I didn't realize I should expect my kid to be close to normal
I thought sick and exhausted was the best it could be

I can say all the recent studies do not recommend 6-mp or Aza for teenage boys due to increased risk of lyphoma
Most Gi have switched to Mtx instead as immunosuppressants

I can say I prefer biologics over immunosuppressants

Less side effects and more effective in giving Ds normal

Tagging Crohnsinct


Ds is currently on humira and Mtx which after 4 years may not be enough anymore so..,,
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DS - -Crohn's -Stelara
04-09-2016, 07:12 PM   #7
Clash
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My son was put on Humira last march along with the methotrexate he had been taking. In July, his scopes looked pristine but biopsies showed active inflammation. Entocort was added for 3 months and we did another scope in December. The inflammation(that had previously only been present in his terminal ileum at the ileocecal valve that was removed during surgey)was spread from his surgical site in small bowel and throughout his colon. We increased his humira to weekly and will scope again in July.

C had chronic inflammation located at the IC valve, no fistulas or stricturing at diagnosis. The severity was in reference to the chronic level. I can't remember that granulomas were seen at that scope but possibly. C's GI tends to lean more toward methotrexate for young males so we've never tried the thiopurines, 6mp or imuran. The remicade was in an effort to quickly end the inflammation since it can reach full therapeutic efficacy quicker than the immune modulators.

The remicade took care of C's symptoms right away but he had to have the dose adjusted schedule wise and then increased. At that point even though he was symptom free and blood work looked good (lab work is always normal for C) a fecal calprotectin stool test showed his bowel inflammation levels at 1700 (normal was <50 for that lab) so we added methotrexate.

It's hard because C still has no symptoms, although recently he has been anemic. He's a full time college student, works 30+ hours a week and fully immerses himself in college life (haha). Yet, his outside doesn't reflect what's going on one the inside which can make it hard for a teen to see the benefits of iron inusions, supplements, rest and the risks of partying, staying out late etc.
04-09-2016, 07:23 PM   #8
FranG
 
Join Date: Apr 2016
Location: Florida
As far as Remicade and Humira: aren't there also cancer risks involved? More cancer risks involved with 6MP? Appreciate your help! Sounds like to me, Biologics are the way to go hearing from you all! Ohhh boy! Perhaps, I should have gone the Bioogics route. I guess I still could. (He's only taken one tablet of 6MP, does that matter?) Also, if he begins say Remicade, how much longer would he have to remain on Prednisone? Would you happen to know? I could call the doctor on Monday to let him know I've had a change of heart. Ohhh my.....!!!
04-09-2016, 07:25 PM   #9
ronroush7
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The best to you.

04-09-2016, 07:27 PM   #10
crohnsinct
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My older daughter, O, was a happy go lucky girl. For two years there was a little this or that but nothing raised a brow of concern from us or the pediatrician. Then suddenly her first flare. Two weeks later and she was in ICU fighting for her life. Crohn's was apparently doing it's damage silently all along. We came face to face with uncontrolled or undercontrolled disease and it is scary. We were new to the disease and given exactly 10 minutes to approve Remicade. We took it and have never looked back. It has been wonderful for our daughter.

Fast forward to my second daughter's dx. We knew better this time so we were able to control the dx and it wasn't as dramatic. We started her in the moderate drug category...immunomodulators...methotrexate. I am more afraid of the immunomodulator risks than I ever was of the biologics. We have also done EEN twice and used steroids. We have been at this a little over a year and my daughter still isn't in remission. The GI just decided it was time to move to biologics...it wasn't because of severity as much as it was length of time that inflammation has gone undertreated....he doesn't want to let it get a foothold and result in an emergency situation.

Watching symptoms, regular biomarker testing and scopes will let you know when it is time to abandon treatment. Hopefully you won't have to make that decision for a long time.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
04-09-2016, 07:29 PM   #11
my little penguin
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Remicade and humira have a risk of T cell lyphoma when used in combination with immunosuppressants ( 6-mp /Aza or Mtx )
The risk is 6 per 10000 people


The risk for the same thing for average non Ibd person on the street is 2 in 10000


Remicade takes 6 -8 weeks to become effective
Humira 3-4 months
6-mp 3-4 months

Will find the papers in risk of lyphoma for 6-mp

Crohnsinct had a good link
04-09-2016, 07:35 PM   #12
Maya142
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Typically, Remicade kicks in much more quickly than 6MP so it's likely that if he started that, he'd be on Prednisone for less time.

They have found that the cancer risks with biologics were really overblown - they are lower than initially thought. I have to say that of the two classes of medications, biologics scare me less and my girls have tolerated them better. Thiopurines like 6MP and Imuran (my daughter is on Imuran) definitely scare me the most and have an additional skin cancer risk.

Both my girls have juvenile arthritis. The younger one also has IBD. She was diagnosed with IBD after being diagnosed with juvenile arthritis and was already on a biologic that treated the arthritis when she was diagnosed with IBD. So the decision to switch to a biologic that treated both the arthritis and the IBD was fairly easy (particularly since her arthritis wasn't doing well on that medication anyway). Both Remicade and Humira treat both JIA and IBD so she was switched to Remicade and Methotrexate. It was also because her arthritis is fairly aggressive and was under-treated and we watched her get worse and worse. We did not want that to happen with the IBD, so we treated as aggressively as possible.

She did have granulomas on her scope, and inflammation in her colon and terminal ileum. She also has small white ulcers in her colon at diagnosis.

With Remicade, they have infusions usually every 6-8 weeks, after the initial loading doses (though they can be given as frequently as every 4 weeks). My girls did not mind the infusions - they liked missing school and getting a chance to read, nap and watch TV! Blood work can also be done at the infusions, which is very convenient.

Humira is an injection that is given every 2 weeks typically (can be given every week, if necessary). It is painful - the medication really burns, but is very convenient, since you just do it at home. Both my girls preferred Remicade, even though it was less convenient, because the Humira shot hurts.

The other option is Methotrexate - it's an immunomodulator like 6MP, but now seems to recommended more often, especially for teenage boys. It can be given as an injection or orally, as a pill. It's given every week. It does take longer than biologics to kick in usually -- Remicade is probably what would kick in the fastest.

Good luck!
04-09-2016, 07:35 PM   #13
crohnsinct
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FranG: Biologics are a long term commitment. You can't hop on and off them as easily as the other drugs due to the risk of antibody formation. Besides that, most docs use the immunomodulators with the biologics to reduce the risk of antibody formation so I am sorry to say even if you change your mind you will not get rid of the immunomodulator.

Anti tnf therapy actually has not been shown to show any increase in cancer risk.

BTW - Crohn's patient's are at an increased risk for colon cancer to begin with. Under or untreated disease increases that risk. So I say treat, treat, treat.

Now that you have made your decision to go with the immonomodulator I would stick with that for awhile. It just might work! Keep in mind that a forum such as this is not a representative sample of the disease population as a whole. Many of the people here have experienced troubles, set backs, difficulties etc which is why we are here. This is why you may see a lot of us are using biologics. There are many people out there for whom their initial choice of treatment works for many, many years and never have a need to visit a forum such as this or who visit early on and then are off enjoying their life.
04-09-2016, 07:47 PM   #14
crohnsinct
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Will find the papers in risk of lyphoma for 6-mp

Crohnsinct had a good link
I did? Well it is after 8 and you know what that means

Here is one. It isn't very recent but it is comforting.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774869/

I will look for the others.

P.S. my family has a history of bad livers and the mtx and liver risks scares me but the thought of losing a biologic because of antibodies or the thought of seeing my daughter limp around (she had bad joint pain) scares me more.
04-09-2016, 07:52 PM   #15
my little penguin
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http://www.crohnsforum.com/showthrea...t=75063&page=2

Other thread links
Discussing pros and cons

Fwiw Ds did remicade as a monotherapy
He also was on humira as a monotherapy for almost two years only added Mtx for his arthritis
04-09-2016, 07:57 PM   #16
my little penguin
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http://www.crohnsforum.com/showthread.php?t=73927

More discussions on deciding meds
04-09-2016, 07:59 PM   #17
my little penguin
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Discussing 6-mp risks plus Crohnsinct video links
In this thread
04-09-2016, 08:09 PM   #18
crohnsinct
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Here is another link to a video assessing risks and benefits of treatment.

http://www.crohnsforum.com/showthread.php?t=75097
04-09-2016, 11:31 PM   #19
Jmrogers4
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Sorry late to the party, Welcome FranG.
My son is 16 diagnosed at 10. We spent many years on Imuran (sister drug to 6MP), it appeared to be working but he had virtually no growth or weight gain over several years. His lab work was always within normal ranges at 14 1/2 he had not really started puberty was very tiny and looked about 10 years old. We made the decision along with his GI to give remicade a try as something needed to be done. Remicade has been his magic medicine for nearly 2 1/2 years. He felt great immediately and weight gain also started immediately but growth and development although started after about 6 months really took off at the year mark and just enjoying life and so far the stress of the end of junior year of high school has not affected him more than any of his peers.
That being said there are many that Imuran or 6MP is enough to achieve and keep them in remission. My husband being one of them. He has been on Imuran for the last 13-14 years and in remission the fistulas he had at the start are gone. His last scopes in October were pristine.
I think with kids you just have to be ready to make adjustments if something isn't or stops working.
When the meds are working you tend to forget all the scary risks because you have your child back and you see them enjoying life and living for the most part completely normal. Sure he has to go for infusions every 6 weeks, no popcorn or seeds but other than that he doesn't even think about it. I was terrified of biologics but it was really affecting his quality of life to be/appear so different although it wasn't only mental the reason he wasn't growing was even though his labs were normal he had inflammation going on in his small intestines which was affecting his ability to absorb nutrients and possibly causing damage which in time would have most likely led to surgery. While I'm not against surgery if he needs it but I would like to stretch that out to longest amount of time possible.
Good luck and keep us posted
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-10-2016, 01:54 PM   #20
FranG
 
Join Date: Apr 2016
Location: Florida
I want to thank you all so much for your perspectives, info., articles, and more than anything, your support. I'm beyond grateful that I found this sight. At times, I was feeling so alone. Don't get me wrong, I have a great network of supportive people who are there for me and my son which I truly am grateful for. It's just nice to know that besides my son, there are others dealing with the same issue/s (don't get me wrong, I wish none of our children were going through this). I hope as time continues, I'll be able to help others out, as you've done so for me. I hope it's okay to come back here, however, and check in when I'm uncertain about things. JMRogers, thank you so kindly for getting back to me. I am so happy to hear that your husband and son are doing so well. Reading such things gives me considerable hope! I hope you are all having a great weekend! Thank you again, from the bottom of my heart. 😊💓💕
04-10-2016, 11:50 PM   #21
pdx
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I don't have much to add that hasn't been said already, but I wanted to add my support. It's very overwhelming when your child is first diagnosed, and there are so many decisions to be made while you're still trying to learn about it all. It gets easier as time goes on.

This forum is a great place to read, ask questions, and get support, so please do come back and check in as needed. All the subforums are great, but take a look at the "Parents of Kids with IBD" subforum in particular.

I hope that whatever treatment you choose works well for your son!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
04-11-2016, 11:02 AM   #22
Scipio
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Has your son been tested for prior Epstein-Barr Virus (EBV) infection?

Young males on Aza/6mp therapy are at particular risk for hepatosplenic T-Cell lymphoma, a very aggressive and usually fatal form of lymphoma. This cancer most often develops while on aza therapy in conjunction with infection by the Epstein-Barr Virus (EBV). Due to this risk many docs will not prescribe aza for young males, particularly if they have not previously had an EBV infection. The risk is small, but given the deadly outcome of losing that bet, the risk may be too high.

I would discuss this risk carefully with your son's GI.

http://www.cghjournal.org/article/S1...907-9/abstract

Last edited by Scipio; 04-11-2016 at 11:42 AM.
04-11-2016, 07:07 PM   #23
FranG
 
Join Date: Apr 2016
Location: Florida
Thank you Scipio. I would hope that our son's GI would have looked into that before putting him on the medication. I'm looking at recent lab work and see that EBV NUCLEAR AG (EBNA) AB (IgG) value reads 1.06 (H). Does that mean he's had the virus? I tried calling his GI today to discuss this piece with him, but haven't heard back yet! The other two EBV values were negative. I will call his GI again tomorrow. Thank you so much for your input. I really appreciate it.
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