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Crohn's Disease Forum » Parents of Kids with IBD » Medicine Recommendations - No Chemo


01-29-2015, 05:12 PM   #1
Karen M
 
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Medicine Recommendations - No Chemo

My daughter was recently diagnose with IBD, Dr. mentioned Crohns D. but the discharge paper from the hospital states IBD. She was prescribed Prednisone for 8 weeks and Mercaptopurine (6-MP). I noticed that the 6-MP was not letting her sleep and made her feel nauseas so the Dr. decided to stop it. She has chronic constipation and takes Miralax once a day. She is feeling good now, a little pain when she needs to pass gas or poop.
This coming Tuesday is her follow up appointment and Dr. will prescribe a new med. Iím concerned about the medicines, I donít want a chemo med. Any recommendations?

14 year old Girl
Constipated since she was born
No blood in stool (keeping my finger crossed)

Thank you,

Karen
01-29-2015, 05:41 PM   #2
nogutsnoglory
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When you say chemo do you mean methotrexate? Yes, it is chemo but it's a very low dose so it's not at all comparable to chemo for a cancer patient.

Crohn's D is not a term. It's crohns or Ulcerative colitis both of which fall under the umbrella of IBD. Perhaps the dr meant crohns with an emphasis on diarrhea? That doesn't make sense either given the constipation. With IBS they make distinctions between diarrhea and constipation. Maybe he got confused, you can double check.
01-29-2015, 05:49 PM   #3
crohnsinct
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Hi Karen and welcome.

Gosh there is a lot to process at the beginning eh? It takes a lot to come to terms with a med choice and then to have to change course so early on, it is difficult

As you see in my sig, I have two daughters on one of the so called "chemo" drugs. The doses they use for IBD are really very, very small compared to the dose they use in cancer patients. Over time I have had to escalate to the use of this drug. One of the things that has helped me is this presentation that discusses the risks.

http://www.ccfa.org/assets/pdfs/risk...transcript.pdf

It is an excellent presentation and talks about the risks in real numbers.

A lot goes into the decision for meds. Disease location, stricturing, perianal disease etc. What led to your daughter being admitted? What were her symptoms and how did she present? Where is her disease located? Has the doc given you any indication of what he/she is thinking?
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-29-2015, 06:04 PM   #4
Mehita
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I'm guessing the not sleeping bit was probably due more to the prednisone than the 6MP. How did her labs look while on 6MP? The sister drugs, Azathioprine or Imuran, might be worth considering if 6MP was working but had side effects. She might get the same therapeutic effect without the side effects with the others. They're all in the same class of drug.

Like Nogutsnoglory said, methotrexate is sometimes used as a mono therapy or as a "boost" to another therapy, but is such a low dose compared to its use in cancer patients.

The next level up after Aza/6MP/Imuran would be the biologics - Remicade or Humira to start. Remicade is an IV infusion done every 6-8 weeks. The nice thing is it's pretty flexible and no daily pills. Humira is a weekly or bi-weekly injection done at home. Depending on your GI and your daughters symptoms, they may not want to jump to a biologic just yet if they don't have to. There are limited drug options and our kiddos still have their whole lives left with their diseases.

Personally, my son started with Pentasa, then switched to Azathioprine. Neither were strong enough to keep the simmering inflammation at bay so now he's on Remicade and finally doing well. It took a long, long time to figure out which med was best for him.

Good luck... keep us posted on how things go and feel free to ask more questions. There are a lot of caring and experienced parents here.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
01-29-2015, 06:33 PM   #5
Karen M
 
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Thanks for the replies. She had pancreatitis in October 2014. In Novemeber, her GI ordered all kind of testing and Calprotectin was high, so Dr. decided to schedule an outpatient endoscopy/colonoscopy. She was admitted the same day for further testing. They did an endoscopy pillcam and the small intestine is fine. The location is in the Colon. She also had a CT scan after 3 weeks of being on Prednisone and Mercaptopurine 6-MP Ė 50mg. (chemo) and there was no more inflammation in the colon.
Basically I would like to know about medicines and options. Any information on Aminosalicylates or Biologic therapies? Are these also Chemo? Nartural options? Thanks!
01-29-2015, 06:57 PM   #6
my little penguin
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Ok first 6-mp and methotrexate are not chemo
Chemotherapy doses are 500 times or more than what your kiddo was taking .
The risks for Ibd kids has been studied a long time.
The medicines have a proven safety records and are very effective at treating and controlling IBD in kids and adults .
The fact is un-controlled or under controlled Ibd can have devasting consequences including cancer from repeated inflammtory cycles .

I cried when they wanted to put my kiddo on pentasa . I read the possible side effects and cried . That wasn't enough for my kiddo.
Moved on to 6-mp -again thought the same as you -it's a chemo drug -pure panic set in.
I calmed down and read all the studies I could on pediatric IBD treated with 6-mp .
This made me feel better.
6-mp wasn't enough ( it raised his liver enzymes ) so he was moved to methotrexate ( Mtx)
Again another Chemo drug -more panic -had to start reading studies again
Finally almost a year after dx at the ripe old age of 8
DS started remicade ( biologics )
The thing was with each drug change you get the pit in your stomach and worry about starting the drug . You don't realize how sick your kid really is since you see them day in and out . Once you see the drug work and you get your kid back is like a miracle .
The drugs are no longer scary .

Each drug has Potential risks but so do all drugs
Doctors weigh the risks vs benefits
If the benefits are higher than the risk most docs prescribe them.


What lets me sleep at night
Numbers
We take risks every single day with our kids to improve their lives without thinking about it.

Risk of dying for kids in us
By car 1 in 250
By drowning 1 in 1000

The average person on the street without Ibd of T cell lymphoma 2 in 10000

Taking immunosuppresants plus biologics tcell lymphoma risk 6 in 10000

So yes risks are there but they are there for everything we do in life
No one is pointing them out is all

Fwiw my kiddo is now 11 and on Humira plus Mtx
No side effects after 4 years of dx from the meds .
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DS - -Crohn's -Stelara -mtx-IVIG
01-29-2015, 06:57 PM   #7
crohnsinct
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The Aminosalicylates are typically used for more mild disease. I am guessing if your daughter's doc started with 6MP they probably ruled those out as an option. My younger daughter has more mild disease and FWIW her doc ruled them out for her saying they usually do not work in kids. I think because the disease course in children just tends to be a bit more aggressive.

I would check out the treatment subforums for information on all the treatments and I think we have a few "clubs" here in the parents section.

As or "natural"..there is Exclusive Enteral Nutrition. Docs usually use this instead of steroids to handle inflammation. EEN has been shown to be just as effective as steroids if not a tad better because it can induce mucosal healing. The added benefit for a lot of kids who have recently been diagnosed is some good nutrition to facilitate weight gain and growth. Basically the patient gives up food(to varying degrees...our doc says 100% some allow broth, hard candy etc and some may even do 10% of calories from food). They do this for a period of 6-8 weeks an then slowly reintroduce food.

The thing is EEN is typically only effective while you are on it. Once you go off it is only a matter of time before the inflammation returns. For some it is 3 months and for others it could be years. There is no way of telling and by the time you realize it is back it has already started doing it's damage. It is important to manage inflammation in order to decrease risk of surgery. For this reason docs will start a maintenance med (most take a while to get to therapeutic levels) at the same time as the EEN. My younger daughter just started EEN and Methotrexate. My older daughter uses EEN to manage flares while she is on Remicade. Knock wood, we have only had to use it once!

My older daughter has had an excellent 2 1/2 year run (3 total but real good results after 6 months) on Remicade. SO much so I had hoped my younger daughter would also be put on it but her disease wasn't severe enough nor had she failed other treatments.

There is also Low Dose Naltrexone. I don't know a lot about it but if you search the site you will see threads about it and it will give you enough to read that you can then discuss it with your doc. I think the appeal there is less side effects and maybe less risks... paging kimmidwife and jmrogers .

Nutrition...well yeah I am the diet zealot but really only as it relates to supporting meds and I got there after being in Crohn's World for about a year.

Good luck...keep asking questions! Everyone here has btdt and is ready and willing to help!
01-29-2015, 06:58 PM   #8
my little penguin
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Links to pediatruc drugs
And studies found here

http://www.crohnsforum.com/showthread.php?t=43002
01-29-2015, 07:01 PM   #9
crohnsinct
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OOPS! Forgot to say with EEN they give up food but get their nutrition from a formula. Either drink it or from a naso gastric tube. My girls drink/drank theirs. Boost and Ensure. Not so bad. After about a week their taste buds change and "Yum...that was a good shake". Just don't read the can...it will turn your stomach!
01-29-2015, 09:28 PM   #10
Pilgrim
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Thanks for the replies. She had pancreatitis in October 2014.
6-MP and Azathioprine are both similar drugs which can cause an allergic reaction in the pancreas. I would make sure by calling the GI office that her previous pancreatitis has been taken into consideration when choosing the med. I have no idea if she would have an issue again, but I would definitely want to ask that question and just make sure it has been considered.

My daughter is similar to yours in disease location and lack of really obvious symptoms (no frequent diarrhea). She had good response to EEN (the liquid formula diet with no food allowed) although when we would begin to reintroduce food, she would begin to flare and her fecal calprotectin levels were off the charts.

We ended up moving to biologics (she is taking Humira). We are having a good response so far.

It is really hard to weigh the options. We agonized over each treatment we tried, but I really felt we should address the inflammation both for her overall health (her energy levels and the normalcy of her life), and also for the future of her colon.

We are still using partial EN (about 50%+ calories from formula).
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
01-29-2015, 09:43 PM   #11
CrohnsKidMom
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Welcome Karen! My son was dx'd almost 2 yrs ago now. He too, has always suffered from constipation, but his Crohn's is mainly in the jejunum section (middle) of his small intestine.
Sounds like you have just finished up the initial treatment stage-prednisone (or alternatively, EEN). There are a number of maintenance meds, and some GIs start with aza/6mp and work up from there, if need be. Some GIs go straight to the biologics, like Remicade or Humira. My son was started on aza, but he couldn't tolerate it, so we went to methotrexate. He is having good success with it. It is true, that in much higher doses it is used as a chemo treatment. This worried me, but methotrexate is also commonly used to treat arthritis, and maybe other things too, I don't know. So, now I think of it as a med used to treat a number of conditions-from Crohn's to arthritis to cancer. That helps me a bit.
As far as natural treatments and special diets, I would be sure to talk it out with your GI first. Unfortunately, Crohn's is a serious condition requiring serious meds.
It's overwhelming at first, but you will see better days ahead. This forum is a great source of info and support, so visit often. Take care!
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Son diagnosed with Crohn's March 2013, at age 8
01-30-2015, 07:06 AM   #12
DustyKat
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Hi Karen and

Iím so sorry to hear about your lass and that you have found yourself having to make these difficult and heartbreaking decisions.

You have been given fab advice about the drugs so I have nothing I can add there. Just a couple of points to think about thoughÖ

I second what Mehita has said about the cause of the sleepiness, it would most likely have been the Prednisone.

Nausea can be issue for some when starting out on Imuran/6MP but it usually doesnít last long and many are able to overcome it by taking the dose close to bedtime with some supper.

Imuran started out a very long time as a Chemotherapy drug because of its immunosuppressive properties and that was helpful in some cancers, particularly those involving T Lymphocytes. It is a drug that can be used to treat cancer but Imuran, along with 6MP and Methotrexate, are classified as immunosuppressants and their primary role these days is for use in organ transplants, to block rejection, and auto immune diseases.

Pancreatitis: This can be an EIM (Extra Intestinal Manifestation) of IBD. My daughter also suffered with it prior to diagnosis.

Good luck mum and welcome aboard.

Dusty. xxx
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Mum of 2 kids with Crohn's.
01-30-2015, 08:46 AM   #13
DanceMom
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The word "chemo" is a scary word. But so is "surgery", "flare", and "death".....and those are all very real possibilities with untreated IBD. I'm sorry that you are in the position to make such a difficult choice, but know that we are here to support you.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
01-30-2015, 09:09 AM   #14
crohnsinct
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Can I just say your dog us beyond adorable!!!!!!!
01-30-2015, 11:31 AM   #15
Jmrogers4
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Just saw the tag, sorry for the delay. You have been given some great advice so far. My son was diagnosed at 10 he is now 15 and we started with Imuran (sister drug to 6MP) but I knew the Aminosalicylates were not really an option as his father who also has Crohn's started out on those (not a lot of options when he was diagnosed and that was the standard treatment at the time) for the first 8 years or so he had several surgeries and daily symptoms, we thought that was just what life was going to be like having Crohn's. He was switched to Imuran about 13 years ago and has been in remission since then so I had high hopes for Imuran for my son unfortunately after about a year + of messing with dosage he was doing well, not great but well we switched to Methotrexate and he felt great and I thought this is it but he had a reaction to it and we had to stop, we went back to Imuran as we thought he is not bad enough for the biologics and we wanted to save biologics since he was going to have a lifetime of this disease. Again with Imuran he felt well but not great and he wasn't growing or gaining weight so we decided to try LDN (low dose naltrexone) it takes a looong time to be effective and while they say there are no side effects there has not been a lot of studies (if any) done on long term use in pediatrics and it does cross the blood brain barrier so there is an element of unknown. My son was on it for about 18 months and it took about 8 months to reach remission and he was there for about 4 months, felt great was growing and finally started to gain weight with the help of supplemental formula drinks (Peptide) but then he developed c-diff which threw him into a flare which after about 6 more months we were still fighting to get out of. He had fallen off the charts in terms of weight and kept dropping down on height was about 10% (75% before Crohn's) so we decided that maybe biologics were in fact needed (even though they terrified me).
I can say 1/2 through the first infusion we noticed a change, the color started to return to his face and he was starving and wanted to eat (something we had struggled with since dx - lack of appetite). He not only feels great, he feels fantastic. Now I not only hope it works forever, I wish I would not have fought against it for so long. As MLP says the numbers help me sleep but also the fact that he is thriving.
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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
02-01-2015, 11:01 AM   #16
Karen M
 
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Thanks so much for all the responses and support. Greatly appreciated. I will kepp you posted.
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