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Crohn's Disease Forum » Parents of Kids with IBD » 16 yr old girl needing to switch from Humira-What to take?


02-07-2013, 06:41 PM   #1
Lilyworm
 
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16 yr old girl needing to switch from Humira-What to take?

Hi parents! I'm new to the forum. I have behcet's and crohn's and my daughter has crohn's. She is needing to switch from Humira (too many side effects after only 10 months) and I'm wondering what you'd recommend? Pentasa does not provide relief and budesone helps but is not a long term option. She has only been diagnosed with crohn's for about a year, so even though I have had the disease for years, the pediatric stuff is quite new to me. Thanks for your help!
02-07-2013, 07:22 PM   #2
Dexky
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What side effects is she having?…Oh and welcome!
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EJ dx w/ Crohn's 12/09
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No more 6mp
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02-08-2013, 01:07 AM   #3
Lilyworm
 
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She has had aseptic meningitis, pneumonia and is now losing her hair. Thanks for the warm welcome and sharing your thoughts. I'm already finding this so helpful.
02-08-2013, 02:20 AM   #4
Thermo
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Has she been tested to use 6MP?
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Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.

http://www.youtube.com/watch?v=PC2VyIxiWmk
02-08-2013, 03:44 AM   #5
Sascot
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Hi and welcome. I am not sure what to recommend as we are only just starting our medication journey. In Scotland they start with Aza or 6mp then the next step is Methotrexate then Remicade. We are just starting 6mp.
LDN is something worth considering if her GI is willing to try it. There are a few kids on here that take it and it has less side effects than some of the others. Good luck with the choice!
02-08-2013, 08:25 AM   #6
Crohn's Mom
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Hi Lily and welcome !

Has the doctor recommended trying Remicade ?
Or Imuran / 6mp ?
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02-08-2013, 05:57 PM   #7
Lilyworm
 
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Wow, you guys are fast and so informative! We are seeing the gastroenterologist next week, and he suggested (by phone) that we look into all the other options and discuss at that time. I'm not sure what he will recomend, but I've been concerned about the increased risk of cancer from many of these meds. I'm currently taking humira every week and 150mg of Azathiopprine for my two autoimmune disorders, and am tolerating them fairly well with side effects I can live with. Here it seems (as opposed to Scotland--or at least in our GI's office), they start with the biologics and move to the immunomodulators. I did well on remicade for several years, so that might be a good option for my daughter, although she is allergic to rats and the fact that the med is made from rat proteins makes me nervous. Yes--she has been tested for AZ use and apparently she can use it. Cimzia apparently is not approved for anyone under 18. So... any reasons why methotrexate, 6MP or Remicade would be better than the others? Any reason we should avoid one or the other?

And I am so excited by the info I am finding on this forum about LDN! I tried it with my son with autism a few years ago and he did not receive any benefit, but I had no idea it was used for crohn's! I cant tell you how helpful that information is! Just as an aside, I am looking into trying helminthic therapy. I am not eligible for a local study because I am taking humira, but if someday I have the funds to try it and my health improves, my daughter will soon follow. That's a lot of "if"s, of course...In the meantime, keep the info coming. It is really helpful! Also--a general question: how do I ensure that those of you that responded to me before will see my replies?
02-08-2013, 07:51 PM   #8
my little penguin
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If she is allergic to rats then its contraindicated for her to receive remicade per
http://www.question.com/drugs/remicade.html
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02-08-2013, 08:04 PM   #9
CarolinAlaska
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I am new here, so can't reply to your original question. Regarding the question of whether someone will see your replies, I can answer that. When someone writes on a thread, they "subscribe" to that thread. Future replies to that thread by anyone will show up in their "My Forum" listing that is at the top of the main page of the forum. As long as they keep following it, they will see the replies.
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Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
02-08-2013, 08:36 PM   #10
Dexky
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So... any reasons why methotrexate, 6MP or Remicade would be better than the others? Any reason we should avoid one or the other?
It seems the preference often depends on the GI and the country you are in. My son was on 6mp and it's just a pill once a day so that's a positive. Metho is injected but at least you can do it at home like Humira. Everyone for whom any of these meds has worked for is likely to be biased. It seems a roll of the dice sometimes!
02-09-2013, 12:39 AM   #11
Lilyworm
 
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Thanks everybody! Thermo, you mentioned VSL#3. What is that?
02-09-2013, 12:42 AM   #12
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Remicade is a drug to look into... Or 6 mp. But remicade worked for me
02-09-2013, 02:19 AM   #13
Patricia56
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It's clear you are not in the US but you don't say where you are which might help me know better whether some options are not available to you.

So your daughter was immediately put on Humira? Usually this means that she presented with severe disease or severe growth failure and malnutrition. Is that the case?

Ignoring the side effects for now, is she in remission on the Humira or still having Crohn's symptoms? If she is in remission then it would seem logical to look at the other biologics although there is no guarantee she would get the same results from another one - including side effects. On the other hand if she is in very good remission with mucosal healing it makes sense to step down to AZA or MTX and see if that maintains her remission.

An interim measure is always to go to enteral nutrition or EEN. This would mean she would drink formula - can be OTC like Ensure or Boost or prescription formula - instead of eating regular food. This has a very high success rate in bringing kids into remission. Unfortunately it doesn't keep them there for long and it is now often used to improve nutrition and induce remission until medication like AZA can become effective.

There are many differences between these different meds depending on what you mean.

AZA and MTX affect one part of the immune system while the biologics - humia, remicade, cimzia and a couple others, affect a different part of the system. Thats one reason a lot of people need both kinds of meds - they need both parts suppressed.

AZA is given orally and requires many blood tests for the first several months after you start it and then every 3 monhts after that. AZA takes about 4 months to kick in so you have to wait quite a while to know if it is working.

MTX iis usually given by injection once a week at home - you would do it. It can be taken orally but most GI's won't do this because of concerns about poor absorption.

LDN is an option if the GI will prescribe it. There is very limited data from a couple small studies that appear promising. But many GI's will not prescribe it yet and it would be an "off label" use so insurance companies will usually not pay for it because it isn't approved for this use.

Two meds that are not often used due to side effect concerns are thalidomide and tacrolimus.

Really the person whose opinion should carry the most weight is her GI doctor. Hopefully he is a good doctor who you can trust and who will provide solid guidance.
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Dxd age 10, 2006 after nearly 1 year of active sx
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Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 02-09-2013 at 03:05 PM.
02-09-2013, 03:01 PM   #14
Patricia56
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I forgot to say that MTX also requires regular blood tests when you are first starting. How many/often varies by doctor but usually it would be at least every 2 weeks for the first 2 months similar to AZA.

MTX usually begins to work within 6 weeks but can take longer.

Which one will work for your child? Only way to know is trial and error which is frustrating and time consuming. Many children, studies say as high as 80%, get into remission on EEN. Sometimes they stay in remission after that but most appear to need maintenance medication to stay in remission.

Children who present with severe disease or growth failure and/or malnutrition will frequently require biologic meds to stay in remission and may need multiple meds as I mentioned before.

All the best.
04-02-2013, 01:02 PM   #15
Lilyworm
 
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Hi all,

You guys really helped us make the decision to try azathioprine. So far it hasnt seemed to help, but shes only been on it a month and you mentioned it takes a while to kick in. I am wondering if something she is experiencing now is a side effect of AZA or if it is the humira still in her system. With humira, my daughter started losing her head hair. Now her head hair loss has stabilized, but her arms and legs are completely hairless. Is this AZA or humira?
04-05-2013, 01:05 AM   #16
CarolinAlaska
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Interesting question, Lilyworm. Did her extremities lose the hair when she was taking the humira? It may be telangectasia effluvium - you lose your hair in that condition due to stress and then it takes about 3 months for it to grow back again... I'll be interested to read what others say.
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