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Crohn's Disease Forum » Parents of Kids with IBD » Daughter being switched to Humira


 
08-03-2016, 03:09 PM   #1
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Daughter being switched to Humira

Normally I'm just a lurker here, but, today I have some concerns and thought you guys may could help. I will give you guys a little info on our story first.

My name is Christy and I have 2 daughters, #1 will be 14 at the end of the month(has been plagued with tummy issues literally from the moment she was born but tests have been ran and she IBS and acid reflux, no Crohn's) and daughter #2 turned 13 yesterday.

#2 Has ALWAYS been a healthy child until she became anemic in August of 2014. They thought it was due to her period which had lasted for 6 months. Well we finally got her stopped but her iron was still low so she was put on 3 iron pills a day. In February of 2015 she had a severe uti and was put on a powerful antibiotic for it. It all went downhill from there. She was hospitalized March 31st for anemia (by a miracle from the Lord they were able to get it up quickly because she needed a bag of blood) and had erythema nodosum on her legs. Stool tests revealed that she had C. Diff(it was an awful case and it took us until November of 2015 to get rid of it) and then scopes revealed Crohn's Disease. She was diagnosed with moderate to severe Crohn's April 8, 2015 at 11 yo. She was in the hospital for 2 weeks (by the end of the year she had been hospitalized 5 times with a total of one month overall spent in the hospital). She was put on a plethora of meds with Pentasa and Azathioprine being the main Crohn's meds. She battled numerous abscesses with one having to be drained during a hospital stay(they aren't inside, they are on her girl parts) and it was finally declared that Azathioprine was no longer effective. Remicade was started in December and the abscesses were gone almost instantly and she was declared to be in remission in June. Things were finally looking up!

Fast forward 7 months. I got a call from the gi letting me know that bloodwork done at the time of the last Remicade injection (7/15/16) showed that she has now started creating an antibody to the Remicade and he said that we would need to start Humira around the end of August or early September. Well, she has already developed an abscess and eczema(something else she had during the flare)has taken her hands over so the doctor said more than likely her body has gotten rid of the Remicade already. She has been put on Cipro, Flagyl and Humira(we aren't sure on the exact date for the Humira but it will be within the next couple of days).

I guess I really don't have a lot of questions so much as I have concerns. Every medicine used is just one more bridge burned and in the world of Crohn's there aren't many bridges. Has anyone else had this happen? What were your results? The doctor said not to worry because there are meds out there and more being studied as we speak and that there is less than a 20% chance she will build an antibody to the Humira. I look at it this way though, she built one to the Remicade. What if it happens again? I just keep praying about it but it's scary.

If you've made it this far, thank you. It really helps having people out there going through the same thing.
08-03-2016, 03:29 PM   #2
Maya142
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Hi and welcome!! But sorry you had to find us.

I'm sorry to hear your daughter has had such a hard time. But I did want to reassure you, plenty of kiddos end up where you have -- on Humira after Remicade either stopped working or they had a reaction to it.

There are options after Humira so do not worry. Cimzia and Simponi are also anti-TNFs (same class of drugs as Remicade and Humira) and then there is Entyvio that is a completely different biologic. There are also many drugs in the pipeline -- Stelara is an IL 12 and 23 inhibitor and should be approved soon.

There is also 6MP and Methotrexate which can be used in combination with Humira. These help prevent the formation of antibodies, so often doctors will use them with anti-TNFs.

My daughters have been on both Remicade and Humira. Both kiddos did well on Remicade and even better on Humira.

Unfortunately, the Humira shot burns. It's quite painful. We used ice before and after the shot and did the shot while watching TV (so they were distracted). We also made sure they had a treat after the shot (usually chocolate). My older daughter is STILL on Humira and has been on it for several years and is doing very well.

She recently switched from the Humira pen (the autoinjector) to syringes and found those less painful.

There are some parents here who add Lidocaine to Humira to make it burn less. I'll tag my little penguin and Clash. I'll also tag Pilgrim since she has a little one on Humira.

My kiddos did not like Humira (they much preferred Remicade, even though the infusions were not so convenient) but they did get used to it and it did work well for both of them, so they put up with the pain. The loading dose (usually 4 shots) is the worst part. After that you usually have 2 shots at week 2 and then 1 shot every two weeks for maintenance.

Good luck!
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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
08-03-2016, 04:44 PM   #3
Clash
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Sorry to hear that she is having issues right now.

My son was on remicade then humira. He built up antibodies to remicade as well but his probably had to do with stopping the remicade for surgery and then a bit afterward for recovery.

He moved on to humira. With remicade and then with humira he was also on methotrexate injections. He never built up antibodies to humira but did find the shot really painful (unlike his methotrexate shot which he has no issues with). The med can burn. Supposedly, a new formula of humira is to be approved soon that is supposed to lower the pH and make the shot less painful. My son tried lidocaine with the shot the synera patches. He also switched to the syringe and found it a little less painful.

He just started stelara since humira didn't help his active disease. Don't fret though, he's a hard case and every med has failed so far. A majority of the parents here that have tried humira with their kids have gotten great results. I hope the same for your girl.
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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
08-03-2016, 05:04 PM   #4
Farmwife
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Hi and welcome
My Grace whose 7 has been through a few drugs in her little life.
Humira nothing for her but Remicade had been great.
She is also on Imuran.
I hope it works well.
Keep us posted.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-03-2016, 05:14 PM   #5
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Hi, sorry to hear about your daughter, I know what is ti have Cdiff, my son also got Cdiff this year in March, and also had anemia a low iron, we are now with iron infusion, as far as antibiotic he was given one round of vancomycin 14 days. Did the test and no more Cdiff but it took him at least 2 months to start making solid stools. My son was on cipro and Flagyl and what I know cipro causes c diff. Is your daughter in cipro now? When you say her Cdiff was until November, did she relapse again with Cdiff? I can not help you with Remicade or Humira we have not gotten there yet, I'm trying other things before getting into Remicade. Hope the Humira works for her.
Son age 17 dx at 6
Lizette
08-03-2016, 05:31 PM   #6
my little penguin
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DS was dx at age 7 and went through all the lower meds less than a year later
Took remicade for 8 months until he had a reaction but it worked well
He started humira right after that and has been on it for 4.5 years
We did add Mtx ( due to developing JSpA )
But otherwise crohns looks good
Good luck with humira

We add lidocaine to the humira syringe to less the pain of humira
A newer formula that is less painful will be out summer2017 in the US
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08-03-2016, 09:05 PM   #7
ashly825
 
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Thank you so much for all of the replies.


It breaks my heart to know that it will hurt her. We are going with the pen because I was afraid that the syringe would be too complicated and would make matters worse. She did absolutely wonderful on the Remicade until her body decided that it no longer liked it.

As far as the C. Diff.She was on clyndamycin for the uti last year and that is what started the cd fiasco. She was placed on Vanc in the hospital because for some reason when she was in the full blown flare her body could not handle the Flagyl. She was on numerous antibiotics last year do to the abscesses and cd.


When I say she didn't get rid of it until November I'm being literal. Every test came back positive. She was on Vanc for nearly 2 months straight at one point and the infectious disease doctors told me that if that didn't get rid of it we would probably be looking at fecal transplant.


Because of her history with cd the doctors automatically give her Vanc or Flagyl now with other antibiotics. Now that she has developed an abscess she started Cipro AND Flagyl today.


She has informed me that she feels like she has cd again so it may be a good thing that they put her on the Flagyl. :/
08-03-2016, 09:10 PM   #8
Maya142
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Some doctors add immunomodulators like Methotrexate and Imuran (Azathioprine) or 6MP to prevent the formation of antibodies, so that Humira will last longer than Remicade did. Since her disease is pretty severe AND you want Humira to last, it might be worth asking about.

We chose the pens at first too. The thing with the pens is that you can't control the rate of the injection, so you're essentially pushing in a burning liquid very fast. My older daughter just switched to syringes this year, because of what parents here told me.

It made a HUGE difference. Both my girls always resisted the syringes, because they didn't want to see the needle, but now my older daughter says she wishes she had used them all along.

If she finds the pens very painful, just know that switching is an option.

My daughters also used Buzzy:https://buzzyhelps.com

It doesn't help a whole lot since it's the medication that burns, but it helps a little. It works better for blood work and less painful shots (like Methotrexate).

Good luck! Let us know how it goes!
08-03-2016, 09:28 PM   #9
my little penguin
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Use a hot pack prior to injection helps a ton
Ds has an epi pen so very aware of the autoinjectors
We started humira with the syringe for that reason
He use to tell me to stop then go then stop etc...
Shots were tricky at first but you get lots of practice

I will say asking kids questions that they have to concentrate and respond does help dull the pain .

The pain is only during the shot so 10 seconds tops
Ds now gets his every 5 days
And has a routine
08-03-2016, 10:07 PM   #10
Tesscorm
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I'm sorry that you've had the need to search out this forum but am glad you've found it. And am so sorry that your daughter has had such a rough go! I do hope humira does the trick for a long time.

MLP - you know I have no experience with humira but I thought I've already read to 'ice' the area before the shot but you said use a hot pack prior to injection. Is this right? Or did you mean to say 'cold' pack??
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-03-2016, 10:11 PM   #11
Maya142
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Someone recently mentioned their kiddo tried a hot pack before the injection (maybe Pilgrim?) and it worked well.

My daughter tried it but prefers ice. But it's worth trying.

It is a painful shot, but kids do get used to it. My two knew they would feel better within a day of their shots so they sort of looked forward to shot day, in a weird way! The dessert/chocolate after the shot didn't hurt either!
08-03-2016, 10:25 PM   #12
my little penguin
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Ds prefers heat for his shot
Got the tip from Pilgrim
But Ds also has started cold induced urticaria so ice isn't permitted even if he wanted it
Might explain why he felt worse after we used cold spray .
( he just found out that is what he has in the end of June )
08-03-2016, 11:48 PM   #13
ashly825
 
Join Date: Dec 2015
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Thank yall so much. Now the new battle is that blue cross won't let our local pharmacy fill the prescription. They told them that a specialty pharmacy would have to do it. When I called blue cross the girl couldn't even tell me where we could get it filled. Does it ever end?
08-04-2016, 04:41 AM   #14
my little penguin
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It's always a specialty pharmacy
The nice thing is they overnight it to your house or anywhere else in the us you happen to be at
Has to be refrigerated though
Call your prescription drug plan number they should be able to tell you who your specialty pharmacy is .
Also call my humira (humira complete- ) to get the copay card
This reduces the copay to about $5 sometimes a few hundred but better than a few thousand
https://m.humiracomplete.com/cost-and-copay

You need the numbers off the copay card to give to the specialty pharmacy
It takes a week or more to process the first prescription
After that you call and get the humira at your door 24/48 hours later
Humira complete also has a free travel kit - get it and sharps container program ( order the container )
08-04-2016, 12:19 PM   #15
Pilgrim
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I love our specialty pharmacy! They are very knowledgeable about this type of medication and very approachable if you need shipping changes or have med questions.
If you use a heat pack before injection to warm the intended area it may help a lot.I would almost say to try it once without it so she knows the difference but probably best to keep her comfortable from the get go. We use the syringe. You can switch if you don't like the pen.
A lot of people will inject on the weekend to have a few days to get over any side effects. My daughter was really tired at the beginning after loading doses. She's been doing this for almost 2 years and I still notice some tiredness on the day after injection.
I hope it works well for her. It's an important growth and development stage for her so if you have to burn through meds to make the most of this time in her life then so be it.
I hope she's doing ok with dealing with it. I am amazed by how strong Crohn's kids are.
08-04-2016, 03:44 PM   #16
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Thank yall so much. Now the new battle is that blue cross won't let our local pharmacy fill the prescription. They told them that a specialty pharmacy would have to do it. When I called blue cross the girl couldn't even tell me where we could get it filled. Does it ever end?
Frequently the insurance will mandate you use a specific speciality pharmacy (increasingly, this is a pharmacy that they own). I've used about 5 different ones due to insurance requirements over the years.

If you have a choice, Diplomat is, in my experience, the best of the bunch. (https://diplomat.is/)
08-05-2016, 10:48 PM   #17
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Thank yall again for the replies and ideas. Her meds arrived today from Prime Specialty Pharmacy and now another hurdle.


I've talked several times to our nurse ambassador this week and she's great, she informed me that the doctor has signed off on everything, now we wait for a nurse to come to our home. The nurse practitioner said that they've had a lot of complaints about Humira not following through on their end with a home nurse.


I've watched the videos and I know what to do. The problem is she won't even let me near her with the practice pen! She freaks out and starts crying. She says it's scary because of the loud "click" and the fact that it's huge. It looks like I'm gonna need a nurse that can talk to her about her concerns.


Pilgrim you are absolutely right, these children amaze me. She is usually very brave. Besides the way the thing looks, she doesn't like that it has to go into her legs or tummy. She's completely fine with getting an iv ran, I guess because that's just normal for her. It's looking like a loooong weekend for us!
08-05-2016, 10:52 PM   #18
Maya142
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Oh poor kiddo. I hope she lets you do the loading dose. The pen is big and it does make a "click." But it's over in 10 seconds or so.

I wish I had better advice. If you do it in a children's hospital, Child Life can help. Seeing a psychologist that has experience with kids with chronic illnesses might also help. It's not a quick fix though.

Switching to the syringe really did help. The syringes look less intimidating, even though you can see the needle. We did the shots in their legs and not their belly.

When all else fails, bribery might work !
08-06-2016, 11:48 AM   #19
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Normally I'm just a lurker here, but, today I have some concerns and thought you guys may could help. I will give you guys a little info on our story first.

My name is Christy and I have 2 daughters, #1 will be 14 at the end of the month(has been plagued with tummy issues literally from the moment she was born but tests have been ran and she IBS and acid reflux, no Crohn's) and daughter #2 turned 13 yesterday.

#2 Has ALWAYS been a healthy child until she became anemic in August of 2014. They thought it was due to her period which had lasted for 6 months. Well we finally got her stopped but her iron was still low so she was put on 3 iron pills a day. In February of 2015 she had a severe uti and was put on a powerful antibiotic for it. It all went downhill from there. She was hospitalized March 31st for anemia (by a miracle from the Lord they were able to get it up quickly because she needed a bag of blood) and had erythema nodosum on her legs. Stool tests revealed that she had C. Diff(it was an awful case and it took us until November of 2015 to get rid of it) and then scopes revealed Crohn's Disease. She was diagnosed with moderate to severe Crohn's April 8, 2015 at 11 yo. She was in the hospital for 2 weeks (by the end of the year she had been hospitalized 5 times with a total of one month overall spent in the hospital). She was put on a plethora of meds with Pentasa and Azathioprine being the main Crohn's meds. She battled numerous abscesses with one having to be drained during a hospital stay(they aren't inside, they are on her girl parts) and it was finally declared that Azathioprine was no longer effective. Remicade was started in December and the abscesses were gone almost instantly and she was declared to be in remission in June. Things were finally looking up!

Fast forward 7 months. I got a call from the gi letting me know that bloodwork done at the time of the last Remicade injection (7/15/16) showed that she has now started creating an antibody to the Remicade and he said that we would need to start Humira around the end of August or early September. Well, she has already developed an abscess and eczema(something else she had during the flare)has taken her hands over so the doctor said more than likely her body has gotten rid of the Remicade already. She has been put on Cipro, Flagyl and Humira(we aren't sure on the exact date for the Humira but it will be within the next couple of days).

I guess I really don't have a lot of questions so much as I have concerns. Every medicine used is just one more bridge burned and in the world of Crohn's there aren't many bridges. Has anyone else had this happen? What were your results? The doctor said not to worry because there are meds out there and more being studied as we speak and that there is less than a 20% chance she will build an antibody to the Humira. I look at it this way though, she built one to the Remicade. What if it happens again? I just keep praying about it but it's scary.

If you've made it this far, thank you. It really helps having people out there going through the same thing.
I'm sorry for everything you are going through. My son was on Humira for 4 years and if I knew more about the real chances of getting some of the side effects from this treatment, he definitely would not have ever been on it. I'm not a dr nor do I suggest that my experience to cloud your judgement, but that medicine didn't help my son at all. During treatment he was still sick, he's 5'10 so it helped with his growth, but being a bit shorter without latent TB is better. It's been a little over a year since he stopped Humira and we are dealing with a huge health crisis, not sure if it is from years of biologics. I'm new here and I am unsure of what I can and cannot say, but I will say really research this medicine. Hope everything goes well.
08-06-2016, 12:28 PM   #20
my little penguin
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I am confused lostinny
Biologics don't cause a person to contract tb
You need to be exposed to it somewhere
They just check for it yearly at least since if you have tb ( latent or otherwise ) then your no longer suppose to be given biologics since the risk becomes much higher than the benefits
If Ds does not have a yearly test his Gi/Rheumo will not give him a new prescription

So was your child dx with latent tb and still kept on biologics ???
Also if the medicine whatever it is ( biologics immunosuppressants etc are working correctly then your child should have not been sick and should have been fairly normal .
I know for us the Gi is always rea ceasing whether the risk vs benefit of the Med is worth
If it's not getting Ds to a good normal place then the doc helps us find another alternative .

I know your child is going through a lot medically right now .
Did they ever figure out if he truly had crohns ( since that was in question last time ) and what the other issues were ?
Hopefully they are coming up with a good plan for him .

Please realize all meds have risks even seemly benign drugs like Tylenol have killed children due to fatal due to allergic reaction , Steven Johnson syndrome and liver failure
But the risks ( small population ) are much lower than the benefits
Which isn't really comforting if your child happens to fall into that small percentage
Since that 1% is someone's child
08-06-2016, 12:45 PM   #21
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My son was on Humira and tested positive on 2 quantiferon gold test. He started INH and continued with Humira at the same time. That combination always made me have a lot of anxiety. I contacted cdc and tb information hotline and was told by GI, chief of infectious disease and health agencies that it was not dangerous to take together. Also the "rn" at Humira said the same. My son would never have got TB if he wasn't taking Humira. Everyone he is around panicked and all got negative test back. He picked it up on subway, hospital, bus or walking down the street. My son has to have more test done, kidney enlarged, liver enlarged and nodule/lesion in his stomach. Humira should not be considered a medicine.
08-06-2016, 01:50 PM   #22
my little penguin
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I think there is a big difference in how different doctors approach things
Our Gi is very conservative and has pulled humira and remicade or 6-mp for far less more than once
If Ds has anything more than a cold it gets stopped
I am sorry that humira did not work for your child and that he is having more tests
That said humira and remicade have worked wonders for the large percentage of folks who use them

Since humira didn't work for your child
Did they confirm he had crohns at all ?
I know that was something out gi was adamant about getting multiple second opinions so that everyone would be on the same page as far as dx and what drug options there are

Tagging Dancemom
Her child was dx with crohns and the meds didn't work very well but the dx was changed
08-06-2016, 02:56 PM   #23
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So I believe I figured out the answer to many questions about being dx. It depends on who is doing the scope, the pathologist and clinical history. One pathologist will see something completely different from his/her training and education. Another might not find the same thing and that goes for the GI's too. CD and IBD are the same thing, one dr says IBD one says Crohn's it is the dr and clinical history. The GI is referring my son to a specialist that treats IBD and other stomach diseases. There is something called open payments data, that page is where you can input your dr's name and it will show whether or not the pharmaceutical companies are paying him or her and if they have shares in the medication being prescribed. The dr that prescribed Humira to my son was being Paid in the 100k's. CCFA is a whole other topic, but they are crooks. Anyone making 600k a year, working less than 35 hours a week, is not looking for a cure. CCFA has to post their tax return and you can find that info out there, as well, the GI specialist are a company not caring doctors. I wanted a second opinion, my son was diagnosed in 2011 with Crohn's, but now seeing an adult GI things changed and there really isn't any answer, my son has an enlarged liver, Crohn's IBD UC IBS and the rest doesn't compare to the crisis and sad reality the future holds. Currently he is having a hard time gaining weight and fatigue. There is a lot going on with him. I blame humira. My son will be going on medical marijuana, it's legal in NY.
08-06-2016, 03:27 PM   #24
Maya142
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Personally, I am just SO grateful Humira and Remicade exist. I trust our doctors and I KNOW my girls needed them. Both have Ankylosing Spondylitis and without them, they would be fused and in wheelchairs. My husband, who has never been on biologics, is fused and has difficulty walking. His kidneys have been nearly destroyed from years of NSAIDs.

Crohn's can be fatal. There are some children here who were in the PICU and were in serious danger before they were put on biologics.

In my opinion, yes, biologics are scary. But the untreated disease is a LOT scarier. You can live without your colon, but you cannot live without your small bowel. It is very important to treat the disease or you risk abscesses, fistulae, strictures and even complications like sepsis.

I have heard of adults staying on biologics with TB. Humira does not "give" your child TB -- it is endemic to NY. Most GIs/rheumatologists do a TB test yearly.

I'm sorry your son is having issues right now. It must be very hard to watch him suffer. But you cannot know where he'd be if you hadn't put him on biologics.

ALL drugs have potential side effects that are scary. They are finding that the cancer scare with biologics was overblown. It's mostly just an increased risk of skin cancer. Kids with immune disorders like arthritis or Crohn's are more likely to get Lymphoma anyway. Untreated inflammation makes cancer more likely too.

Medical marijuana may help with symptoms but there is NO evidence that it helps with disease progression.

Last edited by Maya142; 08-06-2016 at 09:13 PM.
08-06-2016, 03:50 PM   #25
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Coltyn Turner is a teenage boy that has Crohn's Disease and is treated with medical marijuana, he is in full remission. Everyone is different and must seek the appropriate treatment for their needs and what is working the best. I'm a bit bitter atm, I don't mean to come across as rude. My experience with Humira is bad, but I shouldn't push that negativity on others.
08-06-2016, 04:50 PM   #26
ashly825
 
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LostInNY, first I want to say that I am so sorry for what you and your son are going through. I will be praying for him. I too have heard of the benefits of marijuana, particularly cbd oil.


My daughter's doctor has never pushed extreme meds on us. In fact, he only did Imuran and Pentasa for 8 months, in hopes that she wouldn't have to have something more invasive. However, the abscesses refused to clear up and it was at that point that he decided she HAD to have something more. They wouldn't clear up due to the inflammation in her body.

She has been tested for tb and it was negative, but, I believe I will call him Monday and discuss that further before she starts her loading dose.

I will say that I don't trust any doctor right away. I research everything. All too many times money is involved and I don't want my child to be caught in the middle of it so I absolutely see your point of view LINY. I am thankful, though, that we got blessed right off with a wonderful gi that is very caring and knowledgeable.
08-06-2016, 05:34 PM   #27
DustyKat
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Location: New South Wales, Australia
Hi ashley825,

I would just like to give my own personal perspective on things. I understand and appreciate the difficulties so many parentís face when having to make decisions on behalf of their children, I mean really, is there anything harder in this life than having to make such serious health decisions on behalf of someone that you love more dearly than life itself? I think not. And naturally what is born out of that experience is how we feel about the systems that surround us. There is no wrong or right, just our own personal experiences.

I am one of those that came within a whiskers breadth of losing a child to Crohnís. My daughter was undiagnosed at the time and IBD wasnít even on the radar when it came to the process of elimination in finding the cause of her issues. She wasnít a classic presentation and as a result her disease went unchecked for nigh on 18 months, she was finally diagnosed on the operating table during emergency surgery which turned out to be for a ruptured bowel due to Crohnís, her bowel was a mess and so was she.
Am I scared of the drugs used to treat IBD? Hell yes! But I am more scared of what untreated disease can do. If there is any advantage of me having been through that dark and awful time itís that I donít have the same god awful hand wringing when having to make these bloody decisions that so many of you do because I have seen the other side.

Now to brighter things! My daughterís surgery was 10 years ago and she has been in remission ever since.
My son also has Crohnís and he too has had same surgery. He was in remission for 4 years and on Imuran. He flared in the early part of last year and was commenced on Humira in June 2015. It has worked wonderfully well for him, I do think he had a mini flare around March this year, we didnít change anything and all seems to have reverted back to normal. I personally think it was stress related but not all docs agree with that analysis.

So yeah, as far as my son is concerned Humira has worked a charm thus far. I hope with all my heart your daughter has the same success, good luck!

Dusty. xxx
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Mum of 2 kids with Crohn's.
08-07-2016, 06:42 AM   #28
DanceMom
Senior Member
No experience with Humira or Remicade. My daughter was diagnosed with Crohn's and started on Pentasa. It helped some. We added Prednisone and switched to 6mp. She improved tremendously! (Looking back it was the Prednisone and not the 6mp that helped). We had to stop the 6mp shortly after starting due to liver toxicity. Anyway, in our experience the IBD medications didn't help because my daughter didn't actually have IBD. She has a far more rare intestinal disorder that wasn't diagnosed until a few months ago. I always suggest parents get another opinion when the medications aren't working. Maybe that wasn't the right medication. Or maybe Crohn's isn't the right diagnosis.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-08-2016, 09:03 PM   #29
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Dusty, it's great to hear that your daughter has been in remission for so long! And that your son has had great results with the Humira. You're absolutely right, it was either take a chance with biologics or take a chance with the disease. The disease knows no bounds.

DanceMom, they are positive that it's Crohn's. Though we questioned it in the beginning. She had severe colitis and the biopsies came back indeterminate for Crohn's and UC(the biopsies didn't say which it was) but due to the severe inflammation from mouth to anus they knew it was Crohn's. I will say that she had SEVERE c. diff that I'm almost positive she had had for over a month without being diagnosed and I often wondered if that wasn't the cause for all the inflammation. She had always been in great health, only getting strep throat and the occasional ear infection. Then all of a sudden this. My family on both my mom and dad's side has autoimmune disease though so I figure it really is an autoimmune disease.

The reason she can't take the Remicade anymore is because she built an antibody to it. Until that it worked wonders. The Imuran worked pretty good too it's just that it wouldn't completely clear the inflammation.
08-10-2016, 12:59 PM   #30
Jenn
Senior Member
 
Jenn's Avatar
 
Join Date: Jul 2011
Location: San Diego, California
Welcome! My son had similar story, now 4.5 years success on humira. Our insurance requires mail order through specialty pharmacy too. Nurses did loading dose with pen, was awful, so we do syringe, not complicated at all, beyond creep factor. Humira sponsors a home nurse to train you. Good luck!
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (15mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
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