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Crohn's Disease Forum » Parents of Kids with IBD » Newly diagnosed-meds advice needed!


10-01-2017, 03:05 PM   #1
Jtb3
 
Join Date: Oct 2017
Newly diagnosed-meds advice needed!

Hi
My 13yr old daughter was just diagnosed with Crohn's a month ago. She was having severe cramping/diarrhea on and off for 2 months. Did blood/stool testing then finally colonoscopy and got diagnosis. They have put her on 50mg of Prednisone for 2-3months and they also wanted her to be taking Pentasa. My problem is Pentasa and any other drug in that "family" at the minimum will cost us $600 a month!! We have insurance. That is our portion. We have tried all the discounts that are out there and even some assistance program but we do not qualify. We are a typical middle class family. So according to their charts we make to much for assistance but according to my budget and bills etc we cannot afford $600 a month for a drug they say she will need for the rest of her life! I have exhausted all efforts. I have spent hours upon hours trying to find a way to get her the meds they say she needs at a price that won't bankrupt us! Anyone else experience something similar? Any advice would be appreciated. I'm at the point I may have to look into a holistic approach because I'm out of ideas. Thanks
10-01-2017, 03:46 PM   #2
my little penguin
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Hugs
First thing to know Pentasa is a 5-asa
It is used primarily in UC
It is NOT FDA approved for Crohns as a monotherapy
It only affects the top most layer of the intestine and does not treat the rest of the layers
Crohns affects the full thickness all layers

Most GI equate giving pentasa to giving aspirin for a brain tumor
Not going to help much and not going to hurt either

Children who get Crohns have more agressive disease

The large majority need immunosuppressants and biologics

Ds was dx st age 7 (he is almost 14 now so 7 years)
He was started on pentasa which he took exactly for one month
If it is going to help
It will help within one month (without steriods )

Ds then was trailed on basically every other drug out there until a year after dx and him not getting better we tried remicade
The difference was phenomenal
Didn't realize just how sick he was until I saw him better

He took pentasa for 1 month
6-mp for 8 months
Mtx for 3 months
Remicade 8 months
Humira over 5 years (with mtx added due to juvenile spondyloarthritis))
Currently started on Stelara and mtx (Aug 2017)

A lot of kids on here are started on pentasa
I know of only one who actually stayed on pentasa only

Might be worth asking about mtx (they no longer recommend 6-mp in kids due to increase lymphoma risk with it )
Mtx is a lot cheaper
Definitely let your GI know about the cost

The GI dept would have social workers
Most states (US) which have a special insurance (Medicaid ) for kids who have diseases like Crohns
Regardless of parent income
It acts as a secondary insurance and covers copays

Tagging optimistic
Een (exclusive enteral nutrition-formula only no food )
Can be used for 6-8 weeks to induce remission without steriods
And then switched to 90%formula 10% food for maintenance

Ds has done een many times and tried 99/10 but it didn't work for him
Een does not work for juvenile spondyloarthritis
So that option is off the table for him

Lots and lots of hugs

The first 1-2 years is scary
But you can get a new normal with the right meds
Granted it may not be the first med you chose or your GI chooses
It will be the med your Dd body chooses

Adding
Lots of natural moms on here
And there is NO HOLISTIC treatment for Crohns

Tagging farmwife

Good luck
__________________
DS - -Crohn's -Stelara
10-01-2017, 04:02 PM   #3
ladyphoenix1010
 
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Join Date: Sep 2017
Location: Eden Prairie, Minnesota
My daughter is 11 and was diagnosed 1 year ago. For the first time ever, we met our insurance deductible and out of pocket max in both 2016 and 2017. I have resigned myself to the reality that we will continue to meet the out of pocket max going forward. So I am planning to open a health savings account for 2018 and every year going forward to save up a minimum of the out of pocket max. Currently for me that is $6500/year for my daughter. And we aren't even doing steroids or anti-inflammatory drugs for her, just exclusive enteral nutrition.

Fortunately my company matches funds I add to my HSA. So that adds $2000/year to my contribution of $4500/year.

Do you live in the US? What kind of insurance options do you have? After chipping away at just over $12k of medical bills the past 2 years, I've realized that I have to be smarter about the choices I make for insurance.

I was able to make payment arrangements with medical institutions for that large chunk of debt. Sadly, I'm not sure if the debt is actually avoidable with a Crohn's diagnosis. Just an MRE and scopes once a year will max us out.


10-01-2017, 04:09 PM   #4
my little penguin
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We also chose the lowest deductible plan
And least out of pocket maximum
Knowing he will max out then he is covered at 100% for the rest of year and only the premiums coming out of my check on a monthly basis
Much easier than a larger bill all at once
Scopes and MRE typically are done at least once a year
And plan on one hospital stay every 2-3 years
For something
Add in blood work and formulas


Formula can be covered through your durable medical equipment clause
(Not pharmacy)
The durable medical equipment company covered by your insurance uses a code for infusion therapy supplies even when the formula is orally (no tube)
Ds has been on formula for 7 years
So something else to look into
10-01-2017, 05:38 PM   #5
Maya142
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I would ask about other medications. As was said about, Pentasa shouldn't be used as a monotherapy for Crohn's. It does work for UC, because in UC just the first layer of the intestine is inflamed. In Crohn's, all layers are inflamed and since Pentasa just targets the top layer, it does not work.

It won't hurt, but it won't help.

I would ask about Methotrexate since that is cheaper and is more effective. It's an immunomodulator.

One step above immunomodulators would be biologics.

Some docs use the "step up" method - they start with the "mildest" meds like Pentasa and work their way up the treatment pyramid. After failing Pentasa, then your child would try something MTX or 6MP based on this method. Biologics would used last.

But the latest thinking is that the "top down" method is more effective since it gets the disease under control quickly and prevent damage to the intestine (narrowing, strictures). Biologics (Remicade, Humira, Stelara, Entyvio) are used first to get the disease under control, sometimes with an immunomodulator. The thinking is that this prevents complications from occurring - like fistulae, abscesses, strictures and reduces the likelihood of your child needing surgery. It also helps a lot with growth and weight gain, and since there is only a small window for that, it's important to get the disease under control quickly.

We used Remicade and Methotrexate once my daughter was diagnosed with Crohn's. It took a couple of infusions, but she began to feel better pretty quickly on Remicade. 8 months later, we redid scopes, and all the ulcers her colon were gone and her colon looked "beautiful."

Biologics are very expensive but there are great assistance programs that help with the cost.

I would talk to your doctor about alternative options - it is not worth paying $600 for a drug that is really unlikely to work for your kiddo's Crohn's.

Good luck!
__________________
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
10-01-2017, 06:37 PM   #6
pdx
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Location: Portland, Oregon

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Big hugs. I can still remember the shock I felt after getting my first $600 bill after my daughter's diagnosis. Up until that point, I had no idea what my insurance covered, since we'd never done much more than well-child visits. It turned out that with that bill, we hit our out-of-pocket max for the year, but I didn't know that at the time and thought that we were going to be paying thousands every year.

So first, make sure that you know all of your deductibles and out-of-pocket maximums for the year. Usually open enrollment for health insurance is around this time of year, so if you don't like the numbers for your current plan, it's worth looking at other options right now if you do have have a choice. Like others said above, it makes sense to pay more for a plan with a low out-of-pocket max. Our OOP max is currently $1000 per person, which my daughter hits in January every year. After that, everything is fully covered for her for the rest of the year.

I also agree that you should ask your GI about methotrexate and/or Remicade, both of which are much more effective than Pentasa for Crohn's. Methotrexate is inexpensive. Remicade is crazy expensive ($9000 every 6 weeks for my daughter right now), but because it is so expensive, the manufacturer will pay your co-pays for you up to $20,000/year, as long as you have some kind of private insurance, regardless of your income.

Good luck. Hope you can figure out a treatment that works well for your daughter and that is covered by your insurance.
__________________
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
10-01-2017, 07:04 PM   #7
Optimistic
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Hi Jtb3. I am sorry about the diagnosis and that is a ridiculous cost!

When my son was first diagnosed I spent weeks up almost all night trying to find a holistic approach that had some proven effectiveness, but there is none. Even for most of the case studies I found, the patients reported improved or no symptoms but were no longer going to drs for tests that track Crohn's. In other words, we don't know what was going on inside them.

You've been given a lot of good advice here. We all question why Pentasa is recommended? What did dr say? Not only is Pentasa not approved and not effective for Crohn's, you might be wasting valuable time in getting her into remission.

I see that she is on steroids. Would she be willing to do the EEN for a month or so while you sort out options for paying for her meds? There has to be a resource in the GI office who can point you some places. There are a lot of threads here on how to make EEN a little easier to deal with. Some kids can get away with 90% formula and others with 80%, but most drs say that if the applecart hasn't tipped it by then that going below 80% will cause problems. My insurance will pay for certain formulas after some training on how to tube feed, regardless of whether the patient is going to drink or use tube. Look into it.

Good luck.
10-01-2017, 07:23 PM   #8
Farmwife
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Hi and welcome.

Have you worked with the social worker at the gi clinic, yet?
What state are you in?
We have special children's insurance thru my state that covers copays, deductibles and such.
We make above poverty level for sure but without this special insurance we would be well below it.

As to holistic approach.......
My girl was only 3 when dx.
We wanted nothing to do with meds.
We went to a world renown holistic doctor (happen to live in our town)
All that we got out of it was dept!
I'm still glad we tried.
I don't regret it but at the end of the day it was about my kids quality of life.
At that point she had none.
So started the search for a meds to work.
We still do EN/EEN after all this time.
That's a great option but most have to pair it with meds to help.

Please asked as many questions as you like.
Hang in there.
__________________
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
10-02-2017, 02:30 PM   #9
Jtb3
 
Join Date: Oct 2017
Hugs
First thing to know Pentasa is a 5-asa
It is used primarily in UC
It is NOT FDA approved for Crohns as a monotherapy
It only affects the top most layer of the intestine and does not treat the rest of the layers
Crohns affects the full thickness all layers

Most GI equate giving pentasa to giving aspirin for a brain tumor
Not going to help much and not going to hurt either

Children who get Crohns have more agressive disease

The large majority need immunosuppressants and biologics

Ds was dx st age 7 (he is almost 14 now so 7 years)
He was started on pentasa which he took exactly for one month
If it is going to help
It will help within one month (without steriods )

Ds then was trailed on basically every other drug out there until a year after dx and him not getting better we tried remicade
The difference was phenomenal
Didn't realize just how sick he was until I saw him better

He took pentasa for 1 month
6-mp for 8 months
Mtx for 3 months
Remicade 8 months
Humira over 5 years (with mtx added due to juvenile spondyloarthritis))
Currently started on Stelara and mtx (Aug 2017)

A lot of kids on here are started on pentasa
I know of only one who actually stayed on pentasa only

Might be worth asking about mtx (they no longer recommend 6-mp in kids due to increase lymphoma risk with it )
Mtx is a lot cheaper
Definitely let your GI know about the cost

The GI dept would have social workers
Most states (US) which have a special insurance (Medicaid ) for kids who have diseases like Crohns
Regardless of parent income
It acts as a secondary insurance and covers copays

Tagging optimistic
Een (exclusive enteral nutrition-formula only no food )
Can be used for 6-8 weeks to induce remission without steriods
And then switched to 90%formula 10% food for maintenance

Ds has done een many times and tried 99/10 but it didn't work for him
Een does not work for juvenile spondyloarthritis
So that option is off the table for him

Lots and lots of hugs

The first 1-2 years is scary
But you can get a new normal with the right meds
Granted it may not be the first med you chose or your GI chooses
It will be the med your Dd body chooses

Adding
Lots of natural moms on here
And there is NO HOLISTIC treatment for Crohns

Tagging farmwife

Good luck
Wow!! Tons of info here that I REALLY appreciate! Have to admit I am not to familiar with the lingo so I have been looking things up! I have a call into Dr to find out why he would prescribe Pentasa if it won't work!! We have also tried Asacol which was outrageous also! Never heard of EEN until I read these responses.
Yes we are in the US--Illinois actually
As far as social worker--yep--I have one trying to help and seems to have hit a road block too!
New insurance enrollment in November--hoping for better options but never seems to get better--usually more out of pocket.
Really appreciate the advice given by you all!
I am checking into these things as we speak!
Thanks so much!!

Thanks
10-02-2017, 03:03 PM   #10
my little penguin
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Asacol is a 5-ASA as well
So If that didn't work odds are really against pentasa working
Since it's the same class of drugs
10-03-2017, 03:16 PM   #11
richard1353
 
Join Date: Aug 2017

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Hello,My dear MLP
has Ds switched to 90%formula 10% food for maintenance now? and how long do you want to keep this status? Your meaning is that keeping 90% EEN and 10% food will retain CD in the remission without other medicines' help. Is my understanding right? If I am right, I want to know how long will keep the 90-10 structure for kinds? Of course, the longer the formula has, the better the healthy conditions are. If we want to switch 100% EEN to 90% EEN with 10% food, then switch to 80% and 20%food.
10-03-2017, 03:26 PM   #12
Maya142
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Some kids will stay in remission if they stay on 90% formula 10% food. But it would have to be long-term, because generally as food is added, the child flares.

Some kids are able to do 80% formula, 20 % food while others flare if that much food is added.

It's very individual and often it is trial and error figuring out how much food the kiddo can have.

Generally, EEN is used in the US WITH maintenance medications. EEN induces remission and maintenance meds keep the child in remission.

Some kids are able to do EEN for the long term, others find it very difficult.

In the five years I've been on this forum, I can only think of a handful of kids who have stayed in remission without using meds, only using diet. Optimistic's son comes to mind and there are a few others. Most have used some combination of EN with the SCD - I can't think of a single one that has done EEN long-term - even 90% formula, 10% food.

Maintenance meds could be Methotrexate or 6MP as mentioned above, or a biologic like Remicade/Humira.
10-03-2017, 06:50 PM   #13
my little penguin
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Richard1353

Ds drinks 50% formula and 50% food
And takes medicine
He takes a biologic (Stelara)
And methotrexate for his Crohns

He is not on 90% formula and 10% food

Formula food 90/10 or 80/20 did NOT work for ds without other medicine
10-04-2017, 06:44 AM   #14
richard1353
 
Join Date: Aug 2017

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Thanks very much for your useful recommendations!
My son had the blood test that shows the value of ESR 76(3rd,August) decreased 26(31th, August) and Today only 6. The value of normal range is 0-20. It shows the EEN(last for eight weeks) is a effecitve method to reduce inflammation and retain in remission. Today my wife has a appointment for the capsule endoscopy after two weeks later. Because we can't take the capsule endoscopy in August, the small intestine was found a litte edema in one of part by NMR (Nuclear Magnetic Resonance). So the doctor told us that he was afraid of the capsule probably may be stucked. The condition of small intestine will need to be check at eight weeks due to the end of EEN . But my doctor tells my wife that the colon, large intestine also need to check again. Of course, We need the NMR first check the condition of small intestine. We had the check them in August. I think that the two months interval of check with colonscopy is too small. SO I have two problems.
One problem is that it spends more time in hospital.In China, we must stay in hostipal at least three days for check colonscopy and the capsule endoscopy need two days including preparing works. If you want to have the endoscopy in monday, you must stay in hostipal at last saturday.
The other problem is that the intestine check for children do more harm than good,especailly only invertal two months! As you know, my child has only EEN for eight weeks without any medicines. Maybe the regional inflammation in the colon, large intestine can't heal so quickly.
What do you think about? NEED only capsule endoscopy and colonscopy in December(four months from the first time check) or capsule endoscopy and colonscopy at the same time in middle of October?
Waiting for your suggestions! THANKS AGAIN!

Last edited by richard1353; 10-04-2017 at 11:26 AM.
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