13 year old daughter just diagnosed.

[Harry Callahan]

OK, I'm new here so any help is appreciated. My daughter, her mother and I just learned she (daughter) has CD. With her pediatrician's advise we had taken Kate to the University of Madison's Children's Hospital for test, diagnosis and treatment. The Dr. there put her on Azathioprine and either Prednisone or Entocort if we could afford it.

My question is; is the Extremely expensive (1000 co-pay) Entocort worth it. We really can't afford it, especially if there is not much difference in effectiveness or side effects between Prednisone and Entocort. Any experience here?

Harry:sign0085:

 

[Farmwife]

Sorry to hear about your girl and the money situation. Been there myself.
Ask your GP or his nurse. Sometimes they know of state insurance coverage you can get for chronically ill children. My state of Mi. has it and only found out about because some one here told me about it. Can you take government (Medicaid I think it is) insurance? As far as the med I'm not sure but if you go over to our wonderfull Parents Forum they can tell you more. I know more will be along the way to offer help.
Hang in there!

 

[Angrybird]

Hello and welcome to the forum.

Just to check is the Pred the same cost as the Entocort? Usually I see folks put on the Pred more often and your daughter will need one of these to get the inflammation under control whilst the Aza kicks in which can take up to 3 months. Also I would advise that you ask the doc about a calcium supplement to help protect her bones whilst she is on the steroids. As mentioned above we have a parents forum with a wonderful group of mums and dads so do check this out as well: http://www.crohnsforum.com/forumdisplay.php?f=49.

Please keep us updated on how on you get on.

AB
xx

 

[Johnnysmom]

My son was prescribed Prednisone. We were never offered Entocort. It was literally like a $7 prescription. I wouldn't hesitate to ask your daughter's G.I. and ask a pharmacist. Prednisone worked great for us.

(((((Hugs)))))) to you and your daughter. This is a very hard time, but things will get so much easier. I am glad you have found this forum, it has been a huge help to our family. Let us know what you find out.

 

[my little penguin]

Entercort works in the lower instestine so less is absorbed by the whole body versus pred which goes into every system.
We were not given the option of entercopt since DS has disease in his esophagus to his rectum. So just lowering the inflammation in the bottom would not work for him.
Pred is cheap but does have side effects including Cushing syndrome .
Your child will probably be on pred for many months since Aza does take months to "see" if it will work.
Second looking into medical assistance most of the Ibd drugs and tests are expensive so having a safety net is important.

http://www.allkids.com/hfs8269.html

http://insurance.illinois.gov/healthapp/resources/IllinoisStandardHealthApplication_Individual.pdf

 

[Harry Callahan]

Thanks to all for the information. I see "My Little Penquin" that you list the Illinois medicaid links.

I'm from Illinois so I check there Approved Drug site but did not see any of her prescribed Meds.; Entocort, Azathioprine, or even Prednisone. So even if I could get the All Kids i would have to use an alternative treatment plan?

 

[Sybil Vane]

Everyone has given you a lot of really great advice. I wanted to send my ((hugs)) and let you know that you can call the makers of Entocort directly and see if they can help you. Some drug companies, like Humira, will sign you up for a $5 co-pay plan. If they don't have that option, they might have some advice. It's worth a shot!

Prednisone, though, is super cheap because it's generic. Have you told your daughter's GI that you don't have the funds for that? I'd lay it on the line and say, what else can you offer us? I've had to say that a few times because they love setting up expensive tests. That can really rack up the bills and we all live in the real world.

I am wishing you tons of luck and support!!

 

[Lawyerboy]

Hi Harry. Entocort and prednisone are both steroids. Prednisone however is alot stronger than Entocort and works faster. Therefore, the likelihood for your daughter to get better on Prednisone is greater as compared to Entocort. Prednisone however has more side effects because its so strong.

Entocort never helped me while prednisone always KO'ed my Crohn's into remission.

 

[Harry Callahan]

rder:
Thanks for all the great advice. I'm really impressed with all the response and help I got here and will definately check some of this out. First though let me clear up a few questions. Our GI did informed us that Entocort could have a high co-pay and we could switch to Prednisone if need be. He also informed that the Prednisone would have heavier side effects. Did not go into a lot of detail here so I and Kate's mother have been checking this on the internet. Her mother has not been happy with what we found. As "my little penquin" stated

"Pred is cheap but does have side effects including Cushing syndrome "

We also read the same and quite frankly Cushing Syndrom scared the hell out of us! Wikipedia says:

"associated with prolonged exposure to inappropriately high levels of the hormone cortisol."

Can anyone define; "prolonged exposure" and "inappropriately high levels"?

"Symptoms include rapid weight gain, particularly of the trunk and face with sparing of the limbs (central obesity). A common sign is the growth of fat pads along the collar bone and on the back of the neck (buffalo hump) and a round face often referred to as a "moon face."

That is not the transformation we want to put our 13 year old daughter through. That is not all the sides either. After her mother read this she was ready to take what little money she had in an emergency savings to buy her the Entocort. She has been on it now for just the second day and hasn't had a pain since 8:00 this morning. Her appitite seems better also --not to say that Prednisone wouldn't also work, but very scared of the side effects.

My questions are;

1. Are we overreacting to the possible side effects from Prednisone?
2. Are the side effects perminant or do they go away when you are off it?
3. If they go away how long does it take?
4. Anyone have experiece with these heavier side effects mentioned?

To start with, her GI says she will be on the steroids for 3 months. I will check with the company for assistance.

 

[xmdmom]

Prednisone works quickly and well in many newly diagnosed people with Crohn's. Doctors do not want to keep anyone on prednisone for lengthy or repeated periods of time if they can avoid it because of its side effects. The dose of prednisone is usually started at a high dose but then weaned down over a period of weeks (8 or more) while imuran is starting to work. In a period of weeks, prednisone may have some short term reversible side effects. The side effects vary from person to person. The full Cushings picture would be seen after months at high doses. Your doctor will most likely be lowering the prednisone dose over these 3 months so she will not be on high doses all of that time. Ask him/her about how s/he will wean it. My son had lost 10 pounds before he was diagnosed so prednisone's side effect of increased appetite and weight gain was a plus for him. He gained 15 pounds so he was a little better than before, but then lost 5 lbs off prednisone. He had some sweating and increased energy but nothing else.

1. Are we overreacting to the possible side effects from Prednisone? You're reacting like a parent who is worried about your daughter.

2. Are the side effects perminant or do they go away when you are off it?
They are reversible except for osteoporosis but you shouldn't worry about that with a short course (weeks) of prednisone exc. for taking vit d and calcium supplements.

3. If they go away how long does it take? Most side effects (sleep issues, sweating, increased appetite) when they occur go away as soon as the prednisone is discontinued. Many decrease or go away as soon as the prednisone is lowered. If someone develops Cushing's buffalo hump, etc
that would be because s/he had been on high doses for months or years and then it would take a long time off for that to go away.

4. Anyone have experiece with these heavier side effects mentioned?
I'm sure there are folks on the forum who have had significant side effects from taking steroids for many months or years. Steroids used to be the main treatment of Crohn's in prior years.

 

[Clash]

To answer your questions:

1. Alot of patients are initially placed on pred and have a range of no side effects, to moon face, weight gain, acne, moodiness. My son was on 40 miligrams for a month and a half then started tapering, he was 15 his side effects were moon face, weight gain, acne and an inability to sleep or restlessness.

2. As he tapered off the prednisone all the side effects went away, the weight gain took the longest about a month and a half, it's a swelling look and not true weight so it tends to come off faster than solid weight.

3. His moon face started to go away as we tapered and the weight took longer, the acne was bad, but he already had some acne problems before hand so we ended up going to a derm to take care of that anyway.

4. Being a teenager my son would probably say he had the heavier side effects, but that's perception and appearance is a big deal to teens. He didn't like the ADHD feeling pred gave him more than anything, and this would be his biggest complaint if he had to go back on pred.

All in all C, my son was on steroids for a little over 4 months maybe longer and there was no lasting side effects of the ones he experienced. But pred does can affect your bones so that is one of the many reasons it is not a long term maintenance med but works great on knocking down inflammation initially.

 

[Harry Callahan]

Wow! Great answers ---really appreciate. Helps a lot by just knowing and have relayed some of the info to my daughter, which alleviated some of her fears, and that's the best medicine of all!

I will get on over to the Parents forum and check that out soon. I will update when we I know more.

Thanks to all. :mademyday:

 

[Clash]

I hope she finds relief soon no matter the med you choose. We actually have a prednisone/Entocort thread(<----click here) that you may want to browse through. But alot of the parents in the parents forum have had experience with prednisone so any questions that may arise feel free to ask away.

 

[Hope345]

Harry,
We just found out our then 13 year old daughter had Crohns this year too. It has been a rough year, but we believe she is in remission or almost.

What type or where is your daughters Crohns located?

We had to treat our daughter with 40mg of Prednisone over an 8week period, twice in this last year. Her Crohns was mod/severe and needed to be stopped in its tracks. Prednisone did that, until it was tapered off and then the symptoms of Crohns came back. Predinisone is necessary sometimes. It is a love/hate medicine. Our daughter got all the side effects and we hope not to ever have to use it again.

I believe it was taking our daughter off of lactose and the use of Remicade that has helped put her into remission. She also takes Asacol, which is a mild anti inflammatory.
I hope the Entocort works for your daughter. It was not given to us as an option. You are making great choices for your daughter, she is blessed to have such caring parents.
Please let me know if I can help answer any questions too. Our daughter just turned 14 in November and has Crohns colitis.

 

[Harry Callahan]

What type or where is your daughters Crohns located?

Good question. When she had the endoscopy and colonoscopy the Dr. said he seen some inflammation on the top small intestine which he biopsied. He took a biopsy of the lower also but couldn't see anything (not clean enough). When the results of the biopsy came back the lower was positive for crohn's. He did not mention the top and we forgot to ask. I didn't know until after talking with him last that there were different types. Now I am informed and will ask him next time we see him.

Thanks for all the info from everyone. It is very helpful.:yoshijumpjoy:

 

[my little penguin]

please talk to medical records and get a copy of the pathology report from the scope. ALso start to get copies of the blood test results and and any other tests (CT, MRE etc...) she may have done.
This will help you understand the disease better and in turn help you help her take control of her medical care when she is eighteen.

ALso look into Exclusive eternal nutrition (EEN)-
Most kids in Europe are started on this not pred.
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf

www.medicine.virginia.edu/clinical/...team/nutrition-articles/Gurram April 2012.pdf

http://www.ibdcme.tv/library/ppts/EnteralNutrition.pdf

http://mobileservices.texterity.com...n2/0058_avpxhy.png&folio=60#article_id=166918

IF she has disease in her upper GI tract duodenum then Entocort doesn't really work on the inflammation in that area so ask your GI how they plan to get that inflammation down.
Pred works for the whole body.
EEN is as effective as a course of pred in children.
There are lots of studies on this in europe, canada and AU.
It would mean she would have to be no foods only formula for 6-8 weeks.
VEry doable but hard.
My son did this for 9 weeks.
GI prescribe Peptamen Jr.
MOre links on that in the PArent forum.


http://www.crohnsforum.com/showthread.php?t=36345

 

[Harry Callahan]

Just want to update all the good people that have been so helpful here. We had the MRI done on the 27th of Dec. and were back a couple of days ago for the results and talk with her GI Dr.. He said the small bowel was OK, didn't see any Crohns in the small intestine. The Crohns that was seen was in the large bowel and the stomach. The treatment was to continue with the Entocort, Prilosec and adding Immuron (immune system suppressor) 50mg. / day. She is also taking Iron and vit. D for supplements, which the blood tests showed was the only thing she was short on. Calcium he thought was best supplied through her diet. I ask about the Entocort not working on the top side and he agreed that it doesn't but planned to control the stomach area with the Prilosec and Immuron.

Anyway the good news is that she is feeling a lot better and there was no damage or Crohns in her small intestine. Presently she seems to have a little nausea in the morning after breakfast and sometimes cramps at that time too. We also have not notice any side effects with Entocort mentioned by some with the Prednisone. Also, we found that the co-pays of 1000 / mo. on Entocort would go toward the deductible and once met the insurance would cover it, which for them (BBS) is $200.00. Yes they get a discount from the drug manufacturer. Sounds fair!

:yoshijumpjoy:

 

[Hope345]

good to hear!!!!! I hope all continues to go well and she will soon be in remission.

I am sure with the stomach area, she will always have to be a bit careful what she eats, especially right now.

Blessings to your family. Keep us informed of her progress

 

[Angrybird]

Glad to hear she is improving hun, I will be keeping fingers crossed that this continues for her.

 

[amandaerin]

I was diagnosed at 13 as well, I'm sorry to hear that. I honestly didn't find any real difference between entocort and prednisone.