4 with Crohns in our family....

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Hi,

We have 3 in our immediate family with Crohns - my husband, our daughter and son. Also, my husband's mother has Crohns. She is on Remicade and Prednisone. My husband has been in remission and off of meds for 20 years. He is very aware of what foods bother him and stays away from them. He can only tolerate certain brands of bottled water. But he loves salad and meat for dinner. Our daughter was diagnosed 3 years ago and doesn't like the side effect of the meds - Pentasa and Metronidazol - so she doesn't take them and just feels bad all the time. Our son was diagnosed shortly before his 17th birthday and has an anal fistula. He has been on Pentasa, Metronidazol and Omeprazol. Imuran didn't work. They recently put him on Prednisone and Asacol. He is scheduled to start Remicade soon, but is feeling better lately and finally has an appetite and is eating. He doesn't want to take the Remicade, and we're not sure we want him to either. If he has to be on it for life - He will rack up over $1 million in insurance bills in a little over 30 years - based on estimated Remicade treatments of $5000 each, and probably future prescriptions, not to mention routine medical tests.

Our son wants to be a doctor and had hoped to become a Dr. in the Air Force - but with active Crohns - I don't think that's an option. Although the Doctor is hoping to get him totally off meds except for Remicade and told us he could possibly take a treatment before basic training and one when he gets out of basic training. Could that possibly happen??

Looking for information on breakdown of costs for Remicade. They say we have to drive 3 and 1/2 hours to take treatments at the Infusion Suite in the Hospital. We live in a rural area. I would like to order Remicade from our pharmacist here in town and bring it to the local hospital to have it administered. Anyone have any luck with that? Our local pharmacist says it's about $800 per vial and our son needs 3 vials - He weighs only 130 pounds.

So "HI" to all. Any information would be appreciated.
 
Hi,

We have 3 in our immediate family with Crohns - my husband, our daughter and son. Our daughter was diagnosed 3 years ago and doesn't like the side effect of the meds - Pentasa and Metronidazol - so she doesn't take them. Any information would be appreciated.

How old are your son and daughter? Are there other medicines that your daughter could try which would help her? Welcome it's wonderful that you are here.
 
Wow, I sure hope you have a couple of toilets in your house! Imagine 4 Crohnies all trying to get ready in the morning with one bathroom!

Welcome!
 
Hi my4mack and :welcome:

Whoa, that's a lot to deal with. I'm sorry I can't help with your questions but those with more experience and in the same location will be along soon to help out. I'm assuming you are in the US since you have to pay for the meds? Is that right?

There are many friendly, experienced and knowledgeable people here to offer advice and support.

:hang: and all the best,
Dusty
 
Hi My4, I just wanted to say welcome from another caregiver. I agree with Dallies, especially if your daughter is still a minor. Just dealing with feeling bad all the time doesn't sound like much of an option. I'd say feeling bad w/o doing something about it can only lead to worse problems. Obviously, if she is an adult, you may have less say but you are still her mother so I'm sure she still values your opinion. Good luck!!
 
Hi My4, I just wanted to say welcome from another caregiver. I agree with Dallies, especially if your daughter is still a minor. Just dealing with feeling bad all the time doesn't sound like much of an option. I'd say feeling bad w/o doing something about it can only lead to worse problems. Obviously, if she is an adult, you may have less say but you are still her mother so I'm sure she still values your opinion. Good luck!!

Thanks for your comments everyone. Our daughter is 21 and our son is 17. They are both still on our insurance, but our daughter lives on her own and is working and sometimes going to school. Yes we're in the U.S. and she's still on our insurance.
 
Welcome to the site. :) Hope you can find some of the support you need. :)

...Our son wants to be a doctor and had hoped to become a Dr. in the Air Force - but with active Crohns - I don't think that's an option. Although the Doctor is hoping to get him totally off meds except for Remicade and told us he could possibly take a treatment before basic training and one when he gets out of basic training. Could that possibly happen?? ...

Anything can happen. Some of us our RNs, some of us are physicists, some of us are stock brokers.... and some of us went to school to do these things while we were in active flaring.... For myself, I was fortunate enough to a) live in Canada where a lot of my medical bills were taken care of (ie hospital and doctor visits), b) had parents who had good jobs so I could take my schooling in 6 years rather than 4, and c) because they had good jobs, they had awesome insureance that paid for perscriptions and such.... I feel so bad for the people that don't have these opportunities.... but thank my parents almost every day for allowing me to be able to do the things I wanted to do.

...Looking for information on breakdown of costs for Remicade. They say we have to drive 3 and 1/2 hours to take treatments at the Infusion Suite in the Hospital. We live in a rural area. I would like to order Remicade from our pharmacist here in town and bring it to the local hospital to have it administered. Anyone have any luck with that? Our local pharmacist says it's about $800 per vial and our son needs 3 vials - He weighs only 130 pounds....

Growing up and living in a small rural community, I was able to do just this, as the closest Remi center for me was about 6 hours away. I was lucky enough to know, on a personal level, everyone involved in getting this organised, but I was able to make it happen. My medical insurance covered the cost of the Remi, so that was taken care of, but there is still the expence of time off work, travel, etc.

Talk to your local hospital administrator. If you can get them on board with your idea, your pharmacist should be able to get the Remi in for you.

However, as I mentioned before, I live in Canada, so it may be different in the US.

As far as the medication itself, and it's good and bad effects, check out the Remicade club here in the forums: http://www.crohnsforum.com/showthread.php?t=4544&highlight=remicade ....lots of personal info there on how people dealth with it and whether or not they liked it. :)

I wish you well.
 
I was just wondering if the doc is insisting on Remicade? One of the other self administered biologics, like Humira would be more convienient. Just one shot every two weeks after the initial loading doses.
 
I was told since our son has a fistula and he is 17, that Remicade is the best drug, it's approved for pediatric use. Apparently Humira isn't approved for pediatrics cases yet.

I wish I could get in advance, a breakdown of what they will be charging for Remicade treatments. I estimated $5000 for the treatments, (mother-in-law's bill is $4200 and she's on Medicaid), but I saw it was pre-approved by my insurer for $13,000 treatments!!! I have been waiting a few days for a call back from the billing office for the infusion center to see what it might actually cost. It sounds like the Remistart program will pay $550 of each $600 of Remicade used - but they said it doesn't go towards the anything, except towards the actual Remicade. So I'm not sure what I will need to pay for - insurance said they would pay 80% of covered costs.

Maybe I'm crazy, but we live 2 houses from our rural hospital. Could we get the Remicade from our local pharmacy for $2400 (cost for the doseage our son needs - quoted to me by the pharmacist). And have a home health care nurse come over to administer it? If he has a reaction or something we could be at the emergency room in 1 minute if we drive and 2 minutes if we walk. As it is now, we will have to go up the night before, or leave at 4 a.m. to get to the infusion center, and once school starts, he would be missing a day every two months for the infusion. He's normally a straight A student at school, so I would like him to miss the least amount of school, if possible. What do you all think?

Should I continue to try to do price comparisons and try to get the hospital here to see if they could administer it? Our primary Dr. said they have less than a dozen patients around here on Remicade, and no pediatrics cases. Or, should I see if I get a home health care nurse to come to our home and administer the drugs I pick up from the pharmacy.? Or should I go to the big city hospital with the infusion suite and expect to be billed $13,000.

What do you think?

Honestly, I am still very nervous about giving my son "mouse proteins" and not knowing the long term results of Remicade. Maybe this stupid fistula will heal on it's own. He's only been diagnosed with Crohns for 8 months, and just started Asacol (?) 2 days ago, Prednisone - 3 weeks ago and has so far been feeling a lot better. He is also gaining muscle mass and having better color since he started taking Reliv nutritional supplements - Doctor said they were good to take, but not a cure for Crohns (I already knew that). Can we wait a little longer to start REmicade. It just seems so.... final.....so expensive. Once you're on it you're on it the rest of your life - isn't that right? What does he do when he's 50 and his insurance has spent over $1,000,000 on medical benefits for him and he's maxed out as far as benefits and is uninsurable? Will we have Obamacare to take care of him?

Thoughts please...

my4mack
 
HI there, you are in a bind with 4 of family member with this disease. I have two others besides me. An older sister, UC and CD and an older brother UC. So it sure does run in families. We didnt all live in the same house at the time, we were dx'd alot later.

I dont blame you about not wanting your son on Remicade, too bad Humira isnt an opt. In my case and my opinion, I think Humira is not as strong and Human proteins. I was terrible allergic to Remicade. I am assuming Cimzia is not for pediatric use either?

If anyone can stay away from Prednisone, to me it is the cheapest but the worst drug.

Alot of people do well on Imuran or 6mp. I am from Canada and have the best insurance available from my husband's company, so we are lucky. I agree with Silvermoon about the US having to struggle of medical bills and appts. So many people become destitute from this financial problems with the medical system and it stinks.

:hang: you sound like you are doing what you can. Hopefully surgery isnt in the near future yet. You are an amazing lady and must be strong too! Welcome to the forum!

Keep us updated ok?
 
:thumright:Hi all,

Our son is on Remicade, had his first two doses and the next dose will be in a few days. He's gained back about 30 pounds - no problem with his fistula (it's almost gone) and he feels and looks better too. We were able to get the treatments at our local hospital and they are less than $4000 each treatment - including the Dr. cost. We were still working on meeting the deductible, but by the 2nd treatment - we did. And Remistart was approved for about $4400 per year for our family - so that will help some :) I am going to let him go to his Remicade treatment alone next week, but will check on him part ways through. So far, no allergic reaction , a slight fever the first treatment, but no side effects with the 2nd treatment. I hope it continues to work. He's also off the prednisone and some of the acne is going away or diminishing. He is able to focus on normal Senior stuff in high school and not worry if he can keep his food down or have an emergency run to the bathroom - the kids call him Crohns or Captain Crohns - but he takes it all in stride. :farm::frown::mbh::mbh:YAY!!!!
 
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Oh wow, that is so good to hear! It must be such a relief not only to him but to you as well. I so hope the Remicade continues to work for your son for a very, very long time to come.

How is your daughter doing?

All the very best, :)
Dusty
 
Thanks for asking about our daughter :ycool:Our daughter finally went back to the Dr. and is now on ASacol and doing much better as far as Crohns goes....
 
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My pap smear also came back abnormal but my GI says it is just a coincidence, I wonder though
 
It's good to hear your daughter is doing well Crohns wise but my what a worry for you both with the pap smear. I wish you all the luck in the world that proves to be nothing to worry about.

I'm so sorry to hear about your FIL, I hope he isn't in too much pain and is resting comfortably.

Thinking of you all and sending healing (((THOUGHTS))) and (((HUGS))) your way....................

:hug::hug::hug::hug::hug::hug:

@Lulu. It is not uncommon to have a false positive pap smear. Are you having it repeated?

Take care, :)
Dusty
 
I'm glad you came back to tell us your son's success on Remi. I hope it continues for many, many years!!! Hopefully, you can update as positively about your daughter soon!! Good luck!!
 
My pap smear also came back abnormal but my GI says it is just a coincidence, I wonder though

I think he's probably right about it being a coincidence. Abnormal pap smears are usually linked to and infection of the human papillomavirus (HPV) which is caught sexually. It's actually quite common and most people manage to fight the virus off before it can cause too much cell damage that it produces cancer. As far as I'm aware, HPV isn't linked with crohn's, although the body's immune response to getting rid of the virus might be affected by having a low immune system due to drugs taken for crohn's.. but that's just an opinion.

Try not to worry about it too much though. I had an abnormal smear and got treated for it and now I'm fine. The same happened with my cousin and my best friend. :)
 
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