20 Year Old Male- Crohns

[Mag48]

Hello All,

I just sat down with my doctor for the first time since have both upper and lower procedures (colonoscopy/endoscopy) done two weeks ago. Findings saw many ulcers in both upper and lower system. Even in stomach--which I guess is rare?

My doctor told me I have a pretty serious case of Crohn's as he found the disease throughout my entire system. He is now requesting even further blood test (Have had two prior, one just on Monday) to check my vitamin levels and also wants a CT Scan done before giving me any meds. I go to Northwestern Hospital in Chicago, IL and since it such a large hospital all tests and follow up seems to take weeks if not months. I am still dealing with symptoms daily

We talked about treatment today and is going to recommend Imuran I believe combined with either monthly hospital injections (unsure of medicine name) or Humira at home. I find needles to be absolutely unpleasant and can almost lose sleep thinking about it. I got diagnosed with the right thing I guess to help overcome that fear. Which of the two is more tolerable- the humira pen or the hospital iv injection?



I have blue cross blue shield insurance and am on my parent plan which is pretty good. What costs can one expect for these medicines. Googling Humira costs from initial glance almost made me nauseous even with insurance but I figured I would ask here to see if that is realistic.

Lastly does this seem like a reasonable conclusion from my doctor? From my searches on Crohns it seems oral medicines and things would be tried first.


Right now I kind of feel confused and like my life fell into shambles!

Have a great day,

Michael

 

[KWalker]

Welcome! I believe the hospital IV your talking about is Remicade. If so, it's (obviously) an IV but it takes about 4-5 for the injection. Some people require it monthly and some get it every 8 weeks. I'm not sure what the cost is in the US but I believe in Canada here it costs about $4800 per injection. (This is where the insurance comes in haha) Again I'm not sure what the limitations are in the US but I would take a guess that your parents' plan would cover atleast a percentage of the cost and you should be able to get some sort of "sponsor" or they have Remicade assistance programs as well.

As far as Humira, personally I think it hurts more...especially if you don't like needles. You can take Humira in either a syringe or a pen where you click the back (like a pen) and it shoots the needles in and releases the medicine. Personally, I absolutely hated the pen but many people don't mind it so it's all preference.

Both Remicade and Humira have their pros and cons. Money, time, effectiveness, etc are all things I would consider when deciding. It's important to have your doctor explain all the risks as well with crohns medications because some carry some risks that we need to be aware of so we can catch them before they get serious. I, myself will probably be going on Imuran on Wednesday when I see my GI because I'm currently not on meds and having some problems because of it.

While it dates back to starting with the lowest/safest medication to help with crohns, many doctors are starting to do the opposite and do a top down approach because it seems to be much more effective and knocks people in remission sooner so they don't have to keep jumping up with medication because the last didn't work.

Best of luck with everything and see you around the forum.

Oh, I'm a 22 year old male myself just so you know and the members here range from their teens all the way up to some people that are eligible for the senior's discount haha

 

[Jyscall]

Hi and welcome.

Be strong, everybody here knows what is it to learn this when your adult life begins. I'm 26 and learnt this in Jannuary

I confirm what KWalker said, your doc is trying going already with a strong drug. I think is right in your case. Yeah you have some oral pills but not as efficient as the anti TNF, althugh like aza they synergize well with Humira/remicade.
I'm on Humira pen too. It hurts a bit yes, but it's easy to do, I had once the normal syringe and couldn't do it myself, too scary.

 

[SarahBear]

Welcome to the forum!

You might want to check out the Remicade section and Humira section of the Treatment forum. You can read about others' experiences (but keep in mind that everyone reacts differently to different medications) and maybe find some basic information on the costs. You might also want to check out the wiki pages for each medication. It might make you feel more comfortable to learn as much as you can.

As has been said, oral medications are sometimes prescribed first - because most of them are more gentle. However, many doctors prefer to start with stronger medications to more effectively stop the disease and prevent further damage. If your case is severe, they usually take this method.

Needles used to bother me, too! I took methotrexate by injection weekly for a while, and I got used to it. It's different than a Humira pen, but I think still the same basic concept! It might be difficult to do yourself for a while, but I promise it gets easier. I had my brother do my injections for the first few weeks, and that really helped me get more used to the idea of doing it myself. I don't know if something like that would be logical with a Humira pen, but I thought I'd mention it anyway.

Please keep us updated!

 

[Mag48]

The Humira is look pretty bad from the video experiences I am seeing! It looks generally unpleasant! Being compared to a hornet sting really turned me off! Maybe the remicade is the better option!

 

[KWalker]

A hornet sting? I wish! Lol I'd say maybe a hornet sting on the worst sun burn I've ever had lol

 

[Hobbes650]

A hornet sting? I wish! Lol I'd say maybe a hornet sting on the worst sun burn I've ever had lol

Yeah that's the right idea. Scare the crap out of the new guy. :ytongue:

Remicade isn't much fun either- unless you enjoy sitting down for a few hours with an IV in your arm. Although I believe you get benadryl first through the iv, so that part's ok. Either method is preferable to something that isn't working though.

 

[PlutoCronie]

I am glad that you found out the reason for your symptoms and that the GI knows what Rx to try out. Although my symptoms were relatively mild, I was scared also, as well as very angry, when I was told my Dx. And unlike you, I have already lived a full life, but still, the thought of having the rest of my life compromised was not appealing. I can tell you that from what I've read both on this Forum and through other research, there is a tremendous amount of knowledge and exploration on IBD that had not been present in the past. So, maybe if there is only little thing to be grateful for, maybe that's it. Good luck to you and I'll see ya 'round the Forum!

 

[afidz]

Hello and welcome!
I have visited northwestern hospital before (not as a patient) its a great hospital so no worries there. I've been on humira and i loved it, you inject in a fatty muscle so it really doesn't hurt and you get used to it. Remicade takes a lot of time out of your schedule but they are both very similar, i too have blue cross and blue shield of Illinois,, when i was on it i think i paid fifty a month but you can get on prescription discount programs to help as well. It seems like you have a greatt doctor checking all bases if the disease. remission is achievable, just have to keep your eye on the prize.j look forward to heading what you decided and how you do!

 

[acheallova]

Hey Mag, welcome to the crohnie community. We are here to offer an ear if you need to vent, point you in the right direction for info links or those with experiences in that area. Feel free to browse about, get involved. We even have games...they get interestingly fun. Takes your mind off of disease for while. Welcome again. Hope the injection or infusion works for you. It seems that your case was severe enough that your dr wanted to get you " under control" in a sense with the heavy hitters verses starting on the orals, not to say he wont use them in conjunction with each other. Good luck! - hugs-

 

[KWalker]

Yeah that's the right idea. Scare the crap out of the new guy. :ytongue:

Remicade isn't much fun either- unless you enjoy sitting down for a few hours with an IV in your arm. Although I believe you get benadryl first through the iv, so that part's ok. Either method is preferable to something that isn't working though.

LOL ! I'm biased because I hated the Humira pen and ended up wasting a lot of money/medicine because I pulled out before it was done but like I said many people actually enjoy the pen over the other methods

 

[Earnellzwifey]

I take Remicade. As for cost it is about $10,000 per infusion and I take it every 8 weeks. Thank God for insurance or I would be in bad shape with those type of prices . Since mine is every 8 weeks I do not mind the 4 hour wait and I have a personal T.V. with headphones or some times I use it to catch up on some sleep. I am bias because I have never been on humira but I do have to inject insulin daily and have to check my blood sugar levels 3 times a day, and I would not want to add anymore needles to my regimen.

I hope you get on what ever will put you into remission. Please keep us updated.

 

[Mag48]

Thank you all for the helpful words and responses!

I have to admit starting out with the more potent medicines makes me a little nervous. What other medicines would be used for people that have moderate Crohns that may be taken orally? I may speak to the doctor about try something a little lighter first.

Also is there any correlations between Lyme disease and Crohns? My mother loves to Google And she has Lyme and is insisting I'm also tested for Lyme because of the similarities in the bacteria that cause both of these. I keep trying to explain that I am going to a really great hospital and it seems without a doubt I had crohns. No alternatives were even listed. Should I discuss this with my doctor? I feel like I can't get my mom to even look at the here and now as she is convinced I am not being treated effectively and should be treated with antibiotics.

 

[acheallova]

I myself haven't researched lyme disease but some dr believe in MAP as a causitive agent and treat crohns with mega doses of a combo of antibiotics, so if you believe in that to try first, then talk to ur dr. They are all oral. Myself, i was diagnosed with severe crohns and am currently on MAP treatment. Doing fair as could b expected.

 

[Sami]

I feel for you, diagnosed myself at 25 back in 2001.

I was scared of needles and couldn't swallow pills back when I was diagnosed. Used to take me 3 hours and about 5 litres of water to get all my meds down when I was first in hospital. It soon becomes easy and normal, and isn't half as bad as some of the hospital procedures plus ypu have to get used to having bloods taken so regularly. Over time you may find your pain threshold changes too.

I've just started Humira, had my 4 loading doses and it was fine. About 5 seconds of harsh but bearable pain per injection and then little after effect. No worse than a B12 injection. Guess it affects people differently, but don't be put off by horror stories.

Good luck