Mom Needing Advice

[willsmom]

Hi Everyone,

I am new to the forum and pretty new to Crohn’s.

My 12 year old son Will was diagnosed with Crohn’s in May of this year. He has had a very rough ride and was hospitalized for 8 days following a severe flare up just prior to diagnosis. He was put on Predisone and Sulphasalazine, then Prednisone and Humira bi-weekly, back on Prednisone and Humira is now injected weekly.

After 4 months, Humira seems to be working and about three weeks ago, he successfully tapered off Prednisone completely for the first time since June. About 10 days ago, he started feeling nauseous off and on - not constant but enough to keep him home from school. He has no other symptoms of a flare up - his previous flares always started with diarreah and fever. Will says it does not feel like Crohn’s.

When Will first started taking Humira bi-weekly, one cheek would get hot and red in the evening of the day following his injection. Now his cheek flushes every evening. It clearly seems to be a reaction to Humira.

I am now wondering if the nausea is also a side effect of Humira. Does anyone else taking Humira weekly feel nauseous daily? If so, does anything over the counter help or does anyone take prescription anti-emetics to manage the nausea?

I speak to his medical team tomorrow, but I am worried because they want to start him on Methotrexate as well as Humira if he flares again after coming off prednisone.

He is only a child. How do I know if he is flaring vs. experiencing a side effect of Humira?

Any help you can give is appreciated! Thanks

 

[DustyKat]

Hi willsmom and :welcome:

I'm so sorry to hear about your boy.

I have no experience with Humira myself but we do a Humira forum here...

http://www.crohnsforum.com/forumdisplay.php?f=59

And there are other parents here with children on Humira, Dexky and Brian'sMom pop straight into my thoughts, so have a browse through the parents forum as well...

http://www.crohnsforum.com/forumdisplay.php?f=49

No doubt there will be others along with far more experience than me!

Good luck Mum and I hope they are able to find the right combination for your son soon...:hug:

Dusty. xxx

 

[KWalker]

Hey! And welcome from down the road! I'm from St. Catharines. I am a 21 year old boy dealing with crohns my whole life. I might have missed it but how long has your son had crohns? I'm sure you'll read lots about it but you want to make sure he is not taking prednisone long-term as it can do some bad things, especially because he's so young.

The humira isn't fun either, but for most people its pretty effective. I was on it myself for awhile but for me, after awhile it slowly lost its effect and stopped working. Has your doctor talked about Remicade at all? It might be something to consider, and for most people is a life changer. It is extremely expensive (around $6000 per shot I believe) so you have to get approved for it. Don't worry though, it would be covered if he did get approved. I didn't pay a dime while I was on it.

Do you know if they want to do methotrexate orally or through injections? I was started on pills and had a bad reaction to them or something because I became pretty immobile while on them. I was sick, tired, and was always throwing up. Eventually the doctor switched and wanted to try injections. I went to the clinic every week at first, but eventually learned to give myself injections. The only side effect I had were bad headaches the night I took the shot but for me it was really effective. You have to be really careful because methotrexate is a VERY dangerous drug. Don't be afraid to have a voice with the doctors, and make sure they give you all the details and not just the good ones they want you to hear.

If you ever have any questions, never hesitate to make a post. There are a ton of knowledgeable people on here and everyone is willing to help. You can also PM if you ever have any specific questions or want to talk to a young guy who has gone through similar problems as your son for advice.

Best of luck!

 

[willsmom]

Thanks for the welcome Dusty, I will definitely check out the parents forum also.

K, Thanks for the neighborly welcome - and advice - much appreciated.

I am super happy he is finally off prednisone - the doctor is pretty good - discussed all treatment options - including Remicade - we chose Humira for a number of reasons - (not cheap either, especially given weekly).

If he goes on Methotrexate, it would be by injection. My preference would be that he does not take it...but want to know if there is a way to tell if he is flaring or if he is just experiencing side effects from his existing meds - that is what I want to hear from his medical team.

 

[KWalker]

That's really good he's off prednisone, but being newly diagnosed don't be too shocked if they want to put him on it again at a later day for a short period of time. You say Humira is expensive.. have you looked into a company called Trillium for medical coverage? I don't know a whole lot about it because I was younger so my mom took care of it but I was covered under that company and they covered my Remicade and Humira. I actually have three boxes of Humira (6 shots) sitting in my moms fridge at her house that you could have....Is that legal? lol I really don't have a use for them because I don't take them anymore. I'm sure it wouldn't be a problem if I were to get them and you wanted them. I can check the expirery date if you're interested. It might save you some money, I don't know how much they cost each box, but you can have them. Unless that is completely frowned upon haha.

That's a good question whether he is flaring or having side effects. I wish I could tell you what my side effects of Humira were, but it was a long time ago that I was on it. I do know that it's pretty common for crohns related medicine to cause nausea so I usually take gravol with certain meds.

How do you plan to get methotrexate? Do you plan to get a clinic to do it or will you do it for him? I did it in the top of my leg and I can tell you, it does not hurt at all. Like I said though, just keep an eye out as some people have some bad side effects on it, and like I said it's considered to be a very dangerous drug... Come to think of it I also have brand new syringes and methotrexate at my house too from when I was using it. Wow I sound like quite the druggie lol

Let us know how it goes with the doctors and if you need another opinion feel free to ask us and we can try to help you guys out. You could also get your son on here and he can join the "teens" section so he can interact with some other kids his age going through crohns.

 

[suschex]

Maybe try giving the MyHumira Nurse Line a call...

http://www.myhumira.com/NurseSupport/Default.aspx

1-800-4-humira

I hope all goes well!

 

[willsmom]

K, thanks for the offer, we’re ok for now with coverage.

We have a nurse that gives his Humira injection for now...I guess a nurse will teach us to do Methotrexate injection if it comes down to it.

Getting my son onto the teens forum might be a good suggestion - will give it some thought.

Suzanne, good suggestion - forgot about that number, will give it a try.