Another Update - new med choice question

[Twosons]

Once again I posted and disappeared. Life since Ev's diagnosis in June has not stabilized yet. He was hospitalized again(4th time) last month and currently he's again hospitalized in Cleveland.

We made our trek up here from Tx seeking help we felt we were not receiving with his old team. His disease area has kept spreading, symptoms never eased and honestly we've watched our soccer playing, distance running son get to the point where he needs rest just walking around the block.

He was set to be seen outpatient and all was going well last week until our 3rd day. While sitting at the GI's office waiting test results he mentioned his pain was suddenly increasing. The doctor was called to the waiting room , took one look at him and asked that he be brought back. When Ev stood up we all looked down and realized there was blood on his seat. I think my heart stopped. He was admitted for bleeding, erratic blood pressure and pain. Yesterday was the longest day of my life. Ev had a partial blockage and my poor baby went through hours of pain as they did what they could to see if it could be cleared without surgery. Thankfully around 5pm it finally cleared. Ev describes the pain as if someone stuck a burning knife in his stomach and just twisted and twisted it. This morning he says he feels beat up inside but his pain is only a 5 level.

We make the decision today about our next medication/medications. Ev's scope from last week shows his disease has tripled in affected area. The worst news was seeing it in his stomach so severely and in his esophagus. His colon is now fully affected . To have the GI doctors here classify him as very severe just broke my heart. Friends flew my husband in last night so that was a big comfort. I sit here wondering how this all happened. I know it's not a puzzle and yet, I feel like if I could find a missing piece the answers would flow.

Many prayers to all of your children and your families. Having only walked this path since June I feel so saddened to see so many beautiful children being affected by this disease.

* I forgot to mention Ev did the NG tube for a month and symptoms never improved. The new GI removed his tube last week saying Ev gave it a good shot but in his case it just wasn't successful. He has not resumed eating though due to the current situation but the hope is to start soft foods today.

 

[Twosons]

I completely forgot my med question. We are to decide between Humira, Remicade or Methotrexate. Any input would be greatly appreciated. My son just turned 15 and has been bleeding roughly 10 months.

 

[imaboveitall]

Twosons I am in a similar boat as of YESTERDAY.
V is now "far worse" with "small bowel disease much more evident than before and of a stricturing type".
Remicade is likely next for her and I am in shock, really.

Though your dear boy didn't have symptom relief from the NG feeds, I would ask why not continue them solely for the nutritional value they provide?

I would not be without them for V; her nutrition cannot be compromised in my view, that is unacceptable to me.

 

[crohnsinct]

I am so sorry for all you are going through. It sounds horrible.

My daughter is on Remicade and doing very well with it. Easy dosing (Infusion once every blank weeks...hers is 5 but some kids can go out to 8), very few side effects, same risks as all the others.

The big pro for mamma, while they have the IV in they draw blood for testing so we are never more than 5 weeks away from blood results.

Good Luck!

 

[Farmwife]

What a blessing your hubby could be with you guys.
That's some mighty good friends you have.
So sorry to hear the struggles.
Please keep us updated.

 

[Mara114828]

I completely forgot my med question. We are to decide between Humira, Remicade or Methotrexate. Any input would be greatly appreciated. My son just turned 15 and has been bleeding roughly 10 months.

My son is on remicade. Has been for over 5 month now and seem to help. He had an ileostomy done in june and that has helped with the pain. Surgeon said he is not ready yet for a reverse surgery as his fistula and ciste is still not healed. My prayers are for all who is suffering right now, because the pain Is excruciating, It was heartbreaking to see my child suffer the way he did! God bless you!

 

[Clash]

Twosons, my son is on Remicade and methotrexate. The remicade just wasn't doing the full job. We are still early in on adding the MTX but he has had no symptoms since last infusion, which is a first, fingers crossed he makes it to his next infusion, next week.

CIC, is right the remicade is easy dosing and C doesn't mind it at all. Whatever your choice I hope your son gets relief real soon! Sending support your way.

 

[Sascot]

So sorry to hear what has been happening - it must be very stressful for you both. I am only at the beginning of the meds journey, but I would say Remicade would probably be the next step if he was in Scotland. I truly hope that whatever they choose, it works really quickly so your poor boy can feel better!

 

[izzi'smom]

DD tried Remicade first, then moved on to Humira after Remi failed. I guess it's a bit easier to push it through the insurance companies in that order, which is sill, IMHO. Remi ran us $7000/treatment and Humira is about $1000/shot. No preference between the two, as neither worked for us, but hoping one of them does for you!!

 

[QueenGothel]

With the colon being fully effected I know Remicade is more for small bowel. I would think MTX or a combo. So sorry your going through this have they discussed maybe an ileostomy. I know that sound so scary to a mom, but a lot of kids get immediate relief from colonic disease as it can be very painful and bloody. Not to mention scary getting all the transfusions and maybe avoid needing to have the colon removed. Maybe get one area under control and work on the rest. Just throwing out other options. Your poor son must be just sick of it all. :frown:

I hope he gets some relief. We saw immediate relief with the ileostomy but my DD colon was useless at that point and she had UC not Crohns. We were scared to death but in 24 hours her pain was managed. We did give the Remicade a go and it did help some with the bleeding but it was just not working well enough for remission. We are thankful for Remicade though bc it took us from a horrible situation very sick, malnourished kid having a colectomy to a healthier candidate for surgery.

 

[Patricia56]

Remicade and MTX together.

Our experience was that Humira took a while before we saw a significant response. I've read some research stuff and seen folks comments that seem to support the idea that response to Humira tends to take longer to become apparent.

If he's going to respond "pow" to a TNF-alpha then I would go with Remicade because that is the one that is most strongly associated with that type of response. Sometimes you see improvement the same day.

And, despite the much advertised warnings about cancer, I would do it in combo with MTX. The risk of cancer is tiny, much smaller by a whole lot than his risk of dying in a car accident for example. The benefit in extending the period of time that Remicade will be helpful has been pretty clearly shown by recent large studies.

I am sorry he is so very sick. I hope that he responds to the change in meds.

My son was not that sick but did have extensive stricturing, colonic involvement, perianal disease and ulcerations throughout the small intestine and colon. He went on Humira as part of a clinical trial (could not get his regular doctor to put him on Remicade, long story there) and went into remission. But it took about 5 months to get to what we all agreed appeared to be remission.

His latest MRE showed NO strictures vs. extensive stricturing to the point the radiologist just described it that way after specifically describing two areas in or near the TI.

 

[crohnsinct]

I noticed Clash mentioned that Remicade was "working all the way" for her son so they added Mtx to the equation. That also happened with my daughter but instead of adding Mtx we added a course of EEN to give Remicade the boost it needed and she has been great ever since.

Now there are other reasons to add Mtx to the equation and that has to do with the Mtx's ability to help stop the body or slow the body from developing antibodies to the Remicade so that is a consideration but our doc hasn't mentioned that to us yet.

Good luck!

 

[my little penguin]

Another remicade here.
It took 3 infusions 6 weeks for DS to really improve .
Our Gi only does remicade only for most if his patients only adding Mtx if the patient doesn't want to move on to humira .
I have linked a few studies in the research section above where Mtx unlike 6-mp or Aza has not been shown/proven to increase the length of time remicade remains effective. Regardless of remicade only or Mtx /remicade combo the remicade still stopped working about the same time ( 1 year).
6-mp/Aza however plus remicade did increase the length of time.

Remicade for DS is a true miracle.
All of DS symptoms are gone.
Unfortunately the remicade does not last the full 6 weeks so we may be playing with dose soon.

It is a hard decision .
It would be easier if you could know which drugs may work and then chose from those but....
What may work for one does not mean it will work for another.
DS tried Mtx for 8 weeks - his symptoms got worse so for him not a good choice.