Should we try Remicade

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Hey Kathy,
Peyton is doing great since the infusion on Friday. I don't want to get my hopes up that this will work, but its awesome to see him feeling good and in such a great mood! He's gained 5 lbs in the past 3 weeks.!! Thanks so much for checking in!

How's Brian doing?

Hope all is well,

:)
 
I can relate to your not getting your hopes up, but sounds like Peyton is going to get better with Remicade...Go ahead and celebrate! You both deserve it!!
Brian's doing well, wish he was gaining weight like Peyton is!
 
Hi Kathy,
This is the first time peyton has gained anything since he lost weight at christmas time, its nice to see him hungry! But, he's still a wicked picky eater... pretty much doesn't like anything! Its frustrating! I'm hoping he'll grow out of the pickiness!

Brians not gaining?
 
Darlene,
Sounds like Peyton is doing great, I can't believe he has gained that much weight. That is very encouraging. I have not seen an increase in Garrison's appetite yet. Hopefully that will come soon. I guess I am lucky that Garrison is my best eater. He will try anything and likes most veggies.
I am so glad Remicade is working for Peyton!!!!!

Take care,
Vicky
 
G's mom said:
Darlene,
Sounds like Peyton is doing great, I can't believe he has gained that much weight. That is very encouraging. I have not seen an increase in Garrison's appetite yet. Hopefully that will come soon. I guess I am lucky that Garrison is my best eater. He will try anything and likes most veggies.
I am so glad Remicade is working for Peyton!!!!!

Take care,
Vicky
Click to expand...

thanks vicky!!!
 
re: side effects of remicade

Irvine82 said:
what freaked me out was all the possible bad side effects! i didnt take it but Im sure it helped a lot of people:)
Click to expand...


Hi there,
As with any of the med's out there to control crohns, there could be side effects. My son hasn't had any so far with the Remicade. We were worried about allergic reactions to the drug, but so far we've been lucky and he hasn't had any.

What are you taking??? Just wondering...
 
It has really made my day to read that all is going fab with your kiddos. May it keep on keeping on Mum's!

Much love, :Karl:
Dusty. xxxxxxxx
 
Garrison had his second infusion yesterday. What a day!
They rolled the first vein again but got the second one with no problems.
Early on he complained about feeling jittery and his heart racing. I explained to the nurses that I do not allow my kids to have caffeinated drinks very often, especially not an entire Dr. Pepper at 8 o'clock in the morning. We all had a good laugh about that.

Things were going great and Garrison wanted something to eat besides hospital food so I left. I wasn't even gone 10 mins......:yfrown:

When I walked back in both nurses were over him, his vein blew and he had a knot the size of half an egg on his arm. He said it started hurting real bad but he didn't want to hit the nurse button because he was afriad an alarm would go off. Thankfully one of them heard him crying and stopped the IV before it got too bad. Yep, Mom of the Year. What was I thinking leaving, UGH! Garrison said not to worry, he was a little scared but was fine. He then proceeded to eat both my lunch as well as his. So that made me feel a little better.

He had gained 4 lbs in 2 weeks so I am just like Darlene, cautiously optimistic.

Take care,
Vicky
 
You were thinking about feeding your little guy!!! Dammit Vicky, don't ya just hate Murphy's Law!!! Happened to me a couple of times when Matt was in hospital. Sitting next to the bed the whole darned day, whiz out to get him something, like you say, no more than 10 minutes, and whammo you get back to find all hell has broken loose...:voodoo:

But wow! What a hero G is! You so wish they didn't have to step up to the plate like this, hell, they're only kids but it does make you proud and so in awe of them to see the things they deal with. Kudos to G! :medal1:

Mega (((HUGS))) to you both...:hug:
Dusty. xxxxxxxx
 
Petyons mom said:
Hi Kathy,

Brians not gaining?
Click to expand...

He is gaining...but like 1or 2 lbs a month! School's out now, so I'm going to keep putting things in front of him. He's going into 6th grade next year and weighs 57 lbs! He is EXTREMELY active!! Never sits down. He'll go from soccer to football to baseball to basketball.....he wears out all the kids in the neighborhood. He was even like that during his last flare...until he got so sick!
 
Irvine82 said:
what freaked me out was all the possible bad side effects! i didnt take it but Im sure it helped a lot of people:)
Click to expand...

There's more 'bad side effects' if you do nothing and live with crohn's, especially for these young kids who need to grow and thrive right now before puberty. Benefits for these kids outweighs any side effects.
 
Brian'sMom said:
There's more 'bad side effects' if you do nothing and live with crohn's, especially for these young kids who need to grow and thrive right now before puberty. Benefits for these kids outweighs any side effects.
Click to expand...

Completely agree with this. Was told by doctors early last year at 18 they wanted to start Remicade and my mom freaked at the side effects. Was an easy time convincing her it would be alright as when nothing else worked I had basiclly two choices: Sit at home on a toliet and continue to lose weight and in the process probably lose my job, quit sports, and drop out of university OR take a chance on Remicade and work, play sports, and go to university. Can somebody explain to me why I took it again...:ybatty:


Anyways I've said it before on here and I'll say it again; what you parents do on here is really and truely amazing and I feel so much for you guys because I can still see my mom's reaction to this in the hospital the day I was diagnosed. I still remember the late night information meetings in my bedroom with her after hours of searching into the night and the excited calls when some sort of good news came. Your kids are lucky to have you as I am lucky to have my parents, it really goes a long way even if they are still too young to realize that yet.
 
hey everyone!
I love this site, its so inspiring to us parents to see other kids going thru the same thing victoriously, these kids are truely amazing! We had to bring peyton to an endrocyrinologist (spelled that wrong i'm sure!) yesterday, as he was exibiting signs of puberty (hair on upper lip, and genitals). They were afraid that if he started puberty now, that he'd never reach his potential height. Anyway, the very good news is that he's far from puberty, and that the extra hair growth could be caused by the adrenal gland NOT the sex glands, or could just be a side effect of meds. The hand xray showed his bone age to be 10, he's turning 11, so he's only 1 year off now. When he was diagnosed in 2008, he was 2 yrs behind, so he's catching up a bit. He's now like just over 4ft tall and weighs about 62.5lbs, so thats a gain since christmas when he dropped down to 57 ish.... His next remicade infusion is in 3 wks, this will be the last of his starter doses, and so far he's doing great! Its so nice to see a his face filling in a bit and his skin color going back to normal from the ghastly pale whitish/green that he was when he was sick!
 
Woohoo Darlene, this is just so fab to read! May it last and last and last!

:mademyday:...Mum!!!
Dusty. xxx
 
Fingers and toes crossed for continued good news! I'll cross my eyes if it will make a difference! :)
 
Hi everyone,
I know we haven't been on for a while, work has been a pain lately. ANyway Brandon had his third Remicade infusion today. Went very well. The second infusion blew a vein but no problems this time. I gave him Benadryl before and after, he had a little redness on his legs, but no rash. He has gained 12 pounds since starting Remi and is "eating like a pig!!" accoding to his brother. He spent the first full week at school last week, but had to miss a day this week throwing up. COuld have been a virus as half his class were out with a stomach virus. He is mostly pain free, mostly "normal" BM, but still frequent. Joint pain has completely gone, no more eye effects. A different child entirely.
Picky eater remains but, he is looking so much btter.
We saw a rheumatologist today after waiting 4 months to get an appointment. His joints are doing well now, but we kept the appointment anyway so now we are established incase we need an appointment later. The Rhuematologist, said his knuckles and both knees were larger and showed some signs of mild arthritis. He also said that 100% of children who use Remicade for arthritis also have a low dose of Methatrexate to prevent antibody formation against the Remicade. He recommended 5mg per week for Brandon, and said he would call his GI Doc to talk about it. Anyone else taking Methotrexate in addition to Remicade? He still takes Asacol and Omeprazole too.

Anyyway a long post Glad to catch up with all the other successes. Hnag in there everyone.

Trina

PS My husband tries Rituximab (another monoclonal antibody) for his undiagnosed autoimmune condition that causes low platelets and low white blood cells tomorrow!!
 
Oh wow! Excellent news Trina...:banana::banana::banana:

I am so, so happy that Brandon is responding brilliantly and putting on weight...:):):)

That is really interesting about the Remicade and Methotrexate. I don't know much about Remicade but I don't think I have routinely seen Methotrexate prescribed along with it. I will be curious to see what experiences others have had.

Good luck to both your boys hun and keep us posted!

Much love...:hug:
Dusty. xxxxxxxx
 
Glad to see your update Trina! When does Brandon get out of school for summer break? We got out 2 weeks ago!!

Sorry, I'm no help with the methx question. Did you try searching the combo in the Search function?
 
First of all - I am so happy that your son has gained 12 lbs!! That is great news!!

My son's dr recommended methotrexate with Remicade when it started becoming less effective after the 5th infusion. We found out later that the reason it was becoming less effective is because my son was building antibodies against it. I wish we would have started it now because the Humira injections are very painful compared to the Remicade IV. Dr did not specifically tell us to start methotrexate to prevent this...I wish he would have!!! But of course he did not know this since only 10-15% develop antibodies against Remicade.

My son is now on methotrexate pills with Humira to prevent antibodies being built up again.
 
Good news Trina!
Our GI doc mentioned Methotrexate combo but only if Brian's SED rate and CRP values weren't getting close to normal. She explained it as another 'chemo' drug. She said its a shot every week or taken by mouth. I wasn't too excited because she said it would have a side effect of nausea for day and half after dose. Did your doc say anything about that? She also explained it to us like it was similiar to combining azathioprine with the tnf drugs. She didn't go into much detail...more of a wait and see what the blood test results say first...she knows I'm resistant to adding medications! I even want Brian off Pentasa because they keep saying that drug doesn't do much for Crohn's kids, so I then ask, Then why is he on it? When SED rates drop again...he'll be off that too is the plan.
 
I love the forum too! Thanks for the idea's. The rheumatologist prescribed methotrexate Orally 5mg per week, once a week. He said he would be tired after taking it so to take in on a Friday or Saturday night. Also his Liver function would need to be monitored and if a problem he may have to do the shots. He did say the 5mg/week was extremely low as when it is used as Chemo it could be 4000mg or something like that.
The nurse practitioner who gave Brandon the Remicade said they had never used it to prevent the build up of antibodies, she thought it was used to treat the arthritis. Anyway the Rheum said he would call the GI and the ARNP said she would talk to the Doc and call us on Monday.

I am suspicious of antibody build up because we do have to load him up wiht Benadryl and claritin prior to infusion. The first infusion lead to a lot of side effects, but none since then. This time (3rd) he did complain of abdo pain again 3 days later?? First time since Remi started.

Trina
 
Brian'sMom said:
Good news Trina!
Our GI doc mentioned Methotrexate combo but only if Brian's SED rate and CRP values weren't getting close to normal. She explained it as another 'chemo' drug. She said its a shot every week or taken by mouth. I wasn't too excited because she said it would have a side effect of nausea for day and half after dose. Did your doc say anything about that? She also explained it to us like it was similiar to combining azathioprine with the tnf drugs. She didn't go into much detail...more of a wait and see what the blood test results say first...she knows I'm resistant to adding medications! I even want Brian off Pentasa because they keep saying that drug doesn't do much for Crohn's kids, so I then ask, Then why is he on it? When SED rates drop again...he'll be off that too is the plan.
Click to expand...

Luke has been on methotrexate for about 6 weeks ago and he takes ondansetron (anti-nausea drug) 30 mins before he takes his pills to prevent nausea. He has not experienced any nausea after taking the pills. :smile:

Our dr will not combine azathioprine with anti-TNF drugs since the majority of cases that involved lymphoma were with that combo.

I am suspicious of antibody build up because we do have to load him up wiht Benadryl and claritin prior to infusion. The first infusion lead to a lot of side effects, but none since then. This time (3rd) he did complain of abdo pain again 3 days later?? First time since Remi started.
Click to expand...

Our nurse said the standard pre-meds for Remicade was benadryl, tylenol and prednisone. Luke always received this combo before his infusion. Around his 3rd infusion, he started experiencing nausea and an excruciating headache about 30 mins into it. It would last about 10 mins and then go away. After his 4th infusion his SED rate never went down to the teens like it did at the beginning.

Luke is on 15 mg/wk so now I need to see if he can go lower since your son is on 5mg. Thanks for the info!!! The less medication the better!!!

Oh yeah, at the beginning of methotrexate my son started losing a little bit of hair. He was starting to get a bald spot like my husband's!! It has stopped falling out though. :smile:
 
My medication before remicade (6mp) did nothing. I got on remicade and it has helped the pain.. SO..much. There are alot of bad sides to it like its hard to fight off disease becasue it supresses your immune system. It also takes calcium from your bones. If he does start remecade make sure you get calcium pills. If your bones get weak it can lead to osteoporosis. Rare cases are bone cancer. But if you take care of your bones then it shouldnt be a problem. It's worth it because before this treatment came along for me i was in pain every day of my like. I got crohns when i was 8 or 9 i forget. but im 14 now and JUST this year they got me on this. Now i can accually eat and enjoy life normaly. I can gane wait and im growing now. Sooo there are alot of pros and cons. Hope i helped :)
 
Trina,
So glad to hear how well Brandon is doing, especially gaining all that weight, WOW!
I am also so glad to read everyone's experiences and information. I have learned so much through this thread. Y'all are wonderful.

Take care,
Vicky
 
Thanks to all about the info on methotrexate. If this becomes a drug for us down the way, I now know a lot more about it. (Kudos to this forum:))

Ali2015, Do you happen to know if Humira robs calcium from their bones too? Since its an anti tnf drug also.

scrapper1264 said:
My son is now on methotrexate pills with Humira to prevent antibodies being built up again.
Click to expand...

I thought the chance of antibodies against Humira were slim because it was all human. Is that right?
 
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Max was losing a lot of hair in the beginning of Remicade. It was devastating finding lots of hair on his pillow in the morning. Especially since he loves his long hair so much. But now it's back to normal.
 
oooh, I didn't hear about hairloss being a side effect of remicade? Peyton has long hair too, we haven't seen any hair loss so far.....

darlene
 
How often do the kids get blood test after starting Remicade? Garrison hasn't had a blood draw since his first round. He has an appt. before his 3rd infusion but they did not order blood work before then. Is this normal?
He had that episode last week and is very tired again, so I am a little concerned. But I am not sure if it is anemia or the 100+ degree weather!

Take care,
Vicky
 
My son had blood work done at every Remicade infusion to make sure it was working, to make sure his liver function was good, and his white cell count was not too high. The only time he had additional blood work done was if his numbers were high at infusion time.
 
Brian'sMom said:
I thought the chance of antibodies against Humira were slim because it was all human. Is that right?
Click to expand...

I thought the dr said if someone is allergic to one anti-TNF there is a possibility he could be allergic to another one. We have an appt next week so I will ask him about that again.
 
I get my blood drawn every other infusion (so every 16 weeks) - when I first started I don't remember if it was more often.....I DO sometimes have to remind the staff that I need it drawn - especially if there are new people...this is a standing order, just like my B-12 shot.....
 
Vicky-We had blood drawn every other time when we were doing remicade.

Scrapper-I was told that hardly anyone has allergic reaction to Humira. (The breathing allergic thing). That's why on only the second dose its done at home and only parents are present. I'll have to say...I was a nervous wreck on that first time at home!!

I think remicade works better than Humira...so I have my fingers crossed for all these kids doing their induction period.
 
Peyton hasn't had any bloodwork since starting remicade, his 3rd loading infusion is on June 27th, so I'll ask the doctor then... thanks!!!
 
Hi all,
Brandon has blood drawn after they put the IV in each time, before the remicade. I give him Claritin before the infusion and benadryl afterwards for 24 hours. We are going to start 5mg per week of methotrexate, because the Rheumatologist gives it to 100% of his Arthritis patients who are successful with remicade to prevent the build up of antibodies.
Brandon is doing amazingly well, very few problems, occasional stomach pain.
My husband Lee started Rituximab for an undiagnosed autoimmune disease that causes low white blood cells and platelets, Its been 24 hours and he is doing well. Now I have two Mighty Mice in the house!!
Trina
 
Excellent news Trina!

May it last a lifetime for both your boys!...:hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
Garrison had his 3rd infusion today, with no reaction YEA!!! But, his lab work from last week came back with his hemoglobin low again, still at a 9. So, they are wondering if he has thalassemia. Anyone familiar with this? The dr. took him off iron and has put him on folic acid as well as methotrexate.
He had blood work done and the nurse said they should know something by Friday. So, I feel it is 2 steps forward and 1 step back.

Thanks for listening,
Vicky
 
Hey Vicky, thats great that garrison got thru his 3rd infusion! Peyton had his 3rd infusion on Monday, did great, they did labs, so this will determine if we need to do another one in 6wks or if we can go all the way to 8 wks. They also will check for vitimin D levels.

Peyton is feeling great, has put on about 7 lbs or so, and looks so much healthier! He had his first day of camp yesterday, and got a prize for "Camper of the Day"!

Good luck to all!
Darlene
 
Darlene,
I am glad Peyton is doing so well. Can't believe he was able to go to camp the next day, but it sounds like he had a blast. Garrison was a little tired yesterday and he slept til 9 this morning. He did gain another 4 lbs so we are excited about that. Hopefully we can figure this anemia thing out and then we will be all set.

Take care,
Vicky
 
Hey vicky,
Ya, peyton usually has a lot of energy after the infusions, he was a little tired when we first got home from the benadryl, but once that wore off he was fine. Thats awesome about the weight gain, I'm so glad things are working out! Hope they figure out the anemia thing soon!

Take care,
darlene
 
@Darlene, excellent news hun! May it keep on keeping on! :hug:

@Vicky, I'm so sorry to hear about the anaemia. I only know the basics about Thalassemia. That being, it is hereditary and tends to more prevalent in particular ethnic populations. Do you have any other family members with it? I guess they can test to see if you are a carrier, is that right?

Dusty. xxx
 

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