Blood again... 4 weeks out from remicade

[my little penguin]

So DS was doing so well....
Today is 4 weeks 1 day from his last infusion.
He told me last night he had pain with his BM and this morning at school some blood on the BM but no pain.
We have 11 days until our next infusion. Rheumo had wanted 4 weeks . Gi wanted 8 weeks . We scheduled for 6.

He just finished induction so 4 weeks is the longest he has gone so far.
Ugh I hate this ..

 

[Clash]

So sorry to hear he is having issues now. It is so hard after seeing them do so well through the loading doses. I hope this is just a one off or something they can fix with a dosing schedule change.

It was the same way for C. The loading doses were awesome but he just can't seem to make it to 8 weeks, we made it to just four the first 8 week stretch too. We upped the dose and moved to six weeks but have now added methotrexate too. Just had our Remicade on Monday...I so hate the wait and see.

 

[WCreasy]

Hang in there!
My Remicade took a while to work so give it several treatments before you get down; it is an expensive drug and sometimes it doesn't work for everyone.
I have now built up an immunity to it after two years so I am switching to Humira and I'm nervous about that but I don't want the blood in my stool back-but after 2 years on Remicade, now I have Iritis and am on Prednisone drops as I keep getting it and I'm on 10mg. of Prednisone while I wait for Humira sample pens as I have NO INSURANCE! So, hang in there!!! There is hope!

 

[Patricia56]

He may need a longer period of regular infusions to become fully healed.

It's hard not to react and assume the worst isn't it?

 

[Tesscorm]

Oh, I'm so sorry to hear he's some some symptoms! :ymad: Hoping and praying it's as Patricia says and he just needs a bit longer to completely heal! :ghug:

 

[my little penguin]

No blood tonight so maybe a fluke
But his heart rate was up earlier and eyes are all red.
If its not one thing it's another
Not giving up on remicade yet just frustrated that these things happen on the weekend
I want my bubble back
It was a good few weeks

 

[upsetmom]

Glad there was no more blood.
When his heart rate was up was he in any sort of pain?
When we were at the hospital recently my daughters heart rate was high.
The pediatrician said if there is pain anywhere in the body the heart rate goes up .....just a thought.

I hope you get your bubble back....:hug: