Started Humira today

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Twosons

Twosons

Joined
Jul 14, 2012
Messages
71
Started Humira today *Updated 4/28

Ev did two of the loading injections in his stomach and two in the backs of his upper arm. He said he will definitely use his stomach as the injection site from now on. So far he has a headache, fever and overall sick feeling. Waiting and watching.

My oldest son lives on the outskirts of Watertown,Ma and that has also been a focus for us today. He's been keeping us updated but its been scary for me.
 
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OMGosh twosons! So scary. We have been praying for our friends to the north all week and now this! Glad he is keeping you posted. We will keep him in our prayers!

Sorry about Ev's reactions. I hope it passes quickly and gets easier.
 
It is on the news right now that the police caught the suspect. Hope you and your son can breathe easier now.
 
Hugs - did they give Tylenol before hand?
DS is suppose to start his loading dose of humira either next week or soon after .
 
my little penguin said:
Hugs - did they give Tylenol before hand?
DS is suppose to start his loading dose of humira either next week or soon after .
Click to expand...

No Tylenol before hand but he did take it about an hour or two after for his headache. So far he still feels weak and achy with a low-grade fever (100.3) but he said his dizziness is not as bad. His throat feels "tight" but he looks to have about 3 or 4 ulcers on the back of his throat too. He's been in bed since about noon.
 
Hugs that sounds like how DS was after a remicade infusions.
Ugh I was hoping humira would be just a shot.
We will find out soon enough
 
my little penguin said:
Hugs that sounds like how DS was after a remicade infusions.
Ugh I was hoping humira would be just a shot.
We will find out soon enough
Click to expand...

Its very much how Ev reacted after Remicade. His GI told us he was likely to do the same with Humira but we needed to try it since there was nothing else left. I hate all this :( Praying tomorrow he'll bounce back and his body accepts things.
 
Here's hoping it does the trick. My son started back in Jan. and it has really helped a lot. He's feeling great for the first time in a long time.

Maybe this reaction is just because of the large loading dose for the first time. My son felt a little off that first night bit now that it's just one shot each time it's no big deal - no complaints otber than the shot stings a bit. He does it in the top of his thigh and finds that if he pinches the skin real hard it hurts less. Good luck!
 
A few days out and we've yet to see anything worrisome come up. Ev is still very nauseated, has low abdominal cramping that comes and goes, still alternating between C and D, left side pain that hits 1 to 3 times a day, headache, low-grade fever and basically the same as he's been for months. Today he's just doing formula because he feels food would not be a good idea.
 
Sending love and healing thoughts to you and your lad Twosons...:ghug:

Dusty. :heart:
 
Yesterday Ev was feeling a bit nauseated and then :( around 1 pm his bleeding returned. We had a night of back and forth bathroom trips. Still praying Humira will be the answer but feeling a bit discoruraged.
 
In my thoughts Twosons and hoping more than anything that things settle down for your lad, bless him. :ghug:

Dusty. :heart:
 
4/30 and after one day of no blood, its back. We see his GI on Friday and will do labs. I realized last night that Ev is all bruised up. He has 7 bruises of different sizes on his arms and 3 on his legs. Must be related to the switch to Humira. I haven't seen a bruise on him since he was very little.
 
Sorry to hear things aren't improving yet. I hope things get better soon. Has he tried the LDN? Might be worth asking about if there's not many drugs left to try.
 
We are adding Lialda to see if that will help. His GI said we're giving him 2 weeks and if he continues to worsen we need to revisit the NG tube. He also said he has no other medical options if Humira does not work. If he does not respond the next step is surgery.
 
I had never heard of Lialda (or others using it) until our GI switched my son over to it last month. She said it would be easier for him to take 3 pills once a day instead of 4 pills in the morning and 3 in the evening (which was/is his Pentasa regiment). He was only on it for about 20 days when he started getting lower abdominal cramps (not severe, but he hadn't had a cramp in over a year). When I researched Lialda I found it was moreso prescribed for UC because it released higher in the digestive track (in the small intestines) rather in the colon. My son's inflammation was right below the terminal illieum so I immediately felt that this was the wrong med for him and I notified the GI - after 20 days we switched back to Pentasa - cramps are gone and the increased trips to the bathroom went away...

Psychological for my son?? I don't know. But thought I would share.

Praying for you guys... so sorry he's not doing better yet.

((hugs))
 
Shell,

Lialda is definitely used for ulcerative colitis, which is ONLY in the colon/rectum..i have been on it for years for UC (well, actually, i'm not on it or anything else now, as I'm in remission and have been for a while)..those who have crohns in the large intestine/colon can do really well on Lialda, I believe. I never had a single side effect from it, and it worked like a charm for me but ..I"m glad your son is doing better!
 
Wow! Thanks for letting me know! That is so opposite from what I read! I was hoping it was going to be good for him (less pills, we thought would mean less missing of doses), but alas, when he missed a dose, instead of catching a dose with in 12 hours in would be 48 hours - that probably contributed more than anything to it not working...
 
Ev has esophagus ulcers, stomach lining inflammation, duodenum inflammation, colon and rectum inflammation. I believe his illieum was finally good last scope.

His GI said he would want to re-scope him to decide a surgical path. I'm still praying Humira kicks in and he starts improving.
 
I've never heard of anyone injecting H in the backs of the arms. My son prefers his in the thighs. I hope with more time the Humira works for Ev.
 
You can use arms thighs or stomach if its a syringe
Not sure on the pen.
As long as its in the fat not muscle

Is he on humira every week?
 
good luck, twosons! I hope the Humira has a positive effect on your son, and soon! Its' the worst, trying new therapies (and agonizing over them beforehand), only to have them not work..
 

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