Pre meds for Remicade?

Glad it went well and you had someone to drive you. I hope this works for you and you respond right away! There are ladies in my support group that have been on Remicade for over 15 years. They have had no issues. Getting infusions can be a hassle with the timing. But if it works it's well worth it.

My reactions happened usually during the infusion--although if we run it at regular speed I have to puke on the way home and I have a terrible headache that lasts 24 hours.(like that from 1st infusion) There have been times after an infusion where I felt like my mind was on fast forward and my body was fatigued and in slow motion. Hate that feeling-would rather just feel tired.

Just asking.... Has your doctor recommended a port? I ask because my GI and Colorectal Surgeon requested that I get a port when I first started biologics. There was some debate about the meds impacting your veins and making access really hard after you had been on the infusions for awhile.

Post Edited (clo2014) : 2/16/2022 3:23:46 PM (GMT-7)

Once the drip stopped were you still out if it? Or were you awake and cognizant?

I didn't know they could do Benedryl drips. That sounds much better than them pushing it thru my port really slowly, waiting 15 minutes and then starting Remicade. Benedryl makes me feel so strange--and I literally have no body control during those 15 to 30 minutes. My eyes close, my mouth doesn't work properly, and I am usually just completely out if it. Giggle, dose, giggle, Then stagger to the bathroom every 20 minutes for the next hour... Then I finally settle down. Scarey part is I seldom remember anything after Benedryl push til 90 minutes later. It then takes me the rest of my Infusion time to wake back up. Right at the end of my infusion I am finally alert enough to make the drive home.

The infusion place is 2 hours one way from my home, they don't allow my spouse to come in, the infusion lasts at least 4 hours and he can't just sit in the car that long... so I drive myself. So I'll probably have to just leave it alone...

But gosh. I'm sorta jealous of your Benedryl Drip. Hope it continues to go well.

I started seeing results right away. I hope you do too.

I wouldn't think about a port yet. See if it even works first. A nurse mentioned a port to me at my very first infusion and it scared the crap out of me and she really had no place suggesting that at my very first infusion ever! I found there was one nurse who was good at sticking me and she told me I could ask for her every time thereafter. This was after a hellish experience where 3 different nurses tried sticking me for over an hour and one hit an artery. This was all with them using one of those little ultrasound machines too to help them find a good vein.

I just spoke to one if the ladies in one of my support groups. She said it took her 4 months before she noticed improvement... But she's been in remission ever since. And she said she has a friend that didn't show improvement for 6 months. They've both been on Remicade for over 12 years. One if them did start taking methotrexate along with the Remicade.

Sorry about the headache. I get that too... Tylenol and it's better. Concentrating during Remicade after taking Benedryl is impossible for me too.

I have a port. It's the best thing I've ever done. I got mine before we ever started Remicade. Our game plan was Remicade and if that stops working Entyvio--so the port was a good investment for me. No troubles with mine working-although it does sorta move around a bit.

Oh no...StrayDog... I am one if those people... I had my first infusion in the hospital. I had been in North Texas for sepsis for a week--plus my Crohn's was really out if control. The moved me to Dallas Baylor. At the time of the move I was going 30 times a day, could not stop vomiting even with IV Zofran. Once the sepsis was gone/under control, (still vomiting, going 30 times a day and lots of blood) They gave me the 1st loading infusion and I stopped vomiting that night, the very next day I only went 4 times, and within 3 days there wasn't any blood. It was like a miracle. It was scarey because we had to sign waivers because of the previous sepsis...they told my spouse I had a 50/50 chance of surviving with or without the Remicade. I was really ill. My GI was really surprised and impressed. He said he hadn't seen anyone respond like that before. The down side was the fast healing caused scar tissue and narrowing. So it wasn't all rainbows and bunnies. 🤔

Hang in there and let us know how it goes.

Clo

Post Edited (clo2014) : 2/17/2022 9:01:40 AM (GMT-7)

Clo,

Good to know someone else having trouble sleeping after the Remicade. Terrible night! I’m also prone to headaches so that’s not new for me. Took migraine meds this morning. Tylenol didn’t do a thing.
Feel much better this afternoon!
Not expecting a miracle right now. Hopefully it gets better with time.

Also not rushing for a port. That does frighten me the thought of it!

Hi Clo,
I seem to be waking with a throbbing headache in the morning. I’m prone to headaches. Had them all the time when on Entyvio. Hopefully they lessen with time. Been seeing a neurologist this past year. I seem to be a complicated case. Not sure if they are medication induced. I do have migraine meds if they are unbearable. Was put on a small dose of a beta blocker for break through anxiety and headaches. I think it helps a little.
Been taking less steroid rectal meds. Think that’s been helping with the sleeping too. So I guess to answer the sleeping question, it’s gotten better but still having them.
I take quite a lot of meds at night. I should be sleeping like a baby. Two weeks ago I started on bio identical hormones. Progesterone at nighttime to help with sleep. Estrogen and testosterone in a cream in the morning.
If you have any suggestions, I would love to hear. Vitamins supplements?

Thanks Clo!
Ya know I never thought about the migraine meds causing constipation. The neurologist put me on Emgality injections a few months back. I think it did cause constipation. It was one that was not supposed to. I didn’t feel comfortable taking another injection so I stopped . I do take Zolmitriptan.
It does help. Was that the one that caused constipation?

FlowerGal,

My neurologist said Aimovig causes constipation. That’s why he gave me Emgality. Now the migraine prescription pills I have says it might cause diarrhea.
Neurologist was afraid to write for something else with all my symptoms I was complaining about. He said we will talk about it when I get the UC a little better. If it’s not one thing it’s another.

Big choice constipation or diarrhea? Both are terrible !

Hard choice lol
Need to go into remission 🙄

Sumatriptan often makes me not go to the bathroom the day after I take one, but that's it, just a day. I usually only have to take the lowest dose...50 mg.