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Feeling worse after first infusion?

Hi all

After a long wait I had my first infusion on Friday. It all went well and I was told some people start to feel better as soon as the next day, but I would likely be very tired Friday night which I was.

However I feel much worse since I’ve had the infusion :-( yesterday I had to go back to bed in the afternoon only to be woken up and kept awake by quite severe pain (for me anyway) in my lower abdomen.

Today I have no appetite and I’m just exhausted. I hurt all over and all I want to do is curl up in a ball and never get out of my bed again! Not exactly what I had in mind.

Is this just a coincidence? If anyone else has experienced the same how long did it last?

Thanks in advance
 

Maya142

Moderator
Staff member
Both my daughters felt REALLY tired the day after their infusions. They were just exhausted for 24 hours. My daughters had infusions at different hospitals but at both hospitals, the nurses said that some people do feel exhausted the day after the infusion. Others feel great.

For them the fatigue and just feeling generally awful lasted 24 hours. Then they felt more normal.

They did not have increased pain after infusions - that might just be a coincidence. I would just wait and watch. Some people feel better after the first dose, others take 3-4 infusions before they feel better. On the parents' forum, there are some parents who said it took their kids 6 months to respond fully to Remicade.

So I would not worry just yet. I would just keep an eye on things and hopefully you will start feeling better after you've had one or two more infusions.

Hang in there!
 
Thanks both, I’ve heard of people taking a few weeks or months to respond but I wasn’t expecting to get worse. It’s still early days though so maybe it’s just one of those things. I’m going back again next Friday so I’ll see if the same happens again, hopefully I’ll pick up a bit before then.

Thanks again :)
 
Hummmm .. I didn't want to see this as a result of Remicade! I get my first infusion this coming Friday (4.13) and am very nervous about it already!

Oy! Glad I am not superstitious! I just realized .. Friday the 13th! Going to be an interesting day as I have my first therapist appointment that morning and infusion that afternoon.

Jason
 
Hi Jason!

Try not to worry, I’m sure it’s just my temperamental body having a meltdown [emoji6]

I’ve had a couple of bad days since the first infusion but this week since I had the second I do feel as though my energy levels have increased a bit so I’m hoping that it’s now starting to work.

I know it’s a miracle drug for many so definitely worth giving it a try and don’t let my worry when I posted this put you off.

Take care!
 
I’ve had a couple of bad days since the first infusion but this week since I had the second I do feel as though my energy levels have increased a bit so I’m hoping that it’s now starting to work.

I know it’s a miracle drug for many so definitely worth giving it a try and don’t let my worry when I posted this put you off.
Glad you are feeling better.

I am not letting anything put me off. I am looking forward to getting better. My husband and I want to do things together and I just can't right now because I can't get too fare away from .. well, you know how it is with this disease.

Anyway, tomorrow afternoon is the day! Depending on how this goes and how I feel after, I may have to change what day of the week I go because I try to go to Synagogue on Friday night (not that I always make it, but I try).

Shalom!
Jason
 
Hi Jason

I was exhausted on the day of my first one but I was fine after that apart from this blip. All the best, let us know how it goes tomorrow [emoji4]
 
Well, first infusion went ok. Started getting a dang headache and feeling hot about 30 minutes into it. A little nausea and hunger followed. About 2 hours later .. the sleepiness hit .. and I slept hard until this morning.

Other than that .. pretty much a normal day!
 
Well, first infusion went ok. Started getting a dang headache and feeling hot about 30 minutes into it. A little nausea and hunger followed. About 2 hours later .. the sleepiness hit .. and I slept hard until this morning.



Other than that .. pretty much a normal day!


Glad to hear that, I was amazed at what a non event it was other than feeling wiped out afterwards. Best of luck, let’s hope it works it’s magic!
 
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