My sideffects!!!

[Tippie]

Hello, my name is Tippie. I had a bad reaction on my 5th treatment. My first 2 were done while I was in the hospital and the other 2 were done in a clinic. I live 3 hours from the hospital so I got approved for home infusions. The 1st four( 2 hours) went great no problems. On the5th the first 15 min went great started out at 10 then the nurse up it 150. Immediately my hand started burning ( took benadryl before starting) and itching. We stopped the infusion and I took more benadryl. Waited 30 min and started again slowly getting back up to 150. No more problems, just had a bad headache later. Took Tylenol and went to bed about 10. Woke up at 3 tried to get out of bed but my body was hurting by 6 o'clock I could not move my husband had to carry me to the bathroom. It took almost 48 hours for me to walk. I am still having problems with my left leg. The doctor said I would be getting iv benadryl and steroids on my next infusion which is in 7 weeks. I am scared and do not want to do another infusion. Anybody else have a bad reaction like this??

 

[my little penguin]

Please see neuro if your still having trouble with your left leg
My kiddo had multiple allergic reactions to remicade infusions at age 9
He stayed on remicade 8 months total (infusions every 6 weeks )
First reaction they gave Benadryl
Second reaction pretreated with Benadryl/steriods
Still had tongue tingling

resulted in ER visit
Dermatologist confirmed reaction on his tongue could be seen
Tongue issues lasted 48 hours
Gi ordered brain mri -remicade can cause brain spinal cord nerve issues especially if reacting .
His brain mri was clear
So he started humira at the age of 9(he is now 20)
No more reactions to humira
But is on Stelara since that stopped workin around 5 years later

 

[Delta_hippo]

I had problems with remicade (although it was a knock off version)
First infusion okay but got a weird rash all over my torso for a few days after - okay
Second infusion just felt grotty throughout so they slowed it down
Third infusion they did very slowly but still felt really crap and developed a fever during the infusion- the nurses weren’t sure whether to let me go home eventually said I could- fever lasted a few days - I said to the doctor I don’t want that again he agreed to switch drugs
It is easier in the UK as you don’t have to fight insurance
The doctor probably also influenced by fact remicade wasn’t bringing calprotectin score down from sky high although it did sort CRP from 40 something to 2 in first infusion
Good luck finding something that works and your body will tolerate

 

[Smithe1]

Hello, my name is Tippie. I had a bad reaction on my 5th treatment. My first 2 were done while I was in the hospital and the other 2 were done in a clinic. I live 3 hours from the hospital so I got approved for home infusions. The 1st four( 2 hours) went great no problems. On the5th the first 15 min went great started out at 10 then the nurse up it 150. Immediately my hand started burning ( took benadryl before starting) and itching. We stopped the infusion and I took more benadryl. Waited 30 min and started again slowly getting back up to 150. No more problems, just had a bad headache later. Took Tylenol and went to bed about 10. Woke up at 3 tried to get out of bed but my body was hurting by 6 o'clock I could not move my husband had to carry me to the bathroom. It took almost 48 hours for me to walk. I am still having problems with my left leg. The doctor said I would be getting iv benadryl and steroids on my next infusion which is in 7 weeks. I am scared and do not want to do another infusion. Anybody else have a bad reaction like this??

Hi Tippie, thank you for sharing.

 

[my little penguin]

@Tippie
How are you holding up ?

 

[Tippie]

My hair is now falling out. The doctor has stopped the infusions and soon I will be taking pills. Hopefully this goes better!!!