First infusion terrible reaction help!

[NancyHany]

Hey I had my first infusion today and 4 hours later I started getting a fever which is now 40c my body hurts horribly i'm hardly typing it hurts or can see the screen clearly . Doctor made me give myself a mild pain killer shot and he disappeared..my nurse is following up with me but she doesnt know what to say or do...I keep on fading in and out its hard too much pain....please help...

 

[Grumbletum]

Nancy, has the nurse told you take Paracetamol or something to take the temperature down? Mine went up during infusions and they told me to take it every four hours fir the rest of the day. If it persists, you need to get to the ER or call an ambulance.
Please let us know how you get on.

 

[NancyHany]

I just woke up, I was so tired I just slept. I took Paracetamol last night about 6 500mg pills. My husband used fever cooling pads on my forehead and hot water flasks on all my joints and something very strong for the pain, I ended up getting soaked in sweat to the point my husband got lot of towels to dry me and sleep on and that's pretty much the last I remember, I slept like a log. Currently the pain in my joints is mostly only waist down, my knees ache badly , my vision is still bit blurry and I feel feverish though my temperature now is 36.6. an improvement of last night though.
I guess I will just rest in bed and hope it clears out if it went back as it was last night I will be rushing to the ER not ready to go through this pain again!

 

[SarahAnne]

Nancy, how are you doing?

So sorry you had a reaction, hope your doctor can get you all sorted out.

Best of luck.

 

[Grumbletum]

Nancy, I really don't like the sound of those symptoms :-( I think you need to see someone as soon as you can to see if this is an allergic reaction or not.

 

[NancyHany]

The reaction ended totally around 3 days after the infusion I started to feel like normal again. My GI wants me to take pred before the infusion and hopefully that will stop this reaction from re-occurring, though I will have to pull through pred's side effects as well.

My ultra sound showed enlarged lymph nodes in my abdomen, my blood test came back with elevated SGPT, ESR, CRP ( they didn't change much before and after Remicade) Absolute lymphocytosis,absolute eosinophilia and sky high WBC. Low TSH as well.
The doctor sent me for a CT scan ASAP, I'm trying to find an appointment for it tomorrow, hopefully.

My second infusion is next Saturday and I'm really afraid. I'll be taking it in the ER so they can close monitor anything.

If anyone has any opinion please share it with me as I'm really clueless.

 

[NancyHany]

I forgot to mention my doctor suggested Methotrexate though he said "I will tell you honestly from now that its side effects are horrible" I don't know how he expects me to try it after he said that

 

[glum chump]

Hi Nancy:

I would also recommend taking Benadryl before your injection as well as the steroid they'll give you. I had allergic reactions to Remicade, and they would give me a Benadryl IV along with the steroid prior to starting the infusion. That might help with the reaction you're having.

Good luck...decisions around which meds to take is never easy given the side effect trade off we have to make...

Kismet

 

[NancyHany]

I had my second infusion, serum sickness happened again the lowest point was my blood pressure hitting 50/35 and my temperature was 38C. The pain was more manageable maybe because this time after my infusion I went straight to bed and I took paracetamol with pain killers. I'm better today temperature is down to 37.4C and my blood pressure is 90/70 and I was able to stand up long enough to take a shower.

Kismet : you are absolutely right. I know I'm at risk by those side effects but this is the first time something gives me relief even if it's slight (hopefully more in the future) the feeling of relief even for a while is worth it.

 

[RAISINGMI]

Nancy - the first few years my son was getting remicade, they gave him an oral dose of Bendaryl and Tylenol prior to the IV. It made him very sleepy afterward, but he never had a reaction or fever! I'm sorry you've had such a tough time of it, but hopefully these suggestions would help. Good luck!!

 

[SdN]

That's very scary Nancy I'm sorry you had to go through that pain! I too take Benadryl and Tylenol before infusions, it makes me sleepy but I haven't had a bad reaction yet. I do feel itchy all the time but I take Allegra and it's not a problem. I always schedule to have the entire day off work and I take it easy after the infusion and sleep if I need to.

 

[NancyHany]

Today I woke up fine I just had 3 bowl movements in diarrhea but still only 3! far cry from my morning 6 to 8!

Last night I had strange bouts of left sided pain, actually my left arm kept hurting too much, I have some heart problems history so my husband wants me to go for an EKG just to be sure, though personally I just want to wait it out.

They do give me Avil shot beforehand ( pheniramine maleate) and paracetamol and I'm on daily routine of allergy medication.

Here they don't have much of information about Remicade or what to do in case it goes wrong. The rep of Remicade in Egypt who administer the dosages isn't even a doctor she's a pharmacist. I have a great GI currently who really cares about my case unfortunately he is always really busy.

SdN: I actually take 3 days off afterwards from anything, by the forth day (which is today for me) I can function normally

 

[tots]

I take Benedryl (2 pills)- Zyrtec (1 pill)- Tylenol (1 pill)- and Hydrocortizone (IV before my Remicade). And that has helped alot with the 2nd and 3rd infusion. The first infusion
made me sick- but, not that sick!

I hope things turn around quickly for you!!

Lauren