Getting sick before next infusion

[Starla86]

So I have my 3rd infusion in 3 days and I started having D about 4 days ago. Im just wondering if anyone else experiences flare like symptoms right before their next infusion? Im curious if the Remicade is getting out of my system to soon? My Dr did tell me that after my first couple of doses she would have me back in to see if I needed to go every 6 or 8 weeks. Any input would be great. Thanks

 

[JSOAngel]

That has happened to me in the past, and my doctor had to up my Remicade dose. All better now. Perhaps your meds just need to be adjusted...

 

[Christie]

Hi my third one is due in a week and I have noticed a few symptoms!

 

[Meredith]

Hi,
I was getting Remicade every 8 weeks at first. I would start to notice symptoms of flare ups when it was getting close to my next infusion. My doc changed me to every 6 weeks and increased my dosage. That has helped tremendously.

 

[Lydia]

I get mine every 7 weeks, because I was having breakthrough symptoms before the 8th week.

 

[Saphira]

Interesting, Brandon had his first infusion 12 days ago and has been symptom free for 11 days, he had D today and the headache came back. The eyes are still not right, they are really red watery and he was sneezing today, but no fever. The blurred vision has gone but still reports color changes. We aren't scheduled until Friday for the 2nd infusion.
Trina

 

[social me]

I was going to call doc today I recvd REemicade 5-6 weeks ago and last week the big d and vomiting started up again. I think I need to be at 6 instead of 8. Your not alone.

 

[davidr]

The same thing happened to me. Remicade started losing its efficacy after 6 months or so, and my "good" period kept getting shorter and shorter. After another 6 months, it was only lasting 4 weeks or so. The doc said I was developing a resistance to Remicade so he had me do the induction process again (0-2-6 wks) and put me on azathioprine to prevent my immune system from building a resistance again. I've been in remission for 2 years since then, so I guess it worked!

--------------
Currently taking:

Remicade every 8 weeks
50 mg azathioprine (Imuran) every day

 

[Lydia]

I am starting to think I need every 6 weeks as well. I am not lasting as long as I wuold like. Symptoms are not too bad, but I do feel a bit inflammed.

 

[SarahAnne]

I was going to call doc today I recvd REemicade 5-6 weeks ago and last week the big d and vomiting started up again. I think I need to be at 6 instead of 8. Your not alone.

Yes! Same problem here! I was on Humira and it stopped working. So my GI put me on Remicade. I had my 1st infusion, then my next was scheduled for 8 wks. I thought that was weird, and I started having pain and vomiting at about week 4. I had my 2nd dose at week 7 (that is as early as they would get me in), and when I saw my doctor he was surprised at my weight loss! I told him I was having breakthrough symptoms at 4/5 wks, and the humira wasn't working for months beforehand. He put me on 30mg of pred and I have an abdominal ultrasound tomorrow.

What is it going to take to get this guy to just give me the remi sooner? I'm tired of vomiting and losing weight. I feel like someone's freaky science experiment.:voodoo:

 

[Lisa]

Sarah - the loading dosage for the remicade is NOT to start at 8 weeks apart! I would ask the doc why that schedule - unless maybe because you were already on humira?

 

[chanel_loraine]

I am going in for my third infusion on Tuesday. My last one was last Tuesday and the first was 2 weeks before while I was an inpatient. Hopefully I should start going every 8 weeks after the next infusion and I am praying that I can make it 8 weeks without a flare up. I noticed the night before my last infusion that my abdominal cramping was getting worse and I had some diarrhea. While I was having my infusion I was in so much pain. I can tolerate pain pretty well but it was to the point that I was asking the outpatient clinic to please give me some pain meds. I felt wiped out after the infusion. And 3 days later on Friday, I had the worst case of diarrhea I had ever experienced. Definitely scared me and had me in bed exhausted all weekend long. As of today I am feeling well (not where I want to be but not where I used to be). The cramping comes and goes but not as constant as it was. I am hoping and praying that I can stay well up until and after Tuesday's remicade infusion. Does anyone else have constant abdominal cramping? My doctor is unsure but thinks it might be a case of my intestines still being sensitive to the digestion process. I can also feel the pain in my ileum from time to time.

 

[Nosick]

I was on Remicade for two years and had a similar experience. The infusions started to weaken about 7 weeks into it, then 6 then they were lasting about 3 or 4 weeks.

They did a blood test before my next infusion and found that there was no Remicade in my system. Then, my doctor tried to switch me to Humera but my insurance company wouldn't go for it.

I think the blood test is the best way to find if the infusions are working for you.

 

[Bob the Fish]

I have had an almost constant flare-up since January. Three weeks ago my grandson (7th grade) was invited to a football combine in NJ & I was suppose to go with him. Had to back out because of pain & flare-up. Last week was suppose to see another grandson go to his 1st prom, couldn't go. We had plans to go to NYC to see granddaughter graduate from St. John's Univ. I swore I was going if I had to wear diapers. Well- I had my 1st Remicade infusion on Monday 6/6, went home & sleep for 12 hours. Next day woke up pain free & pretty much under control. Drove from Watertown, NY to NYC (about 6 hours) on Wed. & drove home on Thurs and no problems, no need for sudden stops and felt better than I have in 5 months. I don't know if it's the Remicade or Not (I think it is) but I'm ready for my next dose of Krytonite(??) because I'm feeling like Superman!! Now if I could just fly!

 

[Maryam]

So I have my 3rd infusion in 3 days and I started having D about 4 days ago. Im just wondering if anyone else experiences flare like symptoms right before their next infusion? Im curious if the Remicade is getting out of my system to soon? My Dr did tell me that after my first couple of doses she would have me back in to see if I needed to go every 6 or 8 weeks. Any input would be great. Thanks

My husband gets his infusion every 7 week. yes he does get symptoms before his next infusion fever, body pain, very tired. so I think it is normal and expected that you don't feel 100 % yourself till you get the infusion

 

[SarahAnne]

Sarah - the loading dosage for the remicade is NOT to start at 8 weeks apart! I would ask the doc why that schedule - unless maybe because you were already on humira?

I was on Humira before the Remicade, so I guess that was his thinking, that I didn't need the loading dose. I am frustrated because I feel like he doesn't listen sometimes. We switched because the Humira didn't seem to be working anymore. I have an appointment the end of this month, no more remi tx before then. He put me on pred and ordered an abdominal ultrasound and bloodwork. Maybe he thinks it is just inflammation that is causing my problems. The stricture causing the obstruction is my big problem and I don't think the pred will do anything for that. Maybe he's trying to reduce inflammation in a prelude to surgery. I'm pretty sure I'll have to call his office before my appointment. I'm sure the receptionist there is getting tired of hearing from me.

 

[Sha0913]

When I was on 8 week infussions I would feel my symptoms come back at about 6 1/2 weeks, and I told my doctor and she put me on 6 weeks and I don't feel it leave like I used to.