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Posted 12/31/2009 2:18 PM (GMT 0)
Just wondering if its possible to be VERY sore a week after an infusion. I have done fine up until last night and then serious muscle pain started. At first I thought it was from returning to work from the holidays. I do have very physical job, but actually yesterday I didn't have to do alot. Usually it just doesn't do that to me after I've been off for a while...I just hurt so bad and move like I am 100 yrs old and I'm only 30...Any input would be greatly appreciated...Thanks
Posted 12/31/2009 3:32 PM (GMT 0)
I get flu like symptoms after my remicade. I had my infusion(my 5th or 6th I lost track) on Wed (dec 23rd). I feel very weak and shaky afterwards for a couple of weeks. I also get very bad chest pain(we think it is heart burn). This has all happened since my first infusion. I also am very tired after. I'm always tired though. They run my drip really slow(at 65) so I'm there for about 506 hours. I'm premedicated before I go to (tylenol and hydrocrotisone). Remicade for me has been a God send. It started working my last infusion and it has worked wonders. I figure it is worth the soreness and everything else. My symptoms last about 2-3 weeks after my infusions. I was also told to drink alot of water. Good luck I hope remicade works for you. Oh I also get a sore throat and rash. Zantac works wonders but if I forget to take it I start itching. Good Luck!!!
Posted 12/31/2009 9:50 PM (GMT 0)
     I had my third infusion this morning.   When the nurse gave me the Benedryl I thought I was going to pass out.  Weird because after the Benedryl was inserted during my first two infusions I just felt a little loopy with a strange sensation in my sinuses.  She said it was 50 mgm of Benedryl.  Isn't that a bit much?  I weigh about 125 lbs and am 5 ft 2 in.  My infusion was 9:30 this a.m. and it is now 4:45 p.m..  I slept two hours this afternoon and still feel exhausted.  My chest felt strange too, like I couldn't get my breath.  It passed over pretty quickly after the saline started to drip through.  When the next patient came in, a young girl about my height but a bit heavier, she had the same reaction to the Benedryl as I had!!

The nurse said that next time she will try giving me half the dose of Benedryl.  Well, I sure hope so!  Remicade has helped my ulcerative proctitis immensely!!!:-)

Posted 12/31/2009 10:15 PM (GMT 0)
christine1946-  I had the same reaction to benedryl.  They were going to give me 50 but they got 25 in and I was like you need to stop.  I too felt like I was going to pass out.  For chest pain maybe try Prilosec.  I always have chest pain. They did heart tests and blood work and x-rays to make sure it wasn't my heart.  I have only gotten them since the remicade.  I still get them.  I just deal with the pain because the remi is working for me.  I take hyrocrotisone now instead of benedryl.  They give me it before the infusion.  Good Luck!!!
Posted 1/1/2010 3:15 AM (GMT 0)
Hi there

i have had 5 infusions of remicade so far and overall it has been amazing in taking care of my UC symptoms... prednisone had stopped working for me so this was the next choice.  i have been having a lot of muscle and joint pain for the last 3 infusions.  I am 37 and i too feel like a 100 year old in my movements.  I have mentioned it to my doc but they are just keeping an eye on it for now.  I would take the pain over having the flare ups but i really would like to rid myself of the muscle pain.    Does anyone have any ideas?

 

Posted 1/1/2010 12:27 PM (GMT 0)
     So far, I don't have any joint pains.  They give Remi to RA patients, so joint pain is sort of odd, isn't it?  The nurse gives me two tylenol tablets and then the Benedryl.  No wonder I feel like I am looped afterwards.tongue
Posted 1/1/2010 4:19 PM (GMT 0)
bk1579, the muscle pain could be a reaction to the Remicade. Make sure you tell your GI, and s/he may want to slow down the infusion and premedicate you longer. (I had chest pains after my infusion, and now my infusions are at least 4 hours and I have to take Zyrtec a week before and week after my infusion).

If Benadryl makes you all loopy and sleepy, you can always ask for Zyrtec instead.

UC20years, when I had joint pain last year, my GI sent me to a rheumy to be checked out for lupus (it was an ANA blood test). Joint pain is a symptom of lupus and sometimes Remicade can cause it. It might be a good idea to check it out just in case. (I didn't have lupus)
Posted 1/1/2010 10:04 PM (GMT 0)
I used to take Benedryl & would get very drowsey. Now I take Claritin before my infusion & feel fine after the IV. No soreness or drowsiness.
Posted 1/2/2010 4:08 AM (GMT 0)
I have been very sore (increasingly so) since starting Remicade 2 years ago. Specifically, I have muscle aches for approx 3 days after the infusion and pretty painful bursitis which only fades away immediately before my next scheduled infusion. My GI thinks that I have developed antibodies to Remicade and has led to my symptoms and a recent lab test for human-mouse antibodies supports this. There have been several published case studies of anatomical bursitis(specifically rotator cuff syndrome) so many of those who have experienced "joint pains" may actually be suffering from mistaken bursitis. That being said, Remicade has been a godsend despite the side effects as nothing else was able to get me into remission and return me to my life.
Posted 1/2/2010 2:42 PM (GMT 0)

Thanks everyone for your responses...I did have tylenol and benedryl before my infusion....Yes, the benedryl definately makes me very groggy and sleepy...I came home and slept 3 hrs and was pretty much normal...The evening after, my legs got achy and feeling as if I had been standing all day...That went away over the night, I woke up and felt fine...I went a whole week with no signs of any reaction, then I was so sore!!! I kept trying to put pieces together to figure out what was causing it...In some way I feel it was returning to work after having a 1 1/2 week off, but I usually dont get like that...Maybe some sorness, but not like I experienced this time...Even the joint in the left side of my jaw was sore...I blamed that on me jabbing the back of my throat with a sharp potato chip...LOL...It was just to weird...Anyway, I called the dr. and they talked to a few of the other dr since mine wasn't there and they recommended me not getting my next infusion...I don't know what will be next...Any ideas?? I don't feel I have a severe case of UC, just can't get the meds to work unless its pred. What will be next for me?

Posted 1/3/2010 9:35 PM (GMT 0)
I haven't been given benedryl since my first infusion. Once it was apparent I was not allergic to the Remicade, it was not necessary. Try going without it.
Posted 12/25/2015 12:50 AM (GMT 0)
When i read this I thought I typed this one myself, Same type of job, very physical, I used to do 8 hours of heavy lifting and now 4 hours of medium lifting is causing pains I never had before. I did a web search and sounds like its the remicade. Ya its great to save our lives, but it also feels like it limits what I can do now. Guess i need to change careers to a less physical job. Only different between his post and my experience is with me, it can be any time, not just the week after infusion. I find things are good the first two weeks after

<< VERY sore a week after an infusion. serious muscle pain started. thought it was from returning to work, have very physical job, move like I am 100 yrs old and I'm only 30 >>
Posted 12/25/2015 1:33 AM (GMT 0)
get tested for remicade antibodies
also, have you been on steroids recently
Posted 12/25/2015 6:58 AM (GMT 0)
I take Claritan before my infusions.

Benedryl would knock me out after I got home from my infusion and Id be worthless the rest of the day. Claritan doesnt do that.

In regards to the threa topic, I too experience joint/muscle aches that I'm pretty sure is from the remicade but it usually doesnt last long and shows up about a week or so after an infusion.

I also get headaches a couple days after an infusion that tend to last about two days.
Posted 12/26/2015 2:51 AM (GMT 0)
Ask your doc to put you on Solumedrol a half hour before your infusion. I used to get extreme pain in my joints and muscles after each infusion until he put me on the Solumedrol before my infusion. I am also on Benedryl as my premed but I contribute my pain free'ness now to the Solumedrol. I've been on Remi for 4 years now and since I do this premed combo, I haven't had any problem since.
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