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Remicade - now fever, aches and pains

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Posted 2/17/2011 1:42 AM (GMT 0)
Took 2nd dose of Remicade on Feb. 9. Aches/pains and fatigue started on Feb 12, but seemed manageable with a little extra sleep. Today, sleep still helped, but not as much. Now everything hurts even more (even my teeth hurt), I am more exhausted, and a fever has started tonight. No cough, runny nose, sore throat.

So is this a flu? A reaction to Remicade? A reaction to the Entocort taper?

I have a call into my GI, but won't hear from him until tomorrow.

Any Remi users have any advice?

Thanks!
Posted 2/17/2011 3:12 AM (GMT 0)
I hope it is just the flu. I get sick more often since they upped my remicade dose from 5 kg to 7.5 kg. I get achey,and I get joint pain, heartburn, and a rash from the remicade. I take prilosec, this helps with the heartburn, I take zyrtex for the itchy rash, I'm fine as long as I remember to take it, otherwise I get a rash. I get joint pain it is annoying but nothing really severe, it hurts, exspecially in the morning but the remicade has helped me. I have to take tylenol and hydrocrotisone before my infusions to help some of this. Do you take any of this before, it is called premedicated? I hope it is the flu for you and not the remicade because I know you said you were feeling better. Oh, the fatigue is my number one complaint about the remicade/uc, we don't know what causes my fatigue. It is horrible, I sleep 9-10 hrs a night and take a two hour nap everyday and I'm still exhausted. I can't consentrate it is like I'm in a fog. I hope you feel better.
Posted 2/17/2011 3:50 AM (GMT 0)
I do have the pre-meds: Benadryl, Tylenol, and Solumedrol (sp). I also hope that it is just the flu. The remi is working some, but not completely yet. I hope it is not a reaction or the "lupus-like" syndrome. After my first dose, I felt amazing. Improved energy, overall well being and UC symptoms improved. That only lasted about 9 days. Since the 2nd dose, things have only marginally improved, and then I have had this achy stuff.

I too hope it is just the flu.
Posted 2/17/2011 4:43 AM (GMT 0)
1. Let your dr. now ASAP

2. It's possible you immune system was compromised enough to let a flu creep in - don't give up Reimicade has been my wonder drug for 3 years now
Posted 2/17/2011 6:05 AM (GMT 0)
I actually have had the exact same problem. For the first few days after my first Remicade treatment I felt pretty good, and then all of a sudden I became achy. And I mean, not your normal, "my back is a little sore" kind of achy. Every muscle in my entire body feels as though its been worked out for hours on end. On top of that my joints are also sore. I also notice that my energy level has dropped drastically. Today I had a migraine and slept for a total of 15 hours. I don't think that it is the flu considering that we have the same symptoms and mine has been ongoing for about two weeks now. The only thing I have taken that helps with the pain is oxycodone and I am not comfortable taking that constantly. At first I thought that maybe I was having a reaction to some of the other medications that I was on but now I am beginning to think it is the Remicade.

Its so frustrating not being able to find something that works that doesn't make you feel horrible in other ways!

Posted 2/17/2011 1:46 PM (GMT 0)
Thank you all. This forum is awesome!

I have message into my Doctor from last night. His office will call today. They are really good about that.

But, get this. After lots of sleep, I feel perfectly fine this morning. This has happened in the past, and what normally happens is that as I will get tired in a couple of hours and the aches and pains will come back. Is this weird?

Also, last night was the first night of having a fever. Hopefully my Dr will have some advice. I am not ready to give up Remicade yet.
Posted 2/17/2011 7:09 PM (GMT 0)
So, after a few hours of being okay, I started to get tired again and the aches also came back. I took today off work, so I just went to sleep for 1.5 hours, and woke up feeling fine (for now).

Maybe it is a flu, and the extra sleep is just helping my body fight it off?

I haven't heard back from my Dr yet. Hope whatever it is, it just goes away.
Posted 2/19/2011 3:51 AM (GMT 0)
Okay, I also called my specialist because of having the similar symptoms. I have been feeling a bit better the past couple days but the aches and pains seem to come and go.

My specialist told me that this symptom is definitely NOT common within Remicade users and that a reaction of that type doesn't tend to happen to those on Remicade until they have been on it for a bit of time (and develop a reaction). I also get a fever while I am having the aches and pains and lose my appetite but it is definitely not the flu. He advised me that if after my next treatment the aches and pains get worse, that I stop the Remicade immediately. Apparently this reaction is quite serious if it is due to the Remicade because the joint pain and aches can get to the point where you are bedridden for days at a time. This is pretty disheartening (at least for myself) because this is my last option before I have to resort to surgery, so hopefully you are not at that point yet. My specialist also said that if the aches and pains remained at the same after my next treatment that I would basically just have to suck it up and push through months of treatments on pain medication.

However, he also advised that it could be a reaction to other medications (I am on prednisone) but I see that you are not. I have also been on Prednisone since September and never had a symptom like this so I do not think that is the issue.

I would be interested to hear what your doctor says once you hear back, especially if they consider that reaction to be serious.
Posted 2/19/2011 4:39 AM (GMT 0)
Here is my recent update (I posted a new topic):

" Just a quick update. After two days of rest, the aches/pains and exhaustion have disappeared entirely today. I feel awesome! UC symptoms are also much more improved since last night.

Fingers, toes and anything else crossed that the yuckiness is over, and that it was just a flu and not a Remicade reaction!

I did speak to my Dr yesterday and he suggested a "wait and see" approach until next Tuesday. At the same time, he has scheduled me for the antibody test to make sure I am tolerating the Remicade. Won't do that until March 3."

So far so good today. I have gone all day, with no symptoms. I hope it lasts. As mentioned, my Dr has ordered the antibodies test to make sure that I am tolerating the Remicade before he makes the decision to take me off. It seems to be working, so I really hope I don't have to go off of it. I believe this is also my last option before surgery. I am not sure if I could get Humira.

Would love to hear how you do after your next infusion. I didn't have any trouble with my first infusion.

One day at a time.....
Posted 2/19/2011 2:51 PM (GMT 0)
Grrrrrr...sick again today!!!! This time it feels more like a flu - fever, sore throat, and aches. Aches are different to the ones before - not quite as intense, and more muscular.

What is this? After being sick wit UC for the past 3 months, it was nice to finally feel better for a few days. So frustrating.

Back to bed for me. Another day that I can't do anything with my family. :((
Posted 2/19/2011 4:18 PM (GMT 0)
Good Morning to All!!!

I have had the 3 loading doses of Remicade. At about week 8 after the last loading dose, I started running fever EVERY night for almost 4 weeks. It would only come between midnight and 4 a.m. and it would be anywhere from 100 degrees to 103. I would wake up in a wet pool when the fever would break. It was all so bizarre. I had all sorts of blood work, chest x-rays, urinalysis, and nothing could be found wrong. My GP told me he felt it was a reaction to Remicade. I called the number that was on my Remicade information and found out that at week 8, that's when the medicine was at the highest concentration in my body.

I haven't run any fever for the last week and have felt so much better. I KNOW the Remicade is working for me, my symptons are all so much better. Still all there, but much better. I am going for infusion 4 on Tuesday. I have lost about 20 lbs., so I will make sure I am weighed and all proper procedures are followed before I get the Remicade. I am now only on Entocort and Azathioprine. I also do a Canasa suppository every day.

I hope all have a great weekend. I live in Misissippi and it is beautiful here today! 70 degrees and sunny!

 

Posted 2/20/2011 6:58 PM (GMT 0)
mom2panda, I was reading your first update and was excited to hear that you were feeling better but then saw that you are having problems again. I had minimal aches and pains the past couple days and then today I have been almost completely bedridden. I just took some pain medication so it is helping a little bit. The best thing I can suggest that has been helping me is Tylenol Muscle Aches and Body Pain.

My doctor didn't suggest an antibodies test for me so I think I might actually ask him about one.

It is definitely strange that the aches and pains seem to change from day to day. Today I have more muscle pain and really bad joint pain in my elbows. On other days, I had a different kind of achy pain all throughout my body. It seems we are in the same boat, especially with surgery being the next option. I wish you all the best. Keep us updated!!
Posted 2/20/2011 7:13 PM (GMT 0)
Thanks, JKM. I hope you are feeling better soon.

Today, I have the most wicked sore throat - feels like razors - and my glands in my neck are also quite tender to touch. My fever has broken, and the aches and pains are minimal, if at all.

I have to assume at this point that it is a flu, especially with the sore throat showing up. I would love to call my Dr., but it is a long weekend here, and he is not in until Tuesday. If it is still bad by tomorrow, I will go to the walk in just to make sure it is not strep throat, which I had in Nov.

I am sorry to hear that you are having a difficult day. The antibodies test has to be done specifically at 4 weeks after your last infusion, so do check with your Doctor.
Posted 2/20/2011 7:38 PM (GMT 0)
I had horrible joint pain from Remicade. It started about 5 days after my first infusion and got worse and worse. Made me writhe around on the floor when I had the most extreme bouts, and I couldn't even walk. No pain meds helped. Like you describe, it came and went... going to different parts of my body on different days. It was worse at night when it was excruciating and stabbing, and then turned into a more achy pain during the day. Some days it wasn't bad, but it always returned eventually. It was so bad for me that I cancelled my second infusion and decided to get surgery. I just couldn't have tolerated that degree of pain long term, and I did not want to take a chance at adding even more of the drug to my system. I actually worried that the pain would be lasting and never go away. Fortunately, the Remicade seemed to get out of my system around 8 weeks and the pain slowly went away. It has not returned.

My GI confirmed that Remicade can cause joint pain. I did get a test for drug-induced lupus, but that was negative. I never got the antibody test because I pretty much decided I wanted surgery. Whether or not an antibody test came back positive or negative, I knew I never wanted to take that drug again. It totally ruined my quality of life when I was on it even more than UC.

I hope your pain is cause by something else and that Remicade helps you, but please do not fear surgery too much if it comes to that. No surgical pain came even close to the horrendous pain I felt on Remicade. I chose a permanent ileostomy and cannot believe how great I feel three months post-surgery. I am off of all meds and eating most things again. The adjustment to an ostomy pouch has gone very smoothly for me once I got used to it. Best of luck to you!
Posted 2/20/2011 7:51 PM (GMT 0)
mom2panda, I am sorry to hear you're still feeling sick and that you've come down with a flu. I too have a flu and a terrible sore throat. It's very annoying. I hope we both heal quickly.
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