Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Omg my body hurts, is it remicade?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
halo52208
Regular Member
Joined : Jan 2012
Posts : 280
Posted 10/23/2013 8:11 AM (GMT -7)
I had my third treatment oct 2. I have heard of body aches from the remicade but couldn't find it on here. I am tapering off steroids and at 15 mg a day.

I still have D but no bleeding. The D is so bad it is stirring up my hemmroids. I almost wonder if my lialda is not working.

I have a call into the dr but need advice on what to ask him.

I am going to another dr to talk about surgery because I'm tired of being in pain and crapping all the time.

Ok dr just called and told me to go back to 20 mg steroid and they are upping my remicade.

So after all this, does the remicade cause body aches?
profile picture
Red_34
Forum Moderator
Joined : Apr 2004
Posts : 23581
Posted 10/23/2013 8:46 AM (GMT -7)
It did for me before I started premedicating. Do you do premeds before your infusions?
profile picture
halo52208
Regular Member
Joined : Jan 2012
Posts : 280
Posted 10/23/2013 8:59 AM (GMT -7)
No premeds

Usually my hip hurts 3 days after, then it goes away. I remember reading someone's joint hurt on a certain week after every time. But couldn't find it.
profile picture
MikeSoCal
Regular Member
Joined : Sep 2013
Posts : 303
Posted 10/23/2013 9:59 AM (GMT -7)
I am suffering from major joint/muscle pain. It comes on at night around 6 or 7 and then goes away around 8 or 9 in the morning. It is bad enough to where I can't stand up/walk sometimes. Mostly, it is just very painful and getting up/sitting down/walking are a big pain in the butt. Laying down though, no pain.

I don't know if this is from the Remicade, Prednisone, Asacol, Imuran or just the disease itself. All of those things can cause joint and muscle pain. I'm getting my 3rd Remi infusion this Friday, so I'm interested to see if it gets any better, or possibly worse. This just started about 3 weeks ago.
profile picture
flgirl10
Regular Member
Joined : Feb 2013
Posts : 79
Posted 10/23/2013 10:11 AM (GMT -7)
I definitely notice body aches the day of my infusion and days afterwards. It especially causes pain in my knees, hips, and hands/wrists. The nurse that gives me my remicade told me to drink extra water the day before your remicade, the day of, and the day after (so drink more than the normal 6-8 glasses or whatever it is lol). He said they've found that it helps with the body aches and flu like symptoms people get after remicade infusions. I also receive tylenol before my infusion and I usually take more later that day and the next day.

However, the body aches could be a combination or symptom of tapering from pred too. My body has never hurt as much as it did when I was on pred/tapering pred last year. I even went and saw a rheumatologist because I thought I had rheumatoid arthritis it hurt so bad!
I'd just tell your doctor about the pain you've been experiencing and ask what it could be caused by and what to take/do to help.

Hope you feel better!
profile picture
jc1973
Regular Member
Joined : Feb 2010
Posts : 269
Posted 10/23/2013 10:26 AM (GMT -7)
i just had my 3rd infusion 1 week ago. No aches to report. However, I did go through a lot of aches and pains when tapering off prednisone, so perhaps that is you source?
profile picture
Jay79
Regular Member
Joined : Jun 2011
Posts : 183
Posted 10/23/2013 10:58 AM (GMT -7)
When tapering off Prednisone my knees really hurt. But I've also had some joint pain for several days following a Remicade infusion. Can really feel it in my ankle which I broke a few years ago.
Also notice sensitive teeth for about a week, had the same side effect from Prednisone.
profile picture
Madcat25
Veteran Member
Joined : Oct 2012
Posts : 1116
Posted 10/23/2013 2:50 PM (GMT -7)
No pain for me but I do feel a bit stiff after my infusions.
profile picture
Red_34
Forum Moderator
Joined : Apr 2004
Posts : 23581
Posted 10/23/2013 3:00 PM (GMT -7)
Ask for premeds before your next infusion and see if they help. I take Benedryl and Solumedrol and I don't have the body pain anymore.
profile picture
halo52208
Regular Member
Joined : Jan 2012
Posts : 280
Posted 10/23/2013 5:24 PM (GMT -7)
I'll have to try the premeds, thanks.
profile picture
Dr-A
Veteran Member
Joined : Jul 2006
Posts : 2105
Posted 10/23/2013 5:32 PM (GMT -7)
When I tapered off pred I felt like I was dying. I have been lucky and never needed any premeds with remi.
profile picture
Tornado6
Veteran Member
Joined : Mar 2013
Posts : 1155
Posted 10/23/2013 5:41 PM (GMT -7)
I had more pains all over when I was on oral steroids. My infusions used to be a lot harder than they are now. I used to be really wiped out the day after, but it is no big deal now.
profile picture
Thoreau
Veteran Member
Joined : Jul 2009
Posts : 2139
Posted 10/23/2013 7:03 PM (GMT -7)
I have been on Remicade since January 2012, so about 21-22 months. The first 6-8 months my body was still healing and I wondered if the medicine was really working, but they had scoped it after two months and I showed a colon in remission.

I developed body aches with Remicade after about 6 months on the medicine. Starting August 2012 I began having different sick feelings that have bee attributed to almost anything from mono, to staph infection in my throat, to tonsillitis. I have run upwards of $10,000 in lab work trying to find the cause of these concerns, but none have come back with an answer. We just recently had the Remicade antibody test (called the AnswerIFX I believe) run, and it showed all my levels as allowable... and my doctor wants me to continue on the Remicade.

I delayed an infusion this spring by one week and my disease was back with a fight, and having that for only a couple short days made these body aches a walk in the park compared to that.

My body ache symptoms are as follows:
-I get horrible elbow aches if I try to do any repetitions such as lifting weight.
-I get transient joint pains, mainly in my fingers.
-I get these bad joint aches that used to go all over my body in a transitory fashion, but now remain mostly in my upper body and head.

I take two Tramadol (prescription pain reliever) every morning with tylenol and slowly enjoy my body coming out of the pain as it kicks in. Usually it is enough to last me all day unless things are really wearing on me such as stress.

Ask any questions you want, as I'm in your shoes and have spent hundreds of hours approaching the issue.

Best of luck.
profile picture
zoolandermsm
Regular Member
Joined : Jun 2013
Posts : 88
Posted 10/23/2013 9:55 PM (GMT -7)
I would bet the joint pain is from the Predninsone. It seems to be pretty common. Prednisone can cause bone loss, so you may want to get a bone density scan if you've been on it long. I believe it also can weaken muscles, tendons and ligaments. Your MD or ND should be able to recommend some supplements to help with the joints.

I've noticed greater nerve sensitivity when decreasing prednisone. I've noticed this in a lot of ways: Light sensitivity, hearing sensitivity, pain in teeth and gums, headaches. Hopefully, you'll notice the paid decline when you're off of the steroids.

I'd hate to see you give up on the Remicade so soon. I know a lot of folks who have had success with it. It takes a while to see results as Thorough stated above.
profile picture
Pirramimma
New Member
Joined : Apr 2012
Posts : 5
Posted 10/24/2013 2:04 AM (GMT -7)
I have been on remicade/infleximab now since March last year. Every 8 weeks.

Just recently after my last infusion I started aching all over, when that went away it turned into joint pain. It's generally ok during the day when I'm working but at night, especially in bed the pain is unbearable.

My wrists, fingers, shoulders, knees and ankles all hurt and are stiff. I feel like a cripple some nights.

Went to my gp a few weeks ago who did blood tests for all arthritis and came back clear.

I just had my appointment with my specialist yesterday and they done some blood tests and it seems I have remicade induced lupus.

Scary!!

Means I have to go back on prednisone (god help me) for 8 weeks. Starting with 30mg for 3 weeks then tapering off 5 every week after. I hope it works. Also on plaquenil

Post Edited (Pirramimma) : 10/24/2013 3:07:35 AM (GMT-6)

profile picture
halo52208
Regular Member
Joined : Jan 2012
Posts : 280
Posted 10/25/2013 7:47 AM (GMT -7)
My pain has gotten better after the dr had me go back to 20 mg prednisone. I have to stay on that until my D gets better. Hope that's not long.
profile picture
awareness72
Regular Member
Joined : Oct 2013
Posts : 89
Posted 10/25/2013 11:20 PM (GMT -7)
I don't take Remicade, however, was taking a few others like 6MP, Mesa, etc. I would sometimes get body aches and even fevers, and thought it was the 6MP. As a test, I went without drugs for about 3 months.. and still got the aches, fever esp after a flare up or D. bout.. so my conclusion is that just having inflamation like UC can cause aches etc., and it may not even be the meds. Of course when I'm in remission (if and when it happens by chance), then the aches are almost non-existent.
profile picture
Katmom
Veteran Member
Joined : Mar 2008
Posts : 1203
Posted 10/26/2013 10:40 AM (GMT -7)
No body aches on Remi, non stop ones after starting Tacrolimus. Other random baloney that makes daily living a chore.
Skin rashes, nausea,low grade fever, etc. Who knows with this crazy disease.
✚ New Topic ✚ Reply


More On Ulcerative Colitis

Taking Action Against Fatigue From Ulcerative Colitis And Crohn's

Taking Action Against Fatigue From Ulcerative Colitis And Crohn's

Living With An Ostomy

Living With An Ostomy


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2022 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.