Remicade and leg pains?

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/19/2007 5:56 AM (GMT -7)   
I got Remicade again yesterday even though I might be developing antiobodies against it.  I have been having horrible calf pains since 4pm yesterday and headache.  I also started taking Cymbalta 3 days ago, but didn't have this pain until after the Remicade.  I have been up all night and took 1/2 a Darvocet which didnt touch the pain.  It hurts in any positon, laying down, sitting, standing.  I also have tingling in my feet and hands.  I will call my GI when he gets in the office if he's not on vacation.  Has anyone else had this pain after Remicade or heard of this?


Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica

Post Edited (princesscolon) : 12/19/2007 6:46:33 AM (GMT-7)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/19/2007 7:27 AM (GMT -7)   
AGGHHHH, IT HURTS SOO MUCH!!!!!!!!
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/19/2007 7:43 AM (GMT -7)   
I just talked to the doctor, he said it is probably a delayed reaction to the Remicade but wants me to come in to check for thrombosis. If I dont sleep some though, I am afraid I might pass out at the wheel.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


Pessimist
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 12/19/2007 11:16 AM (GMT -7)   

After lurking here for the past several months, your post finally compelled me to register. 

 

I have also had some recent challenges that I believe are due to the Remicade.  After my last infusion a few weeks ago (my third so far), I have had a persistent headache.  I have had migraines for about 20 years, but this is very different.  The headache has been almost constant and I am taking Imitrex much more often than I should.  My GI insists that the headache is not related to the Remicade.  I called Centocor (manufacturer of Remicade) and they would not acknowledge Remicade causing any more headaches than a placebo.  My regular doctor just suggests that I keep taking migraine medication.

 

Could it be that Remicade impacts serotonin levels?  I have heard that serotonin is highly concentrated in the gastrointestinal tract. 

 

Princesscolon, what exactly did your doctor say about the pain being related to Remicade?

 

Post Edited (Pessimist) : 12/19/2007 11:25:05 AM (GMT-7)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/19/2007 11:28 AM (GMT -7)   

Adrienne, I have not had any side effects from the Remi, but thrombosis is a side effect, so good that your doc is checking for that.

Pessimist; I've heard of others having a slight headache after the Remi, but I have not experienced that either. Do they give you any pre-meds like Tylenol or Benydryl before you have the infusion? I take a Tylenol and a Claritan before I start, and maybe this helps.

Hope both of you are feeling better soon -- let us know what the doc says.


Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/19/2007 2:48 PM (GMT -7)   

The doctor said that I am having a reaction because I have developed antibodies against the Remicade and it could be dangerous for me to take it again.  After the pain I have experienced, I don't mind at all.  It is really severe pain.  I don't remember the word he said, but it was something in the muscles, not thrombosis.   He said it should go away by 24 hours.  I HOPE PLEASE GOD!   Now I can never take Remicade again, and it wasn't 100% helping, but it helped more than anything else has.  Next up is for me to try Humira, then if that doesn't work, a resection, if that's no good, the "bag"...  I just want to be healthy...

Pessimist, welcome.  When I searched "Remicade" and "headaches", several people had complaints about migranes and it is listed as a possible side effect on some sites.  When I was taking Rowasa enemas, I was having horrible migraines daily and my doctor said it meant I was not tolerating it so I had to stop them.  I guess it's different with the Remicade because it's "one of the last resorts" so doctors don't want you to give up on it too soon.  Plus, you can never take it again if you quit it.  So, the doctors write off the side effects until they become unbearable to you.  Your body may be trying to tell you the Remicade is not agreeing with you.  Have you had an improvement in your UC since Remicade?  I hope you stay on the forum to share your experiences with us.

Carol, thank you for your concerns.  I hope you never have to go through this.  Remicade was working pretty good till he doubled the dosage so be careful.

Adrienne


Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/19/2007 3:34 PM (GMT -7)   
Princess; now that I think about it, my late husband was also having a double dose of the Remi and he had the headaches, but I can't remember him saying anything about the joint pains. I'm glad the doc is being so careful; let's hope the Humira gives you some relief. If not, it sounds like there are many on here who have had great success with the surgery. Take care, and hope that the pain goes away very soon for you -- I can't imagine, it must be awful. :-(

Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 12/19/2007 5:14 PM (GMT -7)   
i have leg pains lately and terrible calf pains too.
but im not on and have never taken remicade.

im only on prednisone.
i thought it was from that..???
are you on pred at all?
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure.
last 4 days have been fabulous with no UC symptoms at all = remission (yey!) 
tapering pred = now on 20mg prednisone 1x day with breakfast
1000mg mesalazine 2x day - 1/2 endone every 6 12 hours for pain (weaning)
calicim, inner health plus (probiotic), fentalyn patch for pain and to wean off oxycodone
VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 
 


Pessimist
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 12/19/2007 5:52 PM (GMT -7)   

Actually, I do not believe the Remicade has helped me in any measurable way.  My symptoms have not changed much at all since I began the infusions.  I’ve been doing pretty well even before the infusions began, so it was unlikely that I would see a dramatic improvement anyway.  If I continue to do well after I have finished tapering Prednisone, I will probably continue with Remicade. 

 

I have changed meds enough times that I really cannot determine which ones, if any, are actually helping.  But I’ll get into that in another thread……

 

I find it interesting that people here found that headaches are a common problem with Remicade, yet my doctors and Centocor acted like I was crazy for thinking there was a connection. 

 

Humira is very similar to Remicade, but it is a better and “cleaner” drug.  Hopefully you will have some luck with it. 

 


M-39, UC Diagnosed June 2007

Other stuff:  Migraines/headaches, high blood pressure, essential tremor

Previous Meds: Colazol (caused pancreatitis), antibiotics, Prednisone (several cycles 20mg/day)

Current Meds: Remicade beginning in Oct ‘07, various vitamins, Imitrex, Lortab, Lisinopril


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/19/2007 6:50 PM (GMT -7)   
I know that this might sound crazy, but could it be the other meds all of you are taking and the combo of Remi with it? Have you asked your doc or pharmacist? Sometimes I even talk to my pharmacist before I start taking a med and let them know I'm on the Remi. The pharmacists' are really knowledgeable, and I always feel more comfortable explaining to them that I'm on Remi. They seem to know the drug interactions.
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/19/2007 7:47 PM (GMT -7)   
I do get occasional leg pains, or cramps which hurt a lot. I try to get more potassium when it happens and it seems to help. This was doubled-over-I am dying pain. I don't know about the drug interactions... the only new thing I am taking is Cymbalta and it was prescribed by the rheumatoligist so I doubt it was that. I looked up serious side effects of Remicade and calf pain was on there. It all makes sense. In August, I started getting twice the dose of Remicade. In September, I couldn't move my neck, it was so painful. Thought it was just a pulled muscle, never thought of Remicade... In October, I had bad bladder pains, was sure it was an infection, it wasn't. I never found out what the pain was and still have pelvic pain... In November, I got severe joint pains. When I went to the Arthritis doc, he said I developed psoriatic arthritis. I asked what the treatment was, he said Remicade. I was like WHAT? How would I develop arthritis while ON double dose of Remicade? Now I think since I got the higher dose, my body reacted by making the antibodies. And, all these months I thought I was falling apart, it was the Remicade.... I hope.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/19/2007 8:28 PM (GMT -7)   
Aw Princess, I wish I had the answer to the way our bodies work and how the meds interact. It's so crazy isn't it? I hope that you find peace and healing soon.
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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