I feel like I am dying, I think it's from the Remicade?

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/26/2007 8:24 PM (GMT -7)   
It is so painful to write this.  My fingers arre killing me.  My arms are soo sore.  My legs feel so heavy.  My GI SWEARS its not the Remicade, says it's just arthritis and prescribed me Prednisone for a week.  I started having EXTREME leg cramps about 5 hours after my infusion last Tuesday.  They lessened in about 48 hours, but I still have them a few times a day, they feel like a tightening of calf and charley horse.  Then, on Christmas Eve, my right arm started to ache like crazy, then I vomited.  I took Darvocets and Tylenol pm which did not touch the pain.  (The Darvocet right before bed may have been what made me puke).  Christmas day I took more pain killers and then my other arm started aching.  Today I woke up with my fingers killing me, thigh cramps, both arms aching. Intense pain.  I calledmy GI and he said he has never heard of a reaction to Remicade for more than 24-48 hours and it is just arthritis.  My Aunt has Rheumatoid Arthritis so I called her and asked if she really feels this horrible ever.  She says she has never felt bad enough to not function, like i cannot shower, drive or anything, she says i need to try to keep moving against the pain.  I told her that is not possible due to the fact that I feel like I am dying.  GI says the Prednisone should help right away... I just want this nightmare over and if I dont feel better soon i am going to the hospital.  Sorry I am not trying to scare the people taking Remicade, I took it about 3 years till this happened.  It was after I got the higher doseage I started having small problems and I didn't even think of a tie to Remicade till recent.  First it was an extremely stiff neck and pain in Sept.  In October it was severe pelvic pain.  In November it was extreme joint pain.  Now all these pains.  My GI does agree that I had a reaction and will no longer take it but I also feel like he thinks I am crazy.  I just wanted to share this and anyone whowants to add anything I appreciate it being as I cant do much else at this time.
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 ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/26/2007 9:02 PM (GMT -7)   
sorry to hear this. I hope you feel better soon. my fiance works in arthritis research, and though he works on OA, not RA, my understanding is that both can be very debilitating. I actually don't think it is unheard of for arthiritis to cause immobility of the sort you're discribing. not to say you have arthritis, just wanted to point that out. I really hope you feel better soon.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent)
Various vitamins, a probiotic and fish oil.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/26/2007 9:14 PM (GMT -7)   
Princess, I'm taking Remi too, and have for 2 1/2 years without any kind of reaction so far. Please check with your pharmacist and make sure that the other meds you are taking aren't interacting with each other. It may also be arthritis, but gosh, I'm a little worried about your condition and pain. But my nephew has the same arthritis you do, and he has the swelling of the hands and terrible joint pain.

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
 
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 12/27/2007 3:42 PM (GMT -7)   
I have arthritis and when I get knots in my arches and my ankles swell there has been times my husband has had to carry me to the bathroom. Are I have had to crawl there. so yes it can be that bad .But I have had it sense about 1987. It just seems to get worse with age and the weather bothers mine alot. the cold and rain makes it worse.Does it get better after moving around threw out the day dose it limber up? If so could be arthritis.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


RMA
Regular Member


Date Joined Aug 2004
Total Posts : 79
   Posted 12/27/2007 4:18 PM (GMT -7)   
Sorry you are in so much pain Princess''

I found this pamplet on Remicade
''Allergic Reactions ''
Some patients who have been taking remicade for Crohns disease have had allergic reaction 3 -12 days after receiving thier remicade tratment . The symptoms of this type of delayed reaction may include fever, rash, headache , and muscle or joint pain . Call your doctor right away if you develop any of these symptoms or any unusual symptoms such as difficulty swallowing.


NERVOUS SYSTEM DISORDERS
There have been rare cases where people taking remicade or other TNF blockers have developed disorders that affected their nervous sngesystem . Signs that you could be having a problem include ..changes in your vision ,,weakness in your arms and /or your legs ,,and numbness or tingling in any part of your body


hope you fill better.
REMIDCADE 10-02-07
colazal 750mg 3x3 a day
mercaptopurine 50mg 1 a day
allopurinol 100 mg
rowasa enema pm
multi vitamin
folic acid
fish oil
 
dx 2004 uc
 
 


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 12/27/2007 5:57 PM (GMT -7)   
princess,

trust your instincts...only we can feel the pain in our body and compare it top other things we have felt. I made the decision to go off remicade even though a majority of my doctors did not believe the pain i was having was due to the remicade. A month later...no more joint/\muscle pains....

goodluck@
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Lexapro (10mg)
-Prednisone (40mg when flaring)
-Multivitamin, Aloe Vera Gel


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/27/2007 11:42 PM (GMT -7)   
Thanks for the responses.  I do feel that since my Remicade doseage was increased I have had the worst body pain in my life.  I have had leg cramps and horrible pains from my rectal ulcer, but they can't even come close to this pain I have experienced.  It just seems too intense to be the starting of Arthritis at 27 but I may just be fooling myself.  I am sorry pottygirl, that is what I went through last night, I couldnt even get off the tiolet without my husband lifting me.  And he was massaging my joints and when he touched my thumb, tears came out, I wasnt crying, it was the pain... I am sorry you go through that.  One thing I have noticed is the pain gets worse through the day and spreads to more places and I feel stiffer at night.  Also on the first day of my infusion when I had the lovely stabbing charley horse sensations, my hands went numb.  My GI said it was probably cause I was hyperventilating.  UGH sometimes I want to strangle that guy.  When I called him about the severe pains he said happy new year when i was hanging up and i said yeah right and cried.  Sometimes they can be so insensitive.  I told him I thought the Remicade may have caused that joint pain and he said well give it one more shot.  I was like at the high dose still?  I am scared.  He said Yeah the full dose, we'll see what happens.  Yeah, he didnt have to spend Christmas drugged up and unable to move or play with his kids in extreme pain and suffer even worse the next day.  Sometimes I wish people could spend ONE DAY in my life.  I wouldn't wish any more suffering than that one day, but still.  They have no idea! 

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 ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/28/2007 9:48 AM (GMT -7)   
Oh Princess, I'm sorry you are having such a rough time. I cannot imagine being in the kind of pain you are in. I know my nephew is taking Humira for the Arthritis and my cousin has RAthritis and she is taking Enbrel. It's amazing that some doctors can be so insensitive and I'm sorry that yours is. Can you possibly start looking for another doctor? I know when I changed doctors, he made an amazing difference in my life, and really is working with me to make sure I stay in remission. Take care Princess. Gentle hugs to you....and to your husband for being such a wonderful person.

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
 
 


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 12/29/2007 9:36 AM (GMT -7)   
i would recommend getting a second opinion if you can and also lowering your dose of remicade. im sure things will get better for you in time. i had killer arthritis all throughout my body last year and could barely move, how i got to work and continued with life still baffles me but i guess we just continue on and do what we have to do. stay positive if you can and keep asking questions and trying things. also rest as much as you can to help your body heal. try deep breathing exercises too and consider lowering your dose if you think you might be having a reaction to the remi.

 
 
__________________________________________________________________________________
- 29 y/o single IT professional male residing in Northern VA, USA
- UC Diagnosis - April, 2006 - Symptoms were sudden and drastic
- GI did not determine type of UC as I was too inflamed during the c-scope
- Completed 3rd Prednisone taper on 4/13/07 - Tapered from early January through mid-April after being hospitalized from a bad flare with anemia & severe joint pain.
- Currently in remission and enjoying life again since getting out of the hospital in early Jan 07' from a nasty flare
- Survive on 4 Colazal/day, 1 GNC Multivitamin, occassional Fish oil & Primal Defense Probiotics
- Enjoy the outdoors, relaxing and spending time with family and friends


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 12/29/2007 9:40 AM (GMT -7)   
also if you can maybe get your vitamin levels checked out, maybe you are deficient in something caused by the higher dose of remi? just a thought

 
 
__________________________________________________________________________________
- 29 y/o single IT professional male residing in Northern VA, USA
- UC Diagnosis - April, 2006 - Symptoms were sudden and drastic
- GI did not determine type of UC as I was too inflamed during the c-scope
- Completed 3rd Prednisone taper on 4/13/07 - Tapered from early January through mid-April after being hospitalized from a bad flare with anemia & severe joint pain.
- Currently in remission and enjoying life again since getting out of the hospital in early Jan 07' from a nasty flare
- Survive on 4 Colazal/day, 1 GNC Multivitamin, occassional Fish oil & Primal Defense Probiotics
- Enjoy the outdoors, relaxing and spending time with family and friends


BenY
Regular Member


Date Joined Aug 2007
Total Posts : 60
   Posted 12/29/2007 9:16 PM (GMT -7)   

I'm sure this isn't going to be particularlly helpful, but once in the fall I got a strong salty taste in my mouth for a few days and, figuring I was retaining too much sodium due to Prednisone, went on a mission to eat as little sodium as I could until the taste went away. Well, I must have overdone it, because one night I woke up with extremely painful leg cramps - the muscle in the front of my lower leg had seized up and I couldn't undo it. Anyone, I concluded it was an electrolyte imbalance. This happened another time after a week of severe diarrhea, I think for the same reason.


Ben, 38
 
Symptoms started 10/06, diagnosed 4/07.
Currently on 8.75mg Prednisone (w/calcium), trying Sulphasalazine.
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/29/2007 9:32 PM (GMT -7)   
Hi Ben,
I have had leg cramps that went away after drinking lots of gatorade, eating bananas/ drinking club soda. I remember that night when I woke up in so much pain I dragged myself to the kitchen and chugged gatorade and ate a banana and took a painkiller and no help. These were definitely more intense. I am on my 4th day of Prednisone, today was the first day I haven't had any body pain since the 24th. My colon feels like a wreck though! But at least I am used to that feeling and I'd take it over feeling like death! Thanks for your experience.
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,ulcer shrunk in 3 months August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis? & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Back to Prednisone again :( for joint pain


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/30/2007 6:12 PM (GMT -7)   
Hey Princess, I was thinking about you and hoping you're feeling better, so I wanted to check in. Has the pain subsided at all? I definitely think you should get a second opinion. Are you someplace where there is a good medical center specializing in IBD? If so, maybe try there, as my experience (from living near both Duke and UNC) is that the big hospitals have more experience with tricky cases like yours, so they have may seen this sort of symptom before like your pain, and may have a better idea than your current GI as to how to handle it. Also, I hope I didn't sound insensitive when I said it might be arthiritis in one of my earlier posts. I just didn't want you to give up on remi if it was helping. but I definitely agree with whoever wrote on here that you know your body best and should listen to it, so if you think it is the remi, go for a second opinion. you shouldn't have to suffer like this. feel better soon and keep us posted.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


MoonShadow
Regular Member


Date Joined Dec 2007
Total Posts : 52
   Posted 12/30/2007 7:58 PM (GMT -7)   
I remember being given a dosage increase on a certain UC medication (can’t remember which one – I was on so many at the time) and I have never felt such pain in my life.

The pain was in my head and it was so bad I felt like slamming my head against the wall, to reduce the pain and pressure. I was at work at the time and had to turn my computer off, turn the lights in my office off and lie on the floor crying in pain.

After doing research into side-effects and mixed drug reaction, I told my doctor I was never taking that tablet again. He of course totally disagreed with me but I didn’t care.

MoonShadow.

Australia.

Female 37.

Sick since 1998 – finally diagnosed 2003.

No drugs (last drugs were taken in 2005).

Healing myself thorough diet & natural methods.

Using plant derived MultiGest Enzymes capsules as part of diet.

 

Feeling fantastic!

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