thinking twice

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rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 10/12/2009 4:58 PM (GMT -7)   
Really would like some feedback please. My last remicaid infusion went fine. However,I was very glad my fiend,a long time, paramedic spent the night with me. about 8 hours after the treatment things went south. Symptoms began with fever,chills, severe headache, rapid pulse,joint pain, and uncontroable shaking. Carmen,my friend had blankets piled on top of me. you get the idea.Pretty bad allergic reaction. It was a very miserable 24-36 hours. No, I have not told my doc. She is on vacation,out of the country. I am schedualed to have another this Friday. I really do not think I want to risk that again. Fistula/abscess is the main reason I agreed to to to the big guns.Only a few months into this thing, but I am having second thoughts.Any words of wisdom will be great!!

Mary Lynn


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 10/12/2009 5:02 PM (GMT -7)   
Benadryl should kill an allergic reaction.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/12/2009 5:06 PM (GMT -7)   
I do not know, I think waiting until you can contact your doc might be a good idea. You know what is best for your body and it might be better to do the humira shots.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/12/2009 7:38 PM (GMT -7)   
Hi. Were you given any pre-meds before the remicade? Like Benedryl and some steroids? My husband has a similar reaction. He gets a fever, and severe joint pain. And it starts getting better in about 14 hours, and continues to get better over the next couple of days, and then he's back to normal.

His doctor gave him 40 mgs of solumedrol along with Benedryl to combat the reaction. Now, he still runs a fever, but the joint pain is better - it's still there, but it's bearable. So, he takes tylenol for a couple of days after the infusion, and he's ok.

We're going to be talking to our doctor about taking some steroids for 2 days before the infusion to dampen down the reaction some more. We aren't sure if this is an allergy or serum sickness, but whatever it is, we want to try and make it less noticeable.

My husband only started having this reaction after coming down to 10 mgs of prednisone. Before that, he had no infusion reactions altogether. So, we think it'll get better if he can just take 20-25 mgs of prednisone for 2 days before the infusion.

Do talk to your doctor prior to your next infusion, and see what kind of premedications they can give you.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/12/2009 7:43 PM (GMT -7)   
Marylynn, for future reference, a fever is not something you should ignore while on these meds. I've always been told that a temperature of 38C requires an IMMEDIATE trip to the emergency dept - do not pass go, do not collect $200... well, you get the picture. I've even been admitted on the basis of a temp of 37.8.

I can see that the crisis has passed for the time being, but what if you phone the infusion centre and ask their advice, seeing as your doc is away?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 10/13/2009 6:04 AM (GMT -7)   
Thanks for the reply's. I did take benedryl before,during and after. To be honest not much scares me. Yes, my friend the paramedic tried to get me to go to the ER. I agree ivy6, I should not have played around. Yep, NAVY, I do know my body.I am just not able to vent much.Found an old family doctor. Trained at Mayo. Very up to date, to my suprise about this CD deal. I rarely post because it is in what they call the severe stage, and I have no answer for anyone. I am tired of this mess. On the bright side.... my old doc believes in pain management. After looking at my butt,he actually gave me a hug. Also insisted on b-12 injections. I will do as you suggested. I will cancel the appt. on Friday. Anthing else you sugg. is appreciated. Oh yeah THANKS SO MUCH,I REALLY NEEDED them!!

Mary Lynn


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 10/13/2009 6:30 AM (GMT -7)   
Rovin, I get a shot of premed before remicade and then I get two bags of saline , one with the med and the other just saline running at the same time. It dilutes the remicade and I no longer have trouble. Tell your doc before the next infusion...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 10/13/2009 9:43 AM (GMT -7)   
Sweetie you have to tell the doc before the infusion, I had allergic reactions after my 2nd infusion, my 3rd is in two weeks and they are having me take Prednisone the day before, the day of, and 5 days after this infusion in hopes that we'll get past the reaction. But this is only because the Remicade is working for my CD. If the Remicade isnt working you may have built up antibodies, which they can figure out with blood test, hope this helps, take care!
dx w/CD finally in July 2009, currently taking pentasa, entocort, cipro, flagyl, probiotics, celexa, bentyl, biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 10/13/2009 6:35 PM (GMT -7)   
Thanks for the replies. Had a death in the family this a.m. No infusion this week to worry about. My best to all.

Mary Lynn


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/13/2009 6:51 PM (GMT -7)   
I am so sorry ((((((((((((((((((Mary Lynn)))))))))))))))))))). My thoughts are with you and yours.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 10/14/2009 9:29 AM (GMT -7)   
I'm sorry for your loss hun, my thoughts and prayers for your family.
dx w/CD finally in July 2009, currently taking pentasa, entocort, cipro, flagyl, probiotics, celexa, bentyl, biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 10/14/2009 11:29 AM (GMT -7)   
Sorry to hear of your loss.

When I was on Remi, my GI insisted it be delivered at a slower rate than recommened to err on the side of caution. Also, like Sniper I had 2 saline bags, on with meds and the other with benedryl.
 

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