chest pain and neck swelling

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april07
Regular Member


Date Joined Nov 2007
Total Posts : 30
   Posted 11/3/2007 11:53 AM (GMT -7)   
Every time I have a Remicade infusion the next day my chest and neck hurt to touch.  There is also swelling in these areas.  Has anyone else had this problem?  My abdmomen also cramps a lot and I get very fatigued for may days after.  I am in a small town and have a Rheumatologist taking care of my meds she has no answers for me.... HELP!!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/3/2007 12:02 PM (GMT -7)   
This is one of my pet peeves, a doctor administering this med with no idea what the side effects can be and no idea what to do about them. Sigh, sorry for the rant, but really, this doctor should be doing the research not you.

Anyway, it sounds like side effects and/or antibody build up. You can battle these with pre-meds (and in your case, keep taking them for a few days to a week). Are you getting pre-meds? Tylenol, Benedryl, some sort of steroid? If not, you should be.

I would tell your doctor to look into this, and if he/she is unable or unwilling, to give you a referral to a doctor who cares.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/3/2007 12:47 PM (GMT -7)   
You go Judy! How is it that we, the patient, are more knowledgeable many times on our meds than the docs are. With the internet, it does make it much easier for us to "study" about what is being put into our bodies.

I might also add that your local pharmacist is also a good contact whenever you have any questions about a med. Though they are not a doctor that can tell you what to take, or prescribe any further meds, they can certainly recommend ideas to you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 11/3/2007 1:20 PM (GMT -7)   

I totally agree with Judy and Peggy!!  Sounds like this doctor needs to do more research!!

Good Luck :-)


april07
Regular Member


Date Joined Nov 2007
Total Posts : 30
   Posted 11/3/2007 3:17 PM (GMT -7)   
Thanks for the input. It does seem that the patient always knows more about the disease and meds than the MD does. I do get medicated before hand. I am the only one in the facility that does. And trust me I have heard a dozen times that I don't need to be but all the research that I have done stated that it was a good idea. I think that part of the problem is that I work at the hospital and you know that when you work there doctors think that you are thinking about it to much or making more out of it than what it is. I have had many tell me for years that it was just IBD and that everyone has it so just take a fiber supplement to help . Sounds like it is the same story everywhere. The doctors are leaving it up to the patient more and more. Thanks for the support it is good to finally be able to talk to people who feel as I do and who can shed some light on my problems!!!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/4/2007 9:39 AM (GMT -7)   
April,

You can get a Prometheus Infliximab Antibody HACA test done to see what your antibody levels are. The paperwork that comes back with it gives instructions on how to proceed depending on your antibody levels. I think 4 weeks into the infusion is when you should be tested, you may want to research it some. Sometimes it says to use premeds and continue, other times it says to discontinue the medication. It may be a way for you to get your point across to the doctor, and you won't be the one making the decision.

My insurance paid for the test, but a lot of people here ended up having t pay for it, just so you know.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


april07
Regular Member


Date Joined Nov 2007
Total Posts : 30
   Posted 11/4/2007 9:47 AM (GMT -7)   
Thanks I think that I may have to have that tested. I had that done a few weeks before the infusions started. I did not know about the 4 week test. Thanks!!!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/4/2007 9:52 AM (GMT -7)   
april07 said...
Thanks I think that I may have to have that tested. I had that done a few weeks before the infusions started. I did not know about the 4 week test. Thanks!!!
There are 2 Prometheus Infliximab tests.  One where they measure how much is left in your system after your infusion, the other that measures the antibodies.  I think my doctor did both and it showed none of the medication left in my system, but enormous amounts of antibodies.  At that point we had no choice but to take me off the meds. 
 
I'm not sure what test you had before you started, maybe one that shows if your body will metabolize it correctly? 
 
Make sure you do some research before you order the test, lots of doctors don't know anything about them. 
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 

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