what is wrong with doctors!

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trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/28/2008 11:57 AM (GMT -7)   
Hopefully I'm not beating a dead horse with my joint pain issues here.  Sorry if I've had too many posts about it.  But the more I read the more upset I get.  So on every Remicade related web-site I've looked at it says to let your doctor know if you have any of the following.... joint pain, swelling of the hands, sore throat, and difficulty swallowing (among others that I haven't experienced)occuring 3-12 days after an infusion.  So I told my doctor in OCTOBER that I was having joint pain that I never experienced before, and even went as far as to mention Remicade being the culprit.  She didn't seem too concerned, and I went to my next infusion.  Where my joint pain was relieved for about 3-5 days.  I called again to let the nurse know this.  I also tried to emphasize the severity of my joint pain.  So, months later, nothing is done.  And when I talked to the nurse this morning, she said to me.."when we spoke last week you didn't mention that you thought it was because of Remicade" But I had before!  Besides, I'm not the doctor.  If Remicade warnings say to call a doctor if you have any of the following symptoms, and i CALL with one of the following symptoms, the doctor should be on top of it!  In fact, I have all of the symptoms I mentioned above, which to me is a red flag.  I talked to the doctor today, and she's going to talk to someone who deals more with patients taking Remicade.  Which is nice and all, but I feel like you shouldn't prescribe a medicine to patients if you don't feel experienced enough to deal with potential side effects!
~Nikki


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/28/2008 12:50 PM (GMT -7)   
Nikki,
I empathize with you, your right, you should not have to tell the medical professional what you think but IMHO, I would still continue to let them know what I am concerned about.
Take care and hugs to you.
Kitt
 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
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gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 1/28/2008 1:31 PM (GMT -7)   
Communicating with doctors and their staff is practically an art form! In my opinion doctors do not get enough training in doctor/patient communication and their staff gets even less. I work really hard at getting to know the staff personally...I learn their names, I'm always polite, etc. Still, there are some doctors and offices that do a reasonably good job, and others who don't, even if you are dripping with politeness and excellent communication skills. You have a right to be your own best advocate. If you think the joint pain is related to the Remicade, the you need to speak up, or if you get nowhere, switch doctors. Good luck and let us know how it goes
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/28/2008 1:49 PM (GMT -7)   

I know what you mean... I have been going crazy with joint pain and my Rheumy swears it is only Fibromyalgia... I get almost no help from the pain. I guess if they hurt everyday for long periods of time they might understand.

I hope you get some relief soon!

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/28/2008 2:23 PM (GMT -7)   
Thanks for all your replies....
Karen,
Seriously!  I swear to God, if a doctor had to live in my body for 24 hours they would definitely do something to help me!  What the heck?!  I mean, not being able to lift my right arm warrants no help at all?  Like we have no idea what it feels like to be healthy!  It's been a while, but I still remember.  And, there's no way I'd waste my time calling a doctor's office, going to visits, filling prescriptions, taking pills, and crying every day for no reason!  Hopefully at some point your rheumatologist will do something a little more helpful for you!  Good luck!
~Nikki


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/28/2008 2:29 PM (GMT -7)   
These posts make me appreciate my doctors a whole lot more. I went to my doctor-dreading the appointment-so sick I could barely dress myself thinking she would want to run all of thests and basically make me more miserable then refer me to my rhuemy so I could wait six weeks..you guys all know that story.
I got a pleasant surprise, she looked at me asked a few questions and wrote a script for enough pred to last until I could see my rhuemy. She never touched me which would have hurt and did not run stupid tests (we already knew what was wrong) and I felt better six hours after taking the Pred.
I wish everyone had wonderful doctors and no one had to put up with these half competent idiots.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 1/28/2008 2:30 PM (GMT -7)   
thanks Nikki! too bad Doctors can't live a day in our shoes to know how we feel! :)
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/28/2008 2:33 PM (GMT -7)   
sjkly,
Do you take prednisone to help with joint pain? I have a little extra pred laying around and was considering taking a few small doses until I can get some answers.
~Nikki


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 1/28/2008 3:46 PM (GMT -7)   
Nikki,
Unfortunately, it's up to you to be your own best advocate. Push the dr for antibody blood test. I've been off remicade for almost 2 years now because I was having extremely debilitating joint pain. It typically followed a pattern of between 7-10 days after my infusion. I finally took matters into my own hands, saw a rhuemy who said no joint problems to cause my pain. Then told gi that I was stopping remicade, he didn't even know there was a blood test for antibodies. I ended up with a new gi at a top teaching hospital -- the first question they asked was if I had bloodwork up for antibodies! Anyway, your joint pain might very well be remicade related. Hope you find answers soon.

Lamb61
 


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/28/2008 4:41 PM (GMT -7)   
Lamb61,
Thanks for your reply. I was wondering if once your joint pain started after your infusion, if it kept getting worse each day. Mine does, and I'm trying to narrow down what the problem could be exactly. Also, how long did it take you to start feeling better after you stopped Remicade? And did your doctor do anything for your joint pain? You're the first person I've found with symptoms so close to mine!
~Nikki


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/28/2008 6:58 PM (GMT -7)   
Nikki,
Yes, I take Pred to deal with joint pain. I have RA so when I had a bad flare in October they put me on Pred. I personally am very carefull with Pred-I love the stuff its a life saver-but I am concerned both with long term side effects and with side effects of stopping too quickly...
So if I were going to take it other than exactly as prescibed I would tell my doctor what I was doing and get advice.
SJ
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