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Going to Dr., Want to Ask Right Questions

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Ulcerative Colitis
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Posted 1/17/2011 1:47 PM (GMT 0)
Good Monday Morning to all!!!

I am going to my wonderful GI dr. this afternoon, and I want to ask the right questions. Since coming on to this site in Nov., I have learned a plethora of information, and am most grateful.

I have had UP for 20 years, but until the last 18 mos. it has been easily contained by medicine. (Pred., Imuran, suppositories and enemas, a few others here and now) In August of 2010 we discussed Remicade. I was initially opposed, mostly fear and ignorance. Anyway, I started it on Nov. 11th and have had the 3 loading doses. I am somewhat better, but nowhere near well. I still have the urgency, blood, mucous, gas, and these terrible spasms, or actions that force stool, and urine out. (SO sorry for the info, but as I have learned here, we all can sympathize!)

I have learned here it can take up to 7 treatments to see improvement on Remicade. There are some stressful situations in my life, but I don't feel like anymore than others deal with. I want to just feel normal again, and not be a prisoner to my home because of the proximity to the bathroom!!

For the past two weekends, I have run fever of 100 to 101 degrees. At first, I thought it was the flu, but then, I felt fine the next day with no other symptons. Is this something to do with the Remicade? I also think I am beginning menopause (51/F) and the hot flashes literally started the day I started Remicade. Thought it was a side effect of that, but now not so sure...

Thanks for taking the time to read and post something helpful for this happy blonde!! I live in the South and have a wonderful life, but just can't enjoy it now.

Daffodil

Posted 1/17/2011 2:07 PM (GMT 0)
Some questions to ask:

What is the probability that Remicade will work?

How long do I need to be on Remicade for?

How many patients do you have who are on Remicade?

What side effects have your patients told you they had when taking Remicade?

What is the next step if the Remicade doesn't work or stops working?

What is the likelihood that I will eventually need surgery?

For the past two weekends, I have run fever of 100 to 101 degrees. I have no flu symptoms. Is this something to do with the Remicade?

I started getting hot flashes the day I started Remicade. Have any of your patients experienced hot flashes while taking Remicade?

You might want to read what others are saying on ask a patient:

http://www.askapatient.com/viewrating.asp?drug=103772&name=REMICADE&sort=satisfaction&order=0
Posted 1/17/2011 2:49 PM (GMT 0)
Thanks SO SO very much...
Posted 1/17/2011 5:16 PM (GMT 0)
I would look up before you go but ask also :"What are the symptoms of Remicade intolerance?
Could it have built up since you first started in Nov.?

I'm puzzled because you say your symptoms have been controlled by other drugs. So why did you start Remicade? If it's making you worse you should return to what was working.

Re hot flashes: I get them as a 50-something woman but not due to any meds. The curious thing for me is that when I am flaring badly they are absent. When I am doing well they pop-up more. This has nothing to do with your situation just wanted to comment.
Posted 1/17/2011 9:41 PM (GMT 0)
You can ask all the questions you want but it doesn't mean you'll get a straight answer.

Try to do as much research as you can on your own. I know more about some meds than some of my doctors do. You can also ask Pharmacists and family members /friends who are in the health care profession. Try and search for an non-bias response and ask all types of people. It doesn't hurt to ask some alternative/holistic docs their opinions too. It's goos to get it from all angles.

At one of my support meeting one person was told that Remicade only works 50% of the time after 5 years. A medical scientist in our support group told us the info from the doc wasn't quite correct as the true % is only 20%. Sometimes docs tell white lies as they know stress can make our condition worst. Not sure what is worst..the white lies or the truth sometimes!
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