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Crohn's Disease Forum » Your Story » Don't feel my doctor is keeping me well informed


08-11-2015, 08:29 AM   #1
Granmolly
 
Join Date: Aug 2015
Location: Annapolis, Maryland
Don't feel my doctor is keeping me well informed

After over a year on Remicade with no effect and a partial colectomy, I am now on Entivio. Just got my first infusion less than a week ago. I am puzzled that I was not told the side effects or the possible dangers of this drug by my gastroenterologist. If the drug works I have major complaint, but being summarily thrust into this treatment only a week after my last Remicade treatment caused a lot of discomfort and a high fever for a few days afterward. since it had already been decided by my gastroenterologist that Remicade was not working, should I have had that last infusion? Should the new drug have been introduced so quickly? I feel I am getting the run around. I would appreciate a recommendation for a gastroenterologist in the Annapolis area so I get a second opinion and perhaps put my fears to rest.
08-11-2015, 11:41 AM   #2
Mr chicken
Senior Member
 
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Did you ask your Gi for a sheet on the possible side effects etc on the drug ?
I assume you had schedule the new drug infusion as well .. Did they give you a sheet on side effects then or when to call etc???
Both are different drugs similar to taking Tylenol and the taking Advil two different drugs that can at times do the same thing and can be taken close together .

Entivo needs a very long time to become effective ( many months )is your doctor placing you ok bridge therapy until it becomes effective .

Fevers are common with flares /crohns and remicade infusions in general - that is why some places give you Tylenol during the infusion

Second opinions are always a good idea
But since you have questions - call your Gi and ask to speak to the doctor directly - that you are confused
Most docs will call you back when you ask to speak to them directly
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Aka MLP....
08-11-2015, 02:37 PM   #3
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Did your doctor discuss any potential side effects of Entyvio before starting the treatment?

I know from other forum members that many do experience side effects after the infusions and you may find it helpful to read about their experiences here in the Entyvio support group.

I'd second Mr Chicken's view that you also need an appropriate bridge therapy like steroids or enteral nutrition to treat the inflammation while Entyvio gets to therapeutic levels.

If you're not comfortable with the treatment you're receiving then a second opinion is a very good idea.

Good luck! Hope you're feeling better soon
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
08-15-2015, 04:50 PM   #4
sadiekins
 
Join Date: Aug 2015
Location: Memphis, Tennessee
After over a year on Remicade with no effect and a partial colectomy, I am now on Entivio. Just got my first infusion less than a week ago. I am puzzled that I was not told the side effects or the possible dangers of this drug by my gastroenterologist. If the drug works I have major complaint, but being summarily thrust into this treatment only a week after my last Remicade treatment caused a lot of discomfort and a high fever for a few days afterward. since it had already been decided by my gastroenterologist that Remicade was not working, should I have had that last infusion? Should the new drug have been introduced so quickly? I feel I am getting the run around. I would appreciate a recommendation for a gastroenterologist in the Annapolis area so I get a second opinion and perhaps put my fears to rest.
My doctor is the same way. I feel they are pulling at straws. my colon rectal surgeon.(seton), is an arrogant and rude man. I'm in tears everytime I leave his office. Just got off remicade in feb.....almost killed me. Just started Entyvio this month. We shall see. I cannot live with these setons in me!
08-15-2015, 06:07 PM   #5
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

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That sucks, Granmolly! My GI gave me a handout and made sure he answered all my questions. I also got a big run down of the side effects and what to watch for when I went in for my first infusion on Entyvio last week. I would think that they would want a larger washout period from the Remicade than just a week, as I have always had to wait 8-10 weeks when switching from one biologic to another.

I would encourage you to read the Entyvio forum here, and also to visit the Entyvio site and read all about the drug there. Your doctor definitely should have explained more, though I do also feel that we as patients have the responsibility to ask questions and do some research as well.
__________________
Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
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