need advice on medication

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goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 3/3/2009 2:23 PM (GMT -7)   
Hi All...I need some advice as to what to do...to sum up my history: UC 1991, Jpouch 1992-chronic pouchitis since 1996 but managable and lived a good quality of life on and off cipro for the pouchitis...In the last 3 years I have been diagnosed with gerd and had my gallbladder removed....in the past year the cipro has become less effective and they found a stricture above the pouch which led to the Crohn's diagnosis....allergic to sulfa, pentasa...flagyl is difficult to tolerate but I take it for short periods...quality of life has become quite poor over the past 6 weeks..while I continue to maintain my 2 jobs (I'm a medical social worker), it is becoming more difficult....started entocort in november, helpful but not doing it all...my GI discussed the heavy hitter meds (imuran, methotrexate, 6mp, remicade, humira, etc)...although I didn't want start these meds, I knew I needed to as I wasn't getting better on the cipro and entocort...so I tried imuran for 2 weeks and landed in the ER due to side effects...so I agreed to start humira...I haven't started yet as I need to get preapproval from my insurance...now while I wait, I added xifaxan to my cocktail of cipro and entocort....and while xifaxin never did much for me with pouchitis, somehow I appear to be holding my own with the addition of the xifaxin...pouchitis is not my problem right now, it's the inflammation/stricture above the pouch...so as I near approval for the humira I'm wondering if I should hold off and stay on my current meds of entocort, cipro and xifaxin...I know my doc wants to wean me off the entocort as he doesn't want me on it longer then 6 months...if I start to wean I will most likely get sick, but who knows?...I would like to try and hold off...everyone else says that I am just prolonging the inevitable and I know I am but I'm really frightened to start humira/remicade....I don't tolerate meds well and unfortunately I know too much about the side effects and what could occur...so I don't know...I know I need to bite the bullet and move forward...just scared...

catbird4077
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 3/3/2009 2:38 PM (GMT -7)   
Please tell me what the side effects were for you when you took the Imuran. My son, 26, diagnosed with CD 6 months ago, was taking Lialda and Imuran. He landed in the hospital with side effects within 2 weeks also. The Dr's are not sure which drug caused the side effects. He is on Flagil and vitamins for the next month. They are talking about trying the Imuran again. They want to talk about possibly taking the Humira or remicade drugs if he reacts to the Imuran again.

I feel like he is in the same boat as you are.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/3/2009 2:49 PM (GMT -7)   
I'm glad the Xifaxan is helping you. I have been on it for almost 2 years and it literally has made a world of difference in my life. As far as when/if to start humira/remicade I just have a few things to say. Do you trust your doctor's opinion? Do you feel like you need a second opinion? Or that a second opinion would change the course of treatment? And Do you think if you held off starting humira/remicade for a month or two to see how the Xifaxan does it would do significant harm to your disease?

Personally I tend to trust my doctor, but that is just my nature. When I felt that my doctors advice wasn't in my best interest, I changed doctors to someone who was more in line with my personal thinking.

This is a big decision you have to make and it shouldn't be taken lightly. You have had a rough road, I hope it gets better soon.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 3/3/2009 4:11 PM (GMT -7)   
Catbird- The imuran caused me to have severe upper abdominal and back pain to the point that I had to go to the ER thinking that it might be my pancreas...I had an MRI and all my organs were fine...I stopped the med and that pain went away...I should also add that my liver functions went quite high in just the two weeks I was on that med...I'm sorry to hear about your son...I was 22 when I was diagnosed with UC and lost my entire colon by age 24...thought I was cured with the removal of the colon and the jpouch creation...live and learn!
 
Suzanne- I do trust my GI and we have a great relationship...I am however in the process of getting a second opinion as this can only help...if there is one thing I have learned in the past 2 months is that I'm not staying well on the meds for longer then 1 to 2 weeks...I guess I'm wondering if it's better to start remicade/humira when you are somewhat stable or during a roaring flare?...I've been on antibiotics for over a decade and it would be nice to try to get off of them...in addition, the xifaxin is working in conjunction with the entocort, something I have to get off of...I definitely don't want to do prednisone and I think it may be easier to start humira/remicade when I don't already feel like I'm dying...the illness sucks, and to add the side effects from the meds is unbearable at times...last week I had to take macrobid for a UTI and I was in a constant state of nausea the whole time...
 
 

Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 3/3/2009 4:18 PM (GMT -7)   
Here's what I've found with Imuran... if a person has adverse effects with it, then they will probably be fine with 6MP and vice versa... I take 6MP and have been fine with it; a while back, for financial reasons, I switched to Imuran and had really bad side effects, so I switched back and was fine. I know of at least 2 other people who have been able to take one but not the other, so this might be something you could mention to your doctor.
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, tapering dose of 40mg Prednisone, Bentil and Percoset... considering Remicade


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 3/3/2009 4:25 PM (GMT -7)   
Hi Kriss...I asked my doctor about that and he said the opposite...he said that if I didn't tolerate the imuran, I won't tolerate 6mp but I have read on this forum otherwise...I will discuss it again with him...the only problem with imura and 6mp is that it takes sooooo long for it to work...nothing is simple with this disease is it?

Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 3/3/2009 7:57 PM (GMT -7)   
I think its individual - i couldnt toleralte 6mp at all but was ok on imuran for a few yrs. so could be worth a go - at the end of the day they are not the same med otherwise they would b the same! :) I empathise with ur med issues - i've gone through them myself, side effects and the like- its hard to know sometimes. I'm on entocort @ the mo as well & feeling the same as you! As for the taking long to work yup - i had to take imuran for a yr!! but the entocort is prob a good option to tide you over while building up on the imuran type meds. Also ur dr may not be increasing the dose enough if its not working - i learnt that one the hard way!! keep them upping it faster, i'm no dr but i think it would make a difference! I used to be worried about the side effects as well but i just had to make my peace with it - otherwise i would have really bothered myself. personally i learned to accept some side effects when i was getting them and this really helps. before i was like they have to go, now! & it seemed to make them worse. My side effects have become much more tolerable as a result. I totally get where your coming from tho & I really hope things begin to settle down.
 
 


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 3/4/2009 2:35 PM (GMT -7)   

I should have read this post before posting my own question about Remicaide. 

My daughter will probably start Remicaide next week.  How do you take it?  She hasn't gotten over the "needle" fear yet.  But I can give it to her if I have to.  Is it injected?  What are folks talking about when they take about infusions?  How often do you have to have injections, if that's the way it's given.

Because of this forum, I feel I can ask her doctors the right questions.  thank to all of you.

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