Next Step-A bit worried. Advice welcome!

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MerJ2009
Regular Member


Date Joined Apr 2009
Total Posts : 22
   Posted 4/29/2009 2:19 PM (GMT -7)   
I just joined this forum today because I feel that I need the support and advice/stories of other "Crohnies". I was diagnosed in December2008 and have been trying to get into remision since. I was on Entocourt 9mg a day. and 2 Pentaza 4X a day. My Dr. had me taper off my Entocourt and am off of it for now...I had a Dr.'s visit today and was told that we are just going to wait and see what happens. Basically once my pain and other symptoms come back there will be some bigger actions being taken. My Dr. refered me to another Crohns specialist(he is a gastro Dr.) and I will be visiting her in about 2 weeks. It is looking like my next step is going to be Biologics. This seems very scary to me. Anyone have any issues/experiences and can offer up some advice?

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 4/29/2009 3:49 PM (GMT -7)   
I would have thought that they would try 6MP drugs before biologics. At least thats what my doctor is having me do.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


fimk
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 4/29/2009 3:58 PM (GMT -7)   
I agree with Wolfie that there are medications you can try before going on biologics. Some people really like biologics and have had very good results, others like me have seen no difference using biologics. Biologics are expensive and if regular meds work why spend the money.
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been very low doses of prednisone. Refuse to take anymore immune suppressants.


MerJ2009
Regular Member


Date Joined Apr 2009
Total Posts : 22
   Posted 4/29/2009 4:22 PM (GMT -7)   
He was talking about both trying new drugs(6MP's I am guessing) or the biologics but it seemed as though he was leaning towards the biologics to really get me better and keep me there. I guess I need to start research so I can go into my next appoinment informed and ready to discuss. Hopefully a second oppinion will help also! Thanks for sharing your journey!
23yr F. Diagnosed Dec. of 2008 after 2.5 years of symptoms.
Trying to get into remission. Currently only on Pentaza 2pills 4X daily.  


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/29/2009 4:38 PM (GMT -7)   
There are two schools of thought right now among gastroenterologists about how to treat Crohns. The "step up" school follows the more traditional path of beginning with the lower level drugs and moving up until you hit a medication that works . . . basically starting with the ASA/mesalamine drugs like Pentasa, then 6mp/Imuran immunosuppressants and then on to the biologics. The "top down" theory says start with the big biologic guns because otherwise you run a risk of the disease doing more damage (like fistulas or strictures that cna lead to surgery) while you piddle around with the less forceful drugs. The problem with that, in my view, is that not everyone has severe fistulizing or stricturing disease . . . and that there is a disturbing number of people who find that the biologics lose effect after a period of time. Remember you are in charge of your illness. If you prefer to begin with 6mp (or even stay with Pentasa for a time) and see if that works for you, you can insist on that. There is always time to move on to Remicaid or Humira later. you say you are 23, so it is not likely that your disease has done a huge amount of damage to this point. If thetre are no signs of fistulizing or stricturing disease, I would say you can afford six months of trial therapy with 6mp  as an example before jumping right onto the Remicaid merry-go-round.

MerJ2009
Regular Member


Date Joined Apr 2009
Total Posts : 22
   Posted 4/29/2009 4:55 PM (GMT -7)   
Thanks so much for the advice! I was just spending some time looking around on other posts and got some great info(and reactions) to the 6-mp. My Dr. is thinking exactly as you just explained Mike.
I am young and though my Dr. has said that my Crohns is in the more sever range I feel good about your advice. I need to relax and do what I feel is best for me and my body. I think I will continue to do my research and really get informed in the next month or so. He has already run my bloodwork for the 6mp drugs and it seems that all should go well if that is the end result. Thanks again!
23yr F. Diagnosed Dec. of 2008 after 2.5 years of symptoms.
Trying to get into remission. Currently only on Pentaza 2pills 4X daily.  Also a daily vitamin.

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