Update/Dr. wants me to choose next route of meds, help!

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Regular Member

Date Joined Aug 2005
Total Posts : 42
   Posted 9/6/2008 5:28 PM (GMT -6)   
Went to see GI. My homework is to look up Crohns meds and tell him what I would like to do next. I would like to start with the most used medecines as they have been out there and studied longer for example Methotrexate was one he wants me to look up. I have tried Asacol Pentasa 6MP Remicade Humira. The only thing that ever helps is the Prednisone. He also gave me a new pain med, I almost fell over in shock, but unfortunatly it doesn't touch me :( I suggested Entocort because that is in the steroid class and those seem to help me but he wasn't too enthused and said probably not for me. He is strongly pushing for Tysabry, but that one is the newest and has dangerous side effects I would rather not risk. I guess I will suggest the Methotrexate as that seems the least dangerous choice I have. Cymzia is also on my list to look up but because I failed with Remicade and Humira and this is the same class he isn't hopeful for it. Any thoughts or suggestions would be appreciated, thanks everyone, Dawn☼

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 9/6/2008 7:34 PM (GMT -6)   
Hi Dawn if you think that is what you want to take then that might be worth going after. Hope you are feeling somewhat better now. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 9/6/2008 7:39 PM (GMT -6)   
I'm quite shocked that the doctor is making you responsible for this decision. Your doctor is the one with the training and experience - why doesn't s/he make the decision for you, or at least narrow the choice down to two or three meds?
Co-Moderator Crohn's Forum.

Regular Member

Date Joined Aug 2007
Total Posts : 255
   Posted 9/6/2008 7:47 PM (GMT -6)   
Sorry, I don't have a med to suggest. But, I wonder why your doc is so set on your taking Tysabry? I know drug reps push their meds on docs. Could it be possible that your doc thinks its the best choice for you? If so, he/she should be able to give you reasons, pros and cons of the meds. Have you thought of getting a second opinion or at least a med consultation from a differnt doc who can give you good info about your choices?

Good luck!
Tressa 35 (F) in WNY
unknown dx (UC or Crohn's), skip lesions & stomach ulcers
Canasa nightly, Asacol 12/day, prilosec twice/day for ulcers in antrum

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 9/6/2008 7:53 PM (GMT -6)   
I take MTX and after two weeks of awful side effects I love it. After that two weeks I had no side effects, after 6 weeks I started tapering prednisone. After 8 weeks I was off the prednisone and have stayed off of it other than 1 week when I was too ill to take my other meds.
If you decide to take MTX start taking lots of folic acid before your first dose then every day. Drink a ton of water in the 24 hours before and the 24 hours after your dose.
I dont know about the other drugs you mentioned.

Regular Member

Date Joined Sep 2006
Total Posts : 146
   Posted 9/6/2008 8:32 PM (GMT -6)   
Where is your crohns located? This often makes a difference of which treatment works.  What type of effects did the 6mp have on your body or did it fail?  I think that it may be time for you to get a second opinion in your treatment.  Your GI MD should not put that pressure on you.  MTX has many SE that you should definately investigate before deciding to go on this med.  There are clinical trials going on currently now with Prochymal that have shown good results also.  I would not go on Cimzia either.  I am hesitate of Tysabri as well, unless this is your last option, due to the SE profile. 

35 yo--Crohns since 2000, Granuloma cysts in mouth-oral surgery X2 in 2000, Fistula colon 2006, Rectovaginal Fistula 2008, 2 Ulcers Rectum, Joint pain. Kidney Stones. Dx with Migraines in 2002 and Ovarian Cysts with Endometrosis 2001.  Dx with Fibromyalgia in 2007 and IC in 2008.  Now receiving Cimzia, Topamax 300mg daily, Cymbalta 60mg daily, Prevacid 30mg, Maxalt, Vicodin as needed, Fish Oil, and Multivits   

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 9/6/2008 8:45 PM (GMT -6)   
ivy6 said...
I'm quite shocked that the doctor is making you responsible for this decision. Your doctor is the one with the training and experience - why doesn't s/he make the decision for you, or at least narrow the choice down to two or three meds?

Same here....  I would not like my GI putting this on my shoulders.  We both talk about the drugs, he tells me what he likes/doesn't like about them, and he lets me know what he feels would work best for me.  If I agree to try then we go that route.  If I have concerns, I express them and we talk about them.  Something doesn't sound right with your doctor having you look up the meds and decide yourself.
As far as Methotrexate goes, I am currently on it.  I didn't like it at first as I was having horrible side effects.  But they have gotten much better and I'm doing good on it.  Today was my last day of prednisone and next week will be my last week on Cipro and we shall see how it does for me being on nothing else.  I'm going this route though because I have failed on just about all the other meds and I'm too scared to try Humira and the others in that group as I was a remicade failure.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 5mg every other day- I am almost off!!  YAAHH!!! :-)
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
No Surgeries

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 9/7/2008 10:06 AM (GMT -6)   
I think injected MTX is the only thing that has helped my crohns. Personally, I want to be in control of my own health, so if he is orintated to that mindset I can see where he is coming from.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Veteran Member

Date Joined Mar 2006
Total Posts : 2672
   Posted 9/7/2008 3:31 PM (GMT -6)   
While I like to be a part of making treatment choices, I certainly wouldn't want it all put on me like this. Especially with having to research them and decide. That's the part I want my doc to do, and to at least know what direction we should be heading in. That would make me quite nervous!
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Just finished tapering off Prednisone *YEAH*, Asacol, Questran, Toprol XL (for high blood pressure).

Regular Member

Date Joined Aug 2005
Total Posts : 42
   Posted 9/8/2008 11:24 AM (GMT -6)   
Hi guys, thank you everyone who responded. I am hopeful as some of you here are helped by the Methotrexate and just because my head hurts from all of these drugs and all the info I'm going to take the easy way out and go for the Methotrexate because of what I've heard here and because it has been used for a long time and seems pretty stable. My Crohns is mostly in the stomach I think but have been told it is throughout my entire tract. I also will bring up the Entocort as I've said before the steroid therapies seem to work for me. I'll have to try and convince the GI that I really would like to at least try it before the heavier drug therapies. The next biggie is the stupid pain. I have seen here on the chats that some have pain management clinics or Docs that they see, but I am unable to find one that deals with the Crohns pain and I'm about to lose it. I am waiting for a call back from my primary Dr as I have requested she find someone for me to get through this flare and so that I don't have to worry that I won't get any relief. It seems so stupid unfair that if I don't have back or nerve pain no one wants to treat me. I'm in the Albany NY area if someone knows a Dr that includes pain management in their care or knows of a pain clinic that will take me. I even willing to drive a distance if I have to, so if you are being treated by a place, please let me know where it is so I can try and contact them. When I told my Rhematologist that the oxycontin did nothing for me he gave me that look that said "you're crazy" and although I gave him the bottle of pills he did not give me anything else to try, now I have nothing again. I'm going to review some chats and write down what some of you are taking for pain and try tomorrow to get my GI to give me something else to try, well see how it goes. If I can't get any results I'm just going to admit myself and get treated for pain that way. A more expensive and wicked hassle as I have children and a husband that would have to take off time from work at a job he just started today. but I refuse to suffer. its just inhumane, and I'm a person who deserves to not be in pain. Time to take my steroids I'll keep everyone posted and as usual this place is my biggest source of support and am so thankful to have you all, Dawn☼
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