Share Facebook
Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » 3 month of Imuran shouldn't I be seeing something by now?


03-10-2008, 06:02 AM   #1
drew_wymore
Senior Member
 
drew_wymore's Avatar
 
Join Date: Nov 2007
3 month of Imuran shouldn't I be seeing something by now?

I've just officially passed the 3 month mark of being on Imuran and other then a stupid cold like thing going on I haven't noticed a reduction in symptoms. I've also been on Pred for 2 months now, just dosed down from 60mg to 40mg. I'm not having as many days with D now but I am noticing constipation issues. Pain levels are marginally better. I honestly don't see a big difference from before I started the drug therapy other then the known effects of the pred, so I guess the symptoms are better but not what I expected. I thought I'd be in remission by now ugh.

I'm posting because I have an appt with the GI doc on Thursday and I'm trying to come up with talking points to see where we go from here. Do I drop the Imuran and move on to Humira? There was talk of surgery but I'm not sure of the status of that at this point since the pill cam finally passed and didn't get completely stuck (thank goodness). Obviously my doc and I need to make the final decision but I thought that perhaps others who have been able to tolerate Imuran might chime in here and let me know how long before they saw positive effects, I've read most of the diaries and it seems like almost everyone has had bad luck with it.
03-10-2008, 06:30 AM   #2
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Hey Drew... Perhaps it's time to review with the doc the success rates of Imuran... (not all that great to begin with) and the other options open to you.

How are you positioned IF the doc was to suggest Remicade or Humira as the next step? Do you have coverage for meds? Like, if you had to pay for them, ad infinitum, IS either a feasible, long term treatment for you?

Personally, I wouldn't dream of starting Remicade UNLESS I could be sure I could somehow arrange to continue receiving this drug from that point on.
It's a ... man, I would love to freely use some very stong language here to illustrate the frustration 'I' feel that some of the treatments for this disease require a inifinite source of funds... and if those funds dry up, and one cant' afford a treatment or two, there's a chance that those drugs simply stop working..... forever.

Hey, enuff of the negativity. since you're going to be talking with your GI anyway, you may want to consider running LDN as a possibility by him/her.
Not that I'm trying to peddle the stuff... but it seems to be a viable option in the battle... at least so far for me. And it doesn't seem to carry any of the 'major' considerations the other options do. Like, the side effects won't be almost as big a risk as the disease, and the costs won't bankrupt a guy.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
03-10-2008, 06:44 AM   #3
drew_wymore
Senior Member
 
drew_wymore's Avatar
 
Join Date: Nov 2007
$$ wise paying for Humira and Remicade won't be an issue. I am going to bring up the idea of LDN with him since my case has been far from a slam dunk to begin with. Maybe some "alternative" therapy is just the ticket. My parents are dead set against me using Humira because they saw the cancer side effect, trying to explain to them that most of the drugs we have as options for treatment involve some small chance of cancer happening is not getting through to them yet but I have time to work on that. They are peddling the surgery option and I'm very seriously considering it but I'd like to avoid it at all costs if I can get some viable efficacy from a drug instead of getting invasive surgery.
03-10-2008, 06:54 AM   #4
D Bergy
Senior Member
 
Join Date: Apr 2007
I would second the LDN recommendation. It is working exceptionally well for me. I hardly feel like I even belong here anymore. No objectionable side effects either. I kind of like the occasional weird dream.

Last night I was looking into a Kentucky Fried Chicken Franchise in my dreams. I do not even eat there, so I have no idea why I would even think of such a strange thing. I would never even consider owning a restaurant. LDN makes sleep much more interesting.

Dan
03-10-2008, 07:06 AM   #5
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Wellll, not to peddle surgery... but keep in mind that medicinal treatments can only do so much... if you have extensive tissue damage, scarring or some blocking... your best bet might be a combination of resection and medicines.

As for the cancer risk... well, you've been on Imuran/Azathioprine. you've been exposed to some pretty nasty potential cancers due to it already.

and to Dan, enjoy those dreams while they last... that side effect seems to peter out with time. Man, I miss that Caribean one... the ladies at the pool
03-10-2008, 04:23 PM   #6
JUNE
New Member
 
Join Date: Dec 2006
drew, Dont' give in. Hang in there. Give the pred. time to work. You will get better. You were just so sick that its gona take time work. Give it 6 months then make a drastic change if you have to. Use remicade as your last resort.
03-12-2008, 10:55 AM   #7
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
I don't think pred AND imuran have anywhere's the same... gestation phase (for want of a better term).. Pred SHOULD work quickly, if the dose is right. Imuran does take time, esp if one is ramping up to the optimal dosage slowly (A common practice, as the side effects scare the pants off many doctors).
Figure if you've been at the optimum dosage for a couple of months without results, then its' time to talk with your doctor. He/she might be under the impression your situation has or is improved since your last visit... and you do have to consider there is a risk to this drug... only offset if there is some benefit. You need to know that risk, calculate it, and weigh it against the benefits... if you aren't seeing any in the forseeable future, you need to look over those risk calculations again... with your dr of course
03-14-2008, 01:43 AM   #8
BWS1982
Senior Member
 
BWS1982's Avatar
 
Join Date: Jan 2008
Sorry I should have seen this thread before your appointment Drew, not that it would have changed things monumentally or even made a difference, but I feel less effective in helping at this juncture....anyways, I started Imuran on Nov 16 2007, and was on 100 mg to start for about 6 weeks, then the Dr at the time upped it to 125mg, well, then since that is a new dose, it's like I had to start over and wait another while to see if I'd see a difference. The problem is all the while I had several other variables being thrown at the disease. I was going up on prednisone, the flare up was getting worse actually, and I was going on and off streroid enemas. So much got thrown at the disease that I can only tell you that the Imuran is supposedly able to work synergistically with the Remicade, which I started Jan 23 this year....and now I guess the unfortunately thing of it all is I really don't know if the Imuran justifies any of it's risks because I don't know if it's doing it's job. I have too many meds and changes to know, and my current, slow improvement I'm seeing the last few days is probably from the Remicade (as that's a bigger gun than the Imuran is)....bottom line I can bring to the table is that the Imuran is supposed to work along side Remicade if the patient has both, to be better together than either is seperately. I kept being told that for some Imuran can take several months to take effect.

Tomorrow I have a Prometheus blood test to check the Imuran levels, the Dr. wants to know if 125 mg is the proper dosage, perhaps he'll be able to somehow discern whether it's even doing anything for me. We shall see.

Good luck, let us know what happens.
__________________


-diagnosed with Crohn's Disease in Sept. 2006, currently 28 years old

"Chuck Norris can kill two stones with one bird."

"Men with Spartan lives, simple in their creature comforts, if only to allow for the complexity of their passions." -The X-Files, S4
03-14-2008, 03:25 AM   #9
drew_wymore
Senior Member
 
drew_wymore's Avatar
 
Join Date: Nov 2007
Well I had my follow up with my dr. He's taken me off the Imuran and is dosing me down on the Pred. He wants to see what happens when I'm not taking anything. He's not convinced now that its Crohn's which just blows my mind. I have an upper endo this morning to let him re-check my stomach. He is concerned about the fact that the second camera I swallowed stayed in my stomach for longer then it should have, apparently the video/images show it just tumbling around in my stomach. So he's going to see if he can see anything in my stomach that might be causing my issues. I don't hold out much hope that it will.

If it comes back without showing a smoking gun he's sending me over to OHSU (Oregon Health Sciences University) and gave me the name of the Dr he's referring me too so I could do my research on her. It looks like from her bio she's been in the IBD biz for quite awhile so I'm hoping that we can figure it out. I honestly in my heart of hearts believe its Crohn's given that I have all the classic symptoms despite all of the tests minus my WBC being really elevated coming back negative.
03-14-2008, 03:22 PM   #10
Keara07
Senior Member
 
Keara07's Avatar
 
Join Date: Feb 2008
Location: Nova Scotia
Hey Drew - sound sway too familiar although my docs are sure of the CD and I am heading to the cutting board sometime....They are, though, tapering me off the pred to see what happens (I am down to 30mg and already have some issues - bad distenstion and pain returning worse - but I never got rid of it altogethre on the higher dose of pred). They took me off the imuran too and without certianty, my GI thinks the Imuran effected the pred or vice versa and I had a rough 10 days.

Anyhew.......
I hope they figure things out for you very soon - I wonder what they are thinking now of not CD? Have they ever pinpointed a section in the bowel at all (mine is ileum 6 inches but I have another CT next week to check again as I had a fistula grow since.....).

Keep us updated - certainly hoping for the best for you really soon~~
__________________
Keara07
  • dx'd dec'07 CD
  • emerg surg Mar '08 - removal of 10 in
  • no remission achieved - IBS suspected with CD
  • abscess in pelvic floor sept'08 (mis dx'd aug)
  • cont. severe pain, and inflammation seen in mult tests
  • currently on entecort, diuretic, remeron, pain meds as needed and pain patch
  • waiting for latest reports to switch to new meds
    on and off other meds - I can't remember!!!!!!!
Reply

Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » 3 month of Imuran shouldn't I be seeing something by now?
Thread Tools


All times are GMT -5. The time now is 09:02 AM.
Copyright 2006-2017 Crohnsforum.com