Doctor's appointment - Imuran

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

my3suns
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 6/25/2008 3:32 PM (GMT -6)   
Well, I went to the doctor today and he wants me to start Imuran.  I have to take a Prometheus test before I start.  Why?  What are they looking for?  My doctor said something about a gene. 
 
Also, the side-effects really scare me.  Can someone give me more information on the side effects.  I read something about an increased risk of cancer and lymphoma.  Honestly, I would rather have UC anyday.  My mom has cancer and I have seen what it does - I want nothing to do with it.  Is Imuran really the next med for me?  I am so upset right now and just so sick of UC.  I don't feel horrible, I just can't get rid of this flare.  My flares are unusual - I don't have a hundred BMs a day, I have constipation, pain, mucus, and blood.  I really wish the Entocort had worked. 
 
He also wants me to start taking cipro and flagyl.  I don't want to take those either.  I think I am in denial at this point : ). 
 
Thanks for listening to my nonsense.
my3suns
 
Diagnosed with Ulcerative Proctitis in September of 2006
Canasa
Diagnosed with Pancolitis in April 2008
My current meds are Rowasa Lialda and Entocort
Current state - Flaring


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/25/2008 4:19 PM (GMT -6)   
How your body handles Imuran is controlled by your genetic makeup. Some people can take small doses and get an effective blood level, others need larger doses, some don't metabolize the drug well enough for it to be effective.

Imuran does have some scary side effects, yes, but they're not common. Uncontrolled colon inflammation also carries an increased risk of cancer. So, as lousy as it is, in some ways we just can't win.

You don't have to take any medication you don't want to take. That is your choice and your decision, so don't feel pushed into a corner. Only you can decide whether constant illness is preferable to possible, but not common, side effects.

In a way, it's good the Entocort didn't work. It's a steroid and long-term use can have all the problems steroids produce. I've had shoulder surgery twice and lost a good bit of function in one shoulder due to long-term Entocort use.

No nonsense, it's just hard every time we have to step up the ladder to the next level of treatment. It's almost like going through the diagnosis all over again. Rant, cry, complain as much as you want.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 6/25/2008 7:37 PM (GMT -6)   
I took imuran for 3 years before my liver levels went up and I had to stop. The only side effects I had were the tireds and nausea, but both of these stopped as soon as I started taking it at night. I also had some hair loss that resolved it self in a couople of weeks.

We are on such a low dose compared to transplant patients, who the drug was initially used for. So alot of those stats come from the high doses for that.

Imuran is one of the best drugs to keep you in remission but alot of times needs help getting you there with either pred. or some other drug.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 6/25/2008 9:39 PM (GMT -6)   

I know how you feel -- when my husband needed to start imuran due to being sick for over a year and other meds not helping I was very nervous after reading everything about it.

He was started on the imuran along with 40 mg of prednisone to help jump start it.  That was mid May last year during a hospital admission after a terrible flare.  He had a very slow taper off the prednisone as 3-4 attempts off the prednisone previously did not go well.

6 weeks after starting the imuran he went from being a recluse with uncontrollable urgency and frequency to a situation of being able to go out a few hours here and there without being panic stricken.

His Dr had the promethius testing done 3 months after being on the imuran not prior to.  Her feeling was she wanted to see how he was metabolising it etc.  He was put on 75 mg to start which was a low dose as she was being very conservative to start. (It is a very expensive test...approx $850 which our insurance ended up covering after some dialogue back and forth.)

5 months later a 5 day appt with the Mayo clinic due to a referral that was in process by his regular local GI and the Dr there doubled his dose to 150 mg which he not only tolerates but put him in a semi-remission.  He has to have a blood draw every month for 3 levels to be checked and the Dr authorizes another month of meds.  This will be done for one year.  When he goes back in Nov. we will see what the new arrangement will be.

His monthly levels have been great - the Dr. is somewhat pleased with his progress.  My husband is basically pleased.  He has his life back esentially.  It is not perfect by any means but he has control where before the frequency and urgency was such that he needed to know every moment where a bathroom was and how close it was.  Depending, if we are eating out sometimes he has to use the rest room like it or not. He hardly ever used a rest room outside but he has gotten over that now.

The Mayo clinic Dr knew how concerned I was by all the imuran related questions I was asking him.  He indicated to me that  imuran if monitored properly is a safe drug and very helpful to attain a remission and for me not to be so nervous about it. 

I can  verify and say without it for a year and 1/2 from the onset and trying various things this was what made the difference for him.  He suffered for most of that year 1/2.  It has been a little more than a year now since that hospital admission and life is so much better in comparison.

As you read this forum and what works for one may not work for another.  You certainly have to be comfortable with your doctor and the choices.  It is such a trial and error thing.  My husband was at rock bottom and was not in a position to refuse as he was looking for something -- anything to reverse what he was going through.

Good luck with your decision and hope it helps you quickly.


61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema every other PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


colitis-owns
Regular Member


Date Joined Jun 2008
Total Posts : 41
   Posted 6/26/2008 1:43 AM (GMT -6)   
There is an increased risk of some cancers. i dont know alot about lymphoma but i do know that Azathioprine, 6mp and Mycophenolate do increase the risk of skin cancers.

Transplant patients are usually on a higher dose than us and also take other drugs such as cyclosporine and or prednisolone long term too.

Azathioprine and other 6mp's have been shown in a study at the dermatology centre where i work to increase both UVA and UVB effects on the skin greatly.

The skin cancers arent malignant melanoma, which is the deadly form of skin cancer. They are called BCC and SCC both are very easily treated most of the time.

I myself am heavily involved with transplant patient's that use these drugs and i still take Azathioprine and will continue too.

My advice would be to invest in a sun block, wear a hat and dont sun bathe etc.

Not everyone will get problems whilst on these drugs, same as everyone who has colitis wont need surgery. It all depends on person to person.
Pan-indeterminate colitis
 
Pentasa 2g bd
Pentasa suppository 1 nightly
Azathioprine 150mg

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, May 22, 2018 3:30 PM (GMT -6)
There are a total of 2,965,071 posts in 325,206 threads.
View Active Threads


Who's Online
This forum has 162931 registered members. Please welcome our newest member, Mary Margaret.
447 Guest(s), 8 Registered Member(s) are currently online.  Details
netsavy006, everseeking, Lunacat13, NiceCupOfTea, DogLover2013, RobLee, garyi, goldengoose