Azathioprine/6mp/Imuran

Looks like at my 10 year mark of dealing with this complicated disease, I'm looking at moving into this class of drugs.
I have never gotten a full year of remission. Usually I look at 2-3 flares a year which last around 3 months until I can get symptom free or as close to it as possible.
I have two young children, 6 and 9. I'm approaching my 40th birthday. I have always been "on the go", our family is extremely busy and if I didn't have this disease I'd probably be holding down a job to help my husband support us. Thank goodness we are "OK" without. I don't know how I would do it sometimes. I did work full time for 2 yrs & part time for 6 yrs of dealing with this and young children at home and ended up quitting.

My question for the users of these drugs. What are your side effects and difficulties of being on these? Did it make a big difference in your symptoms leading to a better quality of life? Long term what are we dealing with?

I honestly have been reading more about surgery and wondering if I should do it now when I'm young and can handle it health wise and financially. I just want to go on a field trip or to a wedding or on vacation without having such drama with my UC. I've been married for 10 years and most ever trip or vacation we've had I've been dealing with a mini OR full on FLARE.
I don't want to rush into anything but I wonder if being disease free in the long run is much healthier? Although I feel like I'm just willing to give up a major organ in my body.

I'm fairly confident I have "pancolitis" although when my first doctor diagnosed the type he didn't technically go all the way up... but he was pretty certain since he went most of the way. I had to have a couple colonscopies back to back when I was dealing with bacterial issues and he just needed a quick assessment of why I wasn't getting better so that was the reason it happened that way.

My initial diagnosis I was pregnant and had to lay there awake while they did a flex sig to determine I had UC.

I just feel like I could have so much more without this disease! I feel like I'm losing faith in med's and I'm scared about long term use of scary immune suppressants.

Don't you sometimes wonder how we even get thru the trials of this disease or what it feels like to just have a normal bowel function? And the things that other people gripe about? PAAAALEASE!!!!!

Thanks for letting me vent.....

Lana

uc4m, sorry to hear you are having a hard time. what meds are you currently on? perhaps you haven't exhausted all of your possibilities before moving up to 6mp. have you tried the specific carbohydrate diet? sometimes that helps some people. it would help to know what drugs you are on and what you have tried already. i got to that point where i had to move up to the 6mp class of drugs as well, and it IS scary. it is often difficult to know what the right thing to do is - i can relate. i am sure more people on here will chime in, and you should do your own research on 6mp as well. one thing i have learned from this disease is not to depend on the dr's entirely - you must be proactive. perhaps you could just consult w/a surgeon to get the details and then weigh all the pros and cons of surgery vs. meds. the decision is different for everyone. good luck!

Hi UC4me, I understand exactly where you're coming from. I was in the same boat a few months ago. I had been on prednisone for WAY too long. I was unable to taper off without symptos returning. I have only had UC for 5 years but it's been really difficult to treat for me. Other people have so much luck with 5ASAs & I had luck for a period of time but not enough unfortunately. It sounds to me like medically, your next option will be 6mp/Imuran or you could opt to go top down and try Remicade. If you're not responding to 30mg of prednisone, that may be the route to go so you can get off pred quickly. I can't say I would go that route if I were in your shoes but some choose to. I went the 6mp route and I am happy wiht the decision but I have had so many problems with the medication. If you heard what I've been through, you may think surgery is a better option. I started on 50mg of 6mp and saw no improvment. I was on pred and unable to taper off. My 6TGP/6mmp tests were showing that I wasn't getting much theraputic effect from the medication and the toxicity to my liver was high. I had to have blood drawn almost weekly. Finally I added another medication, allopurinol and that boosted the theraputic effects so I was "in the zone". Everything was great. I was getting regular blood work (as you must while on 6mp), eventually my blood count dropped so low, I was in danger of getting very ill. I had to see a hemotologist, I thought I had cancer. I think the doctors thought I had cancer too. I didn't, the counts came back up. I started back on my meds and they are dropping again even though the doses are very low. This 6mp seems like it's not a good option for everyone and unfortunately, I seem to be one of the people who don't do so well on it. I wish I did because I see it as a saer alternative to Remicade. I know many disagree but 6mp has been around for a lot longer. There are people who have long term remission with 6mp, many, many years, Remicade, the longest remission i've heard of is 9 years.

Sorry to go on and on. I know what a tough choice this is and I agree that surgery is an enticing idea but it could also go wrong and then what? I know the chances of serious complications are very low - especially if you use an experienced surgeon. Just make sure if you're serious about surgery, you get ALL the tests to ensure that you have UC and not Chron's. No GI can say with 100% accuracy that it's UC. My GI said al of my symptoms are inline with UC but that she would do every possible test to rule out Chron's before allowing me to have surgery. Imagine going through all that and finding out you're not cured?

I agree with Kate, you could try some alternative therapies. If you click on the UC resources thread on the top of the forum, there is a post about medical vs. alternative options. You may find something worth trying.

You definitely need to take a step in one direction or another, 30mg of prednisone without improvement is a bad situation. Did you start at 30mg? Some people need to start at 60mg or even 80mg to see results. I would hate to be on that high of a dose but if it jump starts the healing, maybe it's worth it?

Good luck with your decision.  I used to use prednisone on an off for really bad flares but eventually it stopped working for me.  I went on Imuran and it has really helped me.  No side effects whatsoever.  It took about 1 month for it to kick in.  No problems with the blood work as well.  It has put me into remission for about the last 2-3 years.  So far so good.  It's not for everyone but I would definitely consider it since I have had nothing but good experiences with it.  If you have any specific questions let me know.

MyUC

UC4ME-

My daughter was in the same boat...she was on 40mg Pred ( but only weighed 65lbs at the time) and was not bale to get off the prednisone. We started 6-MP and she was able to wean off the pred over a few months- she transitioned well onto 6-MP and has had no problems since- she has been off Pred for over a year and on 6-MP for about 15 mo and she handles it just fine. She does have to get blood work at the least every 3 mo but she handles it really well. She is like a normal 10 1/2 yr old- I think 6-MP seems like a good next step for you- also have you tried the probiotic VSL#3?? My dd is on it every day and it has been proven to help with UC- you can research it!

Good luck and keep us posted :)

It looks like you and I have been on a similar course of medications. My UC also was always in some state of a flare so it was not fully controlled.

I have been on Imuran for 9 months with no side effects. I am in total remission for the first time in 4 years. My only regret is that I did not try Imuran earlier. I have blood work done every three months and it has all looked perfect - my doctor said my labs look 100% perfect and are better than they were before I started Imuran. I do know some people have reactions to this drug so it has to be something you closely monitor with your doctor. For me, Imuran has given me my pre-UC quality of life back.

i don't know if this is helpful for you or not, but i am also taking delayed release lecithin capsules and it seems to help w/the bleeding. i order them from a compounding pharmacy in Germany (Klinipharm). you do need a prescription from your doctor. apparently there is work in progress by a pharmaceutical company in germany to make something similar to what i am taking into an actual mainstream drug for uc. i think alba is taking this as well.

     Two years after my initial diagnosis my GI doctor placed me on 6MP.  It took about 3 months to "kick in" along with the prednisone.  I enjoyed a two year remission while just on the 6MP and my maintenance drug, Colazal.  Then started to flare yearly, then twice a year, with each flare lasting longer and longer periods of time.  Always placed on prednisone.  My dosage of 6MP was 50 mgm.  The doctor increased it to 100 mgm  back in 09 when I was really flaring badly.  My liver and pancreatic enzyme levels skyrocketed, so he cut me back to the 50 mgm.  Finally, he talked me into Remicade but took me off the 6MP about two months prior.  Remicade and Humira both failed, I was prednisone dependent, so I opted for surgery much to my GI doctor's chagrin.  This is only my story and I do not advocate having surgery.   It was the best decision I made but everyone must do what they think is right for themselves.  God bless and I hope you feel better real soon!!!