Starting 6MP

[traci0531]

I saw my gi today. We had spoke over the phone and discussed starting Humira. Today, he approached me with trying 6MP first. I did the bloodwork, TPMT, that will help determine how I will tolerate it. He again mentioned the possibility of doing a resection. I am also have a small bowel followthrough next week. I'm a bit disappointed because I thought I'd be one step closer to starting Humira when I left. Now, I feel in limbo still. I can't taper off the prednisone without terrible symptoms returning. The Entocort may be helping, but I don't know how much. He thinks, because I'm young and healthy otherwise, taking the 3-5 inch section of my small bowel out and staying on medication like 6mp may make me go a long time with no problems. Any thoughts on 6 MP? I'm worried he's still gonna push me for surgery. Maybe I would be all better? I don't know.... Today has not been a good Crohns day.

 

[mom2girls]

My 15 year old just started 6mo over a week ago. I was so afraid to put her on such a toxic drug but she seems to be doing very well on it thus far. She hated being on steroids. SHe gained weight...had chest pains...couldnt sleep...and when she got off her face broke out with HORRIBLE acne...so bad it hurt. Her last flare up we chose to do EN...a formula based diet instead of steroids. Not a lot of Drs will approve this...but hers wishes more parents would go this route. It has been great...she has rough days where she doesnt want to drink it...has been on it almost 2 months...no food just this formula...but it is still better than steroids. She feels great...and her personality is much sunnier. Hang in there. I had ulcerative colitis when I was 17....and I have been in remission for 24 years

 

[tsm1110]

i have been taking 50mg/day of 6mp since 2005.i have to take 25mg in the morning and 25mg night.when i took the 50mg at once i was shaking a lot so splitting the dose stopped that.it seemed to help until last year i started having more flare ups so i now have remicade infusions along with 6mp.i do have blood work done every 6 months now to check the levels in my system and to check my liver.when i first started i had blood work weekly for a while.even after surgery your doctor may still suggest 6mp.i have heard it can take 3 months before 6mp will have any effect.i was scared at first after reading the possible side effects including a higher risk of cancer but i out weighed the risk with the possible benefits.i hope this helps.

 

[Manzyb]

hi Traci!

I know the side effects of the 6MP can sound scary, but all of the other drugs out there have scary side effects as well.

I can understand your frustration right now. A lot of people have great results with 6MP. I think you just have to weigh the pros and cons of both.

The 3-5 inch section he's talking about maybe removing, is there scar tissue there? If so, then surgery would be the way to go there because no amount of medicine is going to reduce or make the scar tissue go away. I'd go ahead and do the surgery first if that was the case. However, if it is inflamation without the scarring, I'm not so sure I'd go the surgery route, and I'd probably try to do the Humira and 6MP. Don't let the talk of surgery scare you. It is not a last case scenario like some people may think, but it can greatly imrpove your quality of life.

If you have any doubts on what your doctor is telling you, maybe seek a 2nd opinion, too?

I hope once you get the small bowel followthrough he can give you a more acurate picture of what your options are. I hope that this has helped you some!

Sorry you are having a bad Crohn's day, I hope tomorrow is a better, healthier day for you.

 

[hawkeye]

I've been on Imuran since 1991 and credit it with keeping mme generally in remission since then, haven't had any noticeable side effects.

 

[traci0531]

mom2girls, that's great that she's doing good on it so far. Yes, the whole prednisone side effects are definitely not fun. I feel like a teenager all over again with this crazy acne. I also hate that I can't sleep and feel so jittery.

 

[traci0531]

tsm1110, I have read that splitting up the does like that helps. Yes, it seems like getting reg blood work is extremely important when taking 6-MP. Yeah, he said if we went the surgery route, that he'd want me to still take the 6-MP or Humira. I guess he thinks trying 6-MP first is the way to go and adding Humira later on. Thanks for your input.

 

[traci0531]

Manzyb,

You are so right! They all seem so scary! I guess because I had already read up on Humira prior and was expecting to start the whole process, it caught me by surprise when he through out the 6-MP and surgery again. The 3-5 inch section, as far as I know, is just inflammation. I've been having a lot more pain after eating, even with a high dose of prednisone. He wasn't able to get all the way through my small intestine during my first colonoscopy. He mentioned the possibility that the area could be a stricture, and that if so, surgery would be the way to go. I'm hoping it's just inflammation still. I just am not handling the whole surgery possibility well. It frightens me. Thanks so much for your input.

 

[Manzyb]

Oh I hear you! I was terrified before my surgery. I may have been over dramatic because I was a new mom and all, but I was crazy about something happening to me durin he surgery. All went fine as expected though! It's super scary, and I know you do want to hear it, but if it is strictures like mine was nothing will take that pain away until it's taken out. It did make huge improvements .

It is super frustrating when you think you have a plan and you psych yourself up for it and then they switch it back up on you. Please let us know how things are going for you!

 

[traci0531]

I definitely will! Next appoint
ment is the 24th, so not too far from now.

 

[kh216]

I have been on 6mp and Asacol and the 6mp has worked very well for me. While there are possible side effects with 6mp, there are also possible side effects with Humira too. I take 75 mg of mp and don't have any side effects from it. It is also nice to be able to take medicine in pill form as opposed to injections. I will say, however, that 6mp does not work right away; it takes time to build up in your system. It generally takes between three to six months to work. While I had to wait for it to work, I was also on Entocort and sometimes even Prednisone for flares. I also had to get regular blood work to check my blood count and liver function levels.

I hope you get some useful information for the small bowel follow through. This should determine whether or not you have stricture and how bad it is. I have had strictures before but I was able to "wait it out" before the medicine controlled the inflammation. However, if you are in a lot of pain, then you will need to decide if you want the surgery to give you relief.

Hope all goes well for you.

 

[traci0531]

Well I had the small bowel followthrough today. The radiologist said he only saw the one area of inflammation. I guess that's good to know that there's not anymore places of concern at this point. My Dr is going to push me for surgery I think judging off my last appointment. I guess it makes sense. Get that area taken out and stay on meds to stay in remission. I don't know. Surgery seems so scary to me.

 

[kh216]

If I were you, I would see another GI doctor and get a second opinion. The problem with surgery is that it doesn't cure Crohn's Disease. The surgery gets rid of the inflammation for some time, but then it comes back. If your appendix is involved, I would definitely say go for the surgery or if you tried all the Crohn's meds and they didn't work, I would also agree with surgery.

I think that getting a second opinion would give you peace of mind. Try to call your primary care doctor and ask for a recommendation for another GI doctor.

If, however, you are in a lot of pain and feel you cannot wait, then you may decide to opt for the surgery. Good luck to you.

 

[tsm1110]

I agree with kh216.i would get a second opinion.it cant hurt.i also feel i am very close to needing surgery.my doctor would only like to use surgery if it was absolutely nessesary.i have been on pentasa,6mp and remicade infusions every 6 weeks and i have not been able to get inflammation under control in a section of my small bowel this past year or so.my GI did say that after surgery i would be scoped every 6 months for the first few years to make sure the section was healing properly and that the disease had not returned to that area.i know its a big decision and i wish you luck.

 

[Smika]

I'm going for surgery in less than 2 weeks to remove another foot of small bowel. I also had surgery 16 years ago and had 4 feet removed. Surgery was the BEST thing I ever did! I was in remission and medication free for about 10 years before I started with flare ups again. I would be greatful right now for a week of good health let alone 10 years, lol. Surgery is scary for sure due to complications from the surgery itself. But for me, the risk is worth it and I can't wait to get into the operating room. Best of luck to you! Its a hard decision.

 

[traci0531]

I am definitely having more pain. Last night was probably the worst I've had in quite a while. I will def look into a second opinion before I decide on surgery. Honestly, I kind of feel like it would be amazing to feel like myself again and would be so happy if surgery provided me a long time symptom free. Yes, he said my appendix would also be taken out as well if I did the resection. I'm hoping he calls today and gives me some more feedback on the small bowel study and the severity of the inflammation. Thanks for all your advice. I'm so glad I have this to come to.

 

[hawkeye]

What about the entocort or prednisone with the Imuran to see if they can get the inflammation under control. This may be a point of discussion along with the second opinion. I am on Salofalk as well, but I don't think it is effective as the Imuran.

 

[kh216]

In 1983, I had resectioning surgery because I had severe pain and didn't even want water. I had tried all the medical options that were available back then, including Prednisone, and they didn't work. When I agreed to the surgery, they did not know how much intestine they were going to take out. Thank God my surgery went well. They took out 6 inches of large intestine and found out that I had a ruptured appendix, so they removed that too. It was great. I was in remission for a long time after that.

Now the theory is to put a patient on a Crohn's med after surgery to try to keep the inflammation from coming back.

I really hope that you get the right help. I would hate for you to have to stay on Prednisone for too long. Surgery is one option but Humira could be another.

If there is any possibility that your appendix is causing you problems, then surgery would be the right thing to do.

 

[traci0531]

I'm currently taking 9mg of Entocort and 30 mg of Prednisone.

 

[hawkeye]

OK, didn't know about the pred.

 

[LadySmith]

I have taken every med in the book. My docs also try and tell me resection may be a good idea but I'm not so excited about surgery. I am 22 yrs now and I was 18 when my issues started. Anyway, I tried 6mp last year and ended in the hospital for 2 weeks because of pancreatitis. Just pay attention to your symptoms and try to distinguish your regular abdominal pain from ' new ' pain. A flare up is painful, but pancreatitis was unbearable.

 

[traci0531]

I'm still waiting to hear back about my lab work. Hopefully, I hear something today. I'm anxious to start this new medicine to see if it is going to help.

 

[kh216]

I do want to let you know that 6mp does not work immediately; it takes time (about 3 to 6 months) for someone to feel the benefits. For me it took 5 months and while I waited for it to work, I took Entocort and Asacol and sometimes Prednisone when I was in a flare. For me, the wait was well worth it because the other drugs kept me comfortable. Now I'm off Prednisone and I have also weaned off of the Entocort.

 

[traci0531]

I did hear back from my gi on Friday. I have already taken one TPMT test about a week ago. I believe that one was to see how it metabolized. The nurse said I need to come in again tomorrow for the genetic TPMT. What's the difference?? Anyone taken two different tests before even starting 6mp?