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6MP, Humira, or Remicade? Doc tells me I must pick one

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Crohn's Disease
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Posted 9/15/2012 7:12 PM (GMT 0)

I had a J-Pouch for ulcerative colitis created about 20 years ago and since then I've had bouts of "pouchitis", some inflamation in the pouch and a little further up.  I'm on Lialda and Sulfasalazine and only have occasional discomfort.  But after my last "pouchoscopy" on Thursday, the doctor said he now thinks I have Crohn's.  I've previously had a blood test that was on the border line between UC and Crohn's.

So at my bedside in the recovery room he said he thinks I have Crohn's and that I need to go on one of the 3 medications.  He's not giving me any help in deciding which one.  He says with 6 MP I need a blood test every month.  With Remicade I need to go to get an infusion for 3 or so hours every 2 months or so, and with Humira I would need to give myself injections.  He said I must pick one.  That my current course of treatment is not an option.  I cant stand IV's and don't think I could give myself injections.

I *really* do not want to go on immunosuppressives.  I am in my mid-forties, with two teenage girls and a full-time job.  And I don't feel bad.  I could understand it if I felt debilitated and the drugs would make me feel better, but aside from infrequent issues with pain or gas or bloating, I don't feel like I'm compromising my standard of living at all now for my illness.  So taking one of those drugs would make my life more uncomfortable than it is now.  And would increase my worries about things like skin cancer and getting communicable diseases.  How dangerous is living with some inflamation? 

And I don't like the bedside manner of my doctor, even though he's the head of the ibd department.  I need to be able to talk to someone to sort through all the choices and consequences.   Are there professionals who specialize in this?  And on top of everything, I would need to get my insurance's approval for whichever treatment I chose. 

This is my first foray into this forum.  I guess I'm looking for advice or where to go to learn more about the plusses and minuses of the three choices.

Thanks,

Mom of 2 Teens

Posted 9/15/2012 11:09 PM (GMT 0)
Momof2Teens - I am so sorry you're going through all of this! I have Crohn's disease and have been on 6mp. I have been in a flare recently and my dr has mentioned Humira might be the next option for me, which scares me!!

I have to say that out of the three, 6mp is one of the "easier" ones. You take a pill once a day and I had to go get my blood drawn at a lab every two weeks to check and see how I was metabolizing the meds. It does take longer to get into your system to start working, my dr told me it could take up to 3 months, but I was willing to wait b/c it was the cheaper option prescription wise for me.
I didn't notice any symptoms right away and actually felt better after a few weeks! The only time I had a major problem with 6mp was after about 8-9 months on it, my dr. upped the milligrams to 100mg from 75mg and I got really sick. Vomiting, stomach pain, diarrhea for about 5 days. Then I was fine, so it could have just been a stomach bug, who knows. But eventually I started getting panic attacks and my heart started beating fast, so they took me off of it. I was in remission for a year after I was on 6mp!!

I'm on Apriso now and entocort b/c I am in another flare. If I am back on meds, I would choose 6mp again at a lower dosage.

I hope this helps! Just wanted to tell you my experience with 6mp b/c it's an older med and people aren't always positive about it, but overall my experience wasn't bad at all.
Posted 9/16/2012 6:04 PM (GMT 0)
IF those were my only 3 med choices I would go w/6MP first in a heart beat.

Actually, I'm on a relative of 6MP. I'm on Imuran (azathioprine). I consider Remicade and Humira a heck of a whole lot scarier than Imuran or 6MP!!

I've been on Imuran since early 2003. It takes a while for Imuran or 6MP to kick in and take full effect so I was on Cipro and Imuran plus my normal Pentasa for the first 6 months I was on Imuran. I opted for the Cipro instead of Entocort which was the first suggested med to assist the Imuran. And you do not have to have blood draws every month w/6MP. It is usually something like draw for "norms", start the 6MP, draw at one week, at one month, at one month, at 3 months, at 3 months and every 3 months thereafer.

It sounds like you are a good candidate for 6MP. Your disease activity is mild enough there is a good chance it will respond well to the 6MP and that you will have the time for the 6MP to take full effect.

Hey, even low grade inflammation does its damage, it just takes a bit longer for the damage to show up. You want to STOP the inflammation. You want to attain full remission not just symptomatic remission.

Good luck and God bless.

Posted 9/19/2012 12:49 PM (GMT 0)
hello, I'm from europe, belgium and I have crohns disease for more than 25 years now. I did use remicade for about 9 years and that every 6 weeks.the last months I did got more and more problems with my scin, rashes etc.
My doctor now recomments me to start with cymzia injections. He said that statistically humira gives more scinproblems so for me that is not an option. The remicade still is sufficient for the crohn itselfs but it causes a lot of side effects. never the lessI've been really goor with it for during more than 8 years. I wish you all the best for the future.
lots of greetings from belgium
Posted 9/19/2012 3:39 PM (GMT 0)
I was on Humira for over 6 months and it didn't help me much.  The shots were very painful to me, even with the ice technique.  I switched to Remicade, it will be 2 years in Nov.  Since almost day 1, felt 100% better and my life is back to normal (aside from the IV every 8 weeks).  I have had no side effects from it and am glad every day I wake up that I started it.  I'm hoping it will last me many more years.
Posted 9/21/2012 12:38 AM (GMT 0)
Mom of 2 Teens, I'd vote for 6MP. I took Humira for about 4 months without any improvement. I think I was already at the point where scar tissue had formed and no medication was going to touch that. I had a resection 4 1/2 years ago. I've been taking Azathioprine (Imuran) for the last two years. I agree with ChronnieToo - it's a lot less scary to me than the biologicals, although it's not a benign medication. There are significant risks with Imuran as well, including increased risk of skin cancer. It always comes down to a risk/benefit analysis. My GI prefers Imuran over 6MP. He told me that Imuran metabolizes into 6MP and something else. The something else may actually be beneficial. I get blood draws every 3 months. I see my GI every time I get a blood draw. It gives me an opportunity to ask questions every 3 months and to stay on top of this disease. It's a difficult choice to make, to take a strong medication when you feel OK. I'm hoping to prevent further scar tissue because I don't want any more surgeries. Good luck!
Posted 9/21/2012 1:19 AM (GMT 0)
Hi MomOf2Teens and welcome to the forums.

Um, I'm going to head in a different direction as far as advice. First off I wouldn't like to hear, "I think you have Crohn's disease." Either I do or I don't.
And since you don't like the bedside manner of the GI, regardless if he's the head of the IBD Dept. or not, a 2nd opinion may be in order.

We recently had a discussion about tests and medications for Crohn's if you would like to have a read-
www.healingwell.com/community/default.aspx?f=17&m=2511307

I've said this numerous times, it never gets old as it's very important, it is just as important for a GI to rule out other conditions since they may produce similar symptoms.
The two diseases share many symptoms but are treated very differently medically.
In Crohn's disease, the location of the inflammation may occur anywhere along the digestive tract from the mouth to the anus. In ulcerative colitis, the large intestine (Colon) is typically the only site that is affected.

I wish you the best of luck and hope you feel better!
Posted 10/2/2012 6:46 PM (GMT 0)
Momof2Teens, reading your post was like reading my own life this is my first time on the site and I'm in the same position you are. I have crohn's I've had it now for about 15 years, I've been on several different drugs but now my doctor say I have to pick a new drug and these new drugs scare me half to death. So I picked Humira...my Ins will not pay for it, It will cost me $1200. a month. I just came back from my doctor and she wants me on Remicaid, years ago my old doctor wanted me on Remicaid and I didn't want it then because of the side effects Weight gain being the biggest problem, I am already over 200 lbs. I have a back injury and gaining more weight will only cause me more pain. I had a anul fistula about 5 years ago and now I have another, they say Humira and Remicaid can cure the fistulas, surgery cured it the last time. I'm stressed everyday over these drugs, I cry all the time, I understand this disease takes over our life, but right now making this drug discission is controling me. I can not handle it and I do not want to take a drug that is this harmful to me. The side effects are worse than the desease.

So what do we do...where do we turn...hopefuly we can help eachother. I don't want to gain weigh but I need to get rid of this fistula, and I'm scared of these drugs. I can't believe there are tears left in me.

Today my new doctor said, "it's your body if you don't want to take the drugs then don't". She got up and slamed her office door. The nurse's looked at me like OMG what just happened. Hopefuly someone out there can help us ease our pain, stress, and worry.

Stressed and scared...by your side!
Posted 10/3/2012 7:48 PM (GMT 0)
"The side effects are worse than the disease."

Really? Maybe for a very small minority of people that is true. But for the great majority, it simply is not true.
Posted 10/3/2012 8:33 PM (GMT 0)
Justcantbeleave, I don't understand why the remicade would cause weight gain, unless they mean that the remicade causes remission, which leads to weight gain (a good thing for most people with Crohn's, who suffer from unwanted weight loss). I am certain that you would not gain weight with remicade unless you also changed your diet.
Posted 10/3/2012 10:18 PM (GMT 0)
The side effects are worse than the desease.

Been said by beave already, but they really are not, except for a tiny minority. And generally speaking, if the side-effects are that bad, you come off the drug. I've been in that situation, both with Crohn's drugs and antidepressants. Oddly enough, it was the mildest class of Crohn's drugs that I simply could not tolerate: the 5-ASAs, such as Asacol. It was exactly like having a severe flare-up of Crohn's, in the days when my disease was mild and I didn't have severe flare-ups otherwise. SSRIs induced similar severe symptoms in me as well.

But 6MP, azathioprine, Remicade and methotrexate were all fine with me - well, not 'fine', because they didn't actually work. But I didn't get any side-effects, apart from nausea with the 6MP and methotrexate. You don't necessarily get more side-effects with the 'stronger' drugs - to the contrary, Remicade and Humira are generally well-tolerated. As for Remicade supposedly causing weight gain, I would basically disregard it. Most people on Remicade do not put on weight and of the ones who do, it would be very hard, almost impossible, to isolate Remicade as the cause, I should have thought.

Believe me: no one actively wants to be on these drugs, including me. I'd rather not suppress even a small part of my immune system. But if I had to choose between active Crohn's and long-term maintenance on an immunesuppessant, I'd choose the latter in a heartbeat. Uncontrolled Crohn's is far from being risk-free.
Posted 10/3/2012 10:43 PM (GMT 0)
Please get a 2nd opinion. As I understand it pouchitis is very common after a J-Pouch. So many doctors prescribe the probiotic VSL#3 (prescription version is VSL#3DS), which is a favorite standard treatment to prevent a reoccurrence.

Not every doctor believes in probiotics for IBD in general, but almost all UC specialists accept VSL#3 as preventive maintenance for pouchitis after J-pouch surgery. Some members in the UC forum have complained that their GIs refused to prescribe VSL#3DS for their general UC because clinical trials showed (so far) that it only prevents pouchitis, not UC flares. So the bottom line is that you may try it for pouchitis.

The following clinical trial was in 2010 but we already knew from personal experience that VSL#3 works:
The American Journal of GASTROENTEROLOGY VOLUME 105 | OCTOBER 2010:
OBJECTIVES: VSL # 3 is a high-potency probiotic mixture that has been used successfully in the treatment of pouchitis. The primary end point of the study was to assess the effects of supplementation with VSL # 3 in patients affected by relapsing ulcerative colitis (UC) who are already under treatment with
5-aminosalicylic acid (ASA) and / or immunosuppressants at stable doses.

CONCLUSIONS: VSL # 3 supplementation is safe and able to reduce UCDAI scores in patients affected by relapsing mild-to-moderate UC who are under treatment with 5-ASA and / or immunosuppressants. Moreover, VSL # 3 improves rectal bleeding and seems to reinduce remission in relapsing UC patients.
Posted 10/4/2012 10:37 AM (GMT 0)
Hello Mumof2teens

I was very interested in your dilemma as we are both in a similar situation. I have had UC for 29 years now and had a Jpouch about 15 years ago. Have always had a few small problems with pouchitis and dealt with that through salofalk enemas. Three weeks ago had a check in hospital and have now been told I have crohns with inflammation for about 30 cm in the small intestine. I wasnt even aware of this and dont feel unwell at all.
My doctor said to go on salofalk tablets 1500 mg / day to control it ( i think in the US you call it Lialda?)
I had never heard of the drugs your doctor suggested and had to google them. Am wondering why such a large difference in medication between both of us?
Would be interested to hear what you choose to do and also why the doctor differs to what I have been told.
Posted 10/4/2012 10:48 AM (GMT 0)
Hi Pottsy i was on Salofalk for about 6 years (with several tapers and double tapers of prednisone during bad flares) it's a tried and tested drug used for many years and can be used for very long periods with little side effects. It is also a drug you can self dose once you start to understand how your body feels (my GI was ok with this after a few years but check with yours before altering dosage). It's the lesser evil that they tend to start you on.

I'm still taking it in addition to 6 MP (apparently to counter some o the bad effects of 6 MP?) if you can control yours on Salofalk thats good news.
Posted 10/5/2012 5:02 PM (GMT 0)
Hi Momof2teens,

I'm a Mum of 3 Girls and it can be very tiring having 3 kids and a chronic illness (lucky me, I have 2). If I wasn't on any meds I don't think I could function. The inflammation needs to be under control. If the inflammation isn't managed, then it will only spread and cause more damage and eventually you will feel sick. Personally, I'd start with a second opinion. Then I'd start with a drug like 6mp, as others have said it's one of the nicer ones. I think, if your disease is fairly mild, then starting you off in a biologic would be like cutting your foot off for a broken toe.
Posted 10/5/2012 5:04 PM (GMT 0)
Pottsy, not sure where you are in the world but here in Australia, if you have mild disease then it's fairly common practice to be started on something like Salofalk first. If that fails, they then tend to move on to things like Imuran and 6mp, or Methotrexate before opting for the biologicals.
Posted 10/9/2012 5:02 PM (GMT 0)
A late addition. I'd vote for Remicade, It's a crap shoot, scary sure, but you need to take a stand. I my self have 2 teens, twin tweens and another tween. You rule it and not it rule you. I had problems with the simpler stuff and went right to Remicade .
Posted 10/20/2012 1:43 AM (GMT 0)
Hello i am 25 years old and hve been on tons of these meds... I have been on these 3 also and my dr started me with 6mp.. but htat caused a very quick elevation in my liver count and had to be taken off right away.. i then went to Humira and all i can say is OUCH.... i started off with one shot every two weeks then went to one weekly... I did ok besides the pain but still had a few off days so then i tried remicade and Its my MIRACLE drug.. I had a flare up last week but that was the first all year.. I hit a year on it this month and i was evne able to start nursing school because it controlled it so well!! the IV sounds scary but honestly you sleep through the whole infusion because of the amount of benedryl you take .. good luck
Posted 10/20/2012 2:58 AM (GMT 0)
I have been on Remicade for 7 years. The expense is burdensome, but Remicade made a huge difference in my life. I get an infusion every 6 weeks. I couldn't function before Remicade. Before that I took Imuran and Pentasa. Those didn't work at all. My Crohns was too severe. I was really scared but everyone has different reactions to any med. glad my dr convinced me. Really, I had no options at the time Humira hadn't been approved for Crohns, so that would have been an insurance issue. Now my problems are strictures from scar tissue.
Posted 10/20/2012 3:35 AM (GMT 0)
I've been on Humira for 2 years now and Imuran for about 4-5 months. And I'm doing really well with them. I started humira when I was 18 and I was really scared about putting on my own injections but they're really easy to do even for a chicken like me. The side effects have not been that bad and really you can't focus on the skin cancer, lymphoma effects because those are rare. And even something so common as birth control can have serious side effects like blod clots. The only symptoms I have ever experienced are nausea,fatigue,and headaches. I'm probably missing a few. But the point is they're not that bad and they've become almost nonexistent the longer I have been the drugs.
That being said before these 2 drugs, my life was a living hell for years. I was always in an extreme amount of pain and everything kept getting worse. By what you said, it doesn't sound like Humira or Remicade would be best for you.Maybe 6mp would be best. It's just odd that the dr. Would suggest biologics for your case.
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