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Corey A. Siegel, MD, MS

Assistant Professor of Medicine
Dartmouth Medical School Director
Dartmouth-Hitchcock Medical Center


February 2010

Question:
My son is 14 years old and was diagnosed with UC in September, 2009. We tried Colazal which showed some improvement but switched to Lialda for convenience, but got worse every day. He was started on Entocort and Florastore but became very sick with bloody diarrhea and complete fatigue, pain and joint pain. He was then given prednisone (40mg 4 times a day) and tapering off every four days. He lost 14 pounds and is down to 106 pounds. His doctor wants him to go directly to Remicade. I am scared of the long term effects because he is so young, but I am also afraid of prednisone. What about 6MP?

Dr. Siegel:
It sounds like your son has steroid (prednisone) responsive ulcerative colitis, meaning that steroids do work for him, but as you suggest, they are not safe in the long term. Therefore, you need another option that keeps him well and off of steroids. If the Colazal worked very well, it might be worth trying again, as sometimes patients respond better to one 5-ASA drug (like Colazal or Lialda) and not the other. However, as he is already losing weight and a switch back to Colazal risks another flare requiring a longer course of steroids, your best option may be to start 6MP (or a similar drug azathioprine). 6MP can take a few months to take fully start working, so he would need to continue on the prednisone (probably at lower doses) for that time period. I agree that trying to avoid steroids is always a good idea, but a few months on lower doses of steroids is OK as long as there is a clear plan to transition to 6MP. If he is not able to stay well while waiting for the 6MP to work, or he cannot easily get off of prednisone despite the 6MP, then Remicade would be the next medical treatment option.

Question:
I am trying to receive Social Security Insurance for my Crohn’s which has left me totally unable to control my bowels. I have tried everything that the doctor’s have given me, but nothing helps for very long. What do I have to do to persuade them that it is impossible for me to work unless they can help me find work from home? As soon as I move I have to run to the bathroom. Sometimes I do not make it.

Dr. Siegel:
There are really two issues here: (1) disability coverage in IBD and (2) persistent Crohn’s symptoms. It is a common problem to have trouble receiving disability for IBD since the standard disability paperwork most often refers to an ability to lift, carry or sit at a desk. Clearly, patients with IBD have problems that are different from patients having muscle, joint or bone problems. Having your doctor write a letter to your employer explaining your troubles might be helpful, especially if you are willing to work from home.

Alternatively, your doctor may be able to specifically comment in the Social Security paperwork about how Crohn’s makes work outside of the home so difficult for you. The second issue is control of your symptoms. I don’t know the details of your Crohn’s, but there are now multiple (and new) treatments available that can be very effective. It is also important to determine if there is still serious inflammation present, as sometimes problems other than Crohn’s can be an issue on top of the Crohn’s (like infections, irritable bowel syndrome, celiac disease). If indeed there is active inflammation and none of the standard drugs are working, you may want to consider a clinical trial (testing a new Crohn’s treatment) or surgery (to take out the affected section of your bowel).

Question:
My son was diagnosed with UC in 2007. He was on Remicade and Imuran until June, 2009 with excellent results. Since he stopped the Imuran he has started to have infusion reactions to the Remicade, requiring administration of Solumedrol to complete the infusion. Does this mean he has started to build up antibodies to the Remicade since stopping the Imuran?

Dr. Siegel:
You are probably correct in stating that he has developed antibodies to the Remicade. An infusion of steroids (like solumedrol) can help in preventing infusion reactions, but this may not be a long term solution. It may be worth considering adding back the Imuran. If he continues to have infusion reactions, or his symptoms start to return, switching to another drug similar to Remicade (such as Humira or Cimzia) may be necessary. These drugs are not yet approved for ulcerative colitis, but in this situation many insurance companies will approve their use.

Question:
My daughter has UC diagnosed in 2009; she was put on Apriso and went into remission. In November she got a swine flu shot and flared. Her doctor put her on enemas for two weeks which helped but did not achieve remission. In December he said the Apriso had stopped working and put her back on the enemas and started 6MP. I researched the 6MP and want to know if this is the best course of action? She is 15 years old. Would Apriso put her back in remission given time? The 6 MP drugs seem scary.

Dr. Siegel:
It is interesting to hear about the flare after the swine (H1N1) flu shot. We do not know of any connection between these vaccinations and flares of IBD, but we do know that getting vaccinated for flu is important. It sounds like it is time to move on from the Apriso. As noted above in question #1, patients may respond better to one 5-ASA drug and not the other, so it might be worth considering a different 5-ASA drug (there are a number of different choices).

However, it is not very likely to work and 6MP is a good next choice. 6MP has been used for the treatment of IBD since the 1970s, and in the doses used for Crohn’s and colitis, overall it is very safe. There are a few rare serious side-effects that you should discuss with your doctor, but most patients tolerate this medication very well, and it can be very effective for treatment.

Question:
I have Crohn’s and had an allergic reaction to Remicade. My GI doctor has me on Humira now and wants me to add Imuran as well. The Humira seems to be working, why add Imuran? What are the additional risks?

Dr. Siegel:
There are two reasons that your doctor wants to add Imuran. First, a recent research study taught us that drugs like Remicade and Imuran work better for Crohn’s disease than when Remicade is used on its own. I believe that this probably holds true for Humira as well. Second, if you had an allergic reaction to Remicade, you might be at a higher risk of eventually developing antibodies against Humira that can cause an allergic reaction and/or cause you to lose your response to Humira.

Although we are learning more about the safety of these drugs all of the time, it does not appear that using both drugs together really adds much additional risk than using just one drug on its own. My opinion would be to use both drugs together. However, since there is still uncertainty about this, a discussion with your doctor about the benefits versus the risks of two drugs versus one is important.

Question:
My 8 year old son was diagnosed with UC, no diarrhea, not too much blood in the stool, not too much pain. He was put on three grams of Pentasa. Do I need to keep him on the medication if he can tolerate the symptoms?

Dr. Siegel:
Almost all patients with UC require some type of treatment. Without treatment, the inflammation in the colon most likely will continue and over time may get worse (and more difficult to treat). Therefore, typically even if symptoms are mild, I recommend staying on therapy for ulcerative colitis to prevent further problems from occurring in the future.

Question:
I was recently diagnosed with Crohn’s. It is very mild. I have not lost weight; I have no pain or fever, only diarrhea and very mild anemia. I have been on Pentasa 500mg 3X a day. The doctor has prescribed Imuran since I am still dealing with diarrhea. I am concerned about the side effects. Is Imuran normally prescribed for very mild Crohn’s?

Dr. Siegel:
Imuran is typically used for more moderate to severe symptoms, but there are some patients with mild disease who can benefit from it as well. The reason to consider using Imuran for more mild disease is to prevent the disease from progressing to lead to more severe problems in the future. The choice to start Imuran is based both on the current level of inflammation, and how much risk your doctor believes you may be at for future complications of Crohn’s disease to develop.

Question:
My son is 24 and has had Cohn’s for one year. He is 6' tall and before he went into the hospital he weighed 189 pounds. He now weighs 135 pounds. He takes 3000mg of Pentasa a day along with a multi-vitamin with iron. Why is he continuing to lose so much weight? His Gastroenterologist doesn’t seem to be concerned with the dramatic weight loss. What can we do to get him back on track?

Dr. Siegel:
Weight loss is a warning sign that the Crohn’s disease is not well controlled. Although other things can cause weight loss as well (in addition to Crohn’s), typically when patients are losing weight I want to look hard for active inflammation and treat is effectively. Pentasa is not a very strong medication for Crohn’s disease, so if he indeed still has inflammation due to Crohn’s, it is time to consider moving on to another, stronger medication.

Question:
I have just been told that I have Crohn’s. I am 48 years old and have not found any information on men my age. Is it rare that I am this old and just finding out that I have this disease? My insurance does not cover Remicade, what are my options?

Dr. Siegel:
Most often Crohn’s disease is diagnosed in the late teenage years or early twenties. However, it can occur at any age and it is not unusual to be diagnosed in your 40’s. There are many medications to use other than Remicade. If those medications do not work and if you need Remicade, it may help to have your doctor call the insurance company. If there are really no other good treatment choices, usually the insurance companies will pay for it.

Question:
I have had Crohn’s for 16 years and have had to deal with bowel obstructions. Hours before the obstruction starts I feel pain on the lower right side. I s there anything I can do at that point to prevent the obstruction? I am currently on 6MP and Pentasa.

Dr. Siegel:
It is fairly common to feel an obstruction from Crohn’s coming on. Once it has started, there is unfortunately not too much that you can do to prevent it. Limiting food intake (sticking with a liquid diet) may help, and avoiding certain foods that are hard to digest (e.g., raw fruits and vegetables) may help prevent the obstructions from occurring. If you do feel that an obstruction has occurred, it is important to be seen by a doctor quickly to make sure no complications from the obstruction are occurring. The continued obstructions while on 6MP suggest that either the 6MP is not controlling the inflammation well, or that you have developed some scarring that might require surgery to repair.

Question:
I was diagnosed with UC 3 years ago. I have been in remission for the onset after being transfused with two pints of blood. I am on 4 capsules of Asacol a day and have been reducing the dose by one every month. I am taking only one capsule a day. There is no blood, I have normal bowel movements, no ill effects. Has the ulcer healed and can I stop taking the medication?

Dr. Siegel:
It is first important to establish that you do indeed have ulcerative colitis, as opposed to an infection that looked just like ulcerative colitis at that time of diagnosis. This can be sorted out by having your doctor review the original biopsies of your colon, or by repeating a colonoscopy now to look for any signs of active or healed ulcerative colitis. If it does appear that you do have ulcerative colitis, then typically doses of Asacol of at least 2400 mg (either six 400mg capsules or three 800mg capsules) used indefinitely are needed to help maintain a long-term remission.

I often use the analogy that we don’t stop blood pressure pills once we have someone’s blood pressure back to normal, but we need to continue the medications to keep their blood pressure under control. It is the same for Crohn’s disease and ulcerative colitis.

Question:
I have been diagnosed with Crohn’s. I also have anklosing spondelitis, RA, degenerative disks, and joint disease. I am a 52 year old female. I also have a sore on the front of my leg which the doctor said is linked to the Crohn’s, and is from cellulitis. What can I do to prevent and treat the sores?

Dr. Siegel:
There are a number of skin problems that can occur with Crohn’s disease. The sore on the front of your leg may be something called pyoderma gangrenosum, or alternatively erythema nodosum. These typically go away when properly treating the Crohn’s disease. Therefore, it may be necessary to change your Crohn’s medications around to get better control of the disease. It is possible that you have cellulitis, and if this is the case, antibiotics are the most helpful treatment.

 

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Corey A. Siegel, MD, MS
 
 
 

 

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