Need opinion for treatment

[Kpzone]

DS is 18 w/Crohns Ileitis diagnosed about 1yr ago after 60# wgt loss, nausea, vomiting, diarrhea and abdominal pain (symptoms began more than a year prior to dx including malnutrition due to malabsorption thus anemia, vit d def etc...). All the 'typical' tests were done upper and lower to make the dx. First started only on Pentasa 1000mg 3 times/day. No suggestion of supplements of any kind. Some relief but still with symptoms of the GI tract. Upped Pentasa to 1000mg 4 times/day with minimal effect and now migraines (never had one in his life but was diagnosed in the ER) then erythema nodosum on lower extremities (VERY painful I might add for him). Then Gastro added 50mg of mercaptpurine. Moderate effect but then Uveitis started. Upped mercaptopurine to 100mg daily and here we are still with pain in the abdomen during physical exertion (anyone ever get this with CD?). DS is still in HS and gym is difficult for him. 2 days per week of diarrhea. He gets rectal pain & inflammation also so Gastro added Canasa suppositories recently. During all these med changes, the only labs that were checked were CBC & BMP. When I ask about any others (I am a nurse so I am not completely ignorant of the disease (and I have now studied significantly since his diagnosis but nor am I an expert) I am told "why bother they will be elevated anyway". I think I really ticked off the Gastro today with some rough questioning of meds, labs & treatment. I was basically told "this is as good as it gets. CD is NOT curable we only treat the symptoms. He is internally inflammed so the tests will show this always. We will treat the other EIM's as they show up." Maybe you need to go for a second opinion since you don't trust me. (YES, that was my next step but he beat me to it!!)

My questions for you since you are the real experts in this ugly disease: Am I being unrealistic in my expectation that my son will not live with constant pain and symptoms? I thought remission meant freedom of symptoms?? During 3 ER visits the labs did come back that the inflammation was improving but symptoms did not indicate the same. Should I push for medication changes (Gastro thru around Humira & Remicade but I am very reluctant with my doubts on his treatment up until now)?? Yes, I will get a second opinion but for those of you who ever attained "remission" were you free from CD symptoms?? Is this really "as good as it gets"?- I am just a concerned mom................thank you for any input...............Kathy

He has also been on Uceris for about 9 months now. Was emotionally not able to tolerate straight prednisione. MD would 'like to get him off this' however each time it is decreased the symptoms return with a vengeance.

 

[alex_chris]

Kathy, first, very sorry that your son got these problems. A chronic disease like Crohn's ain't easy to manage and if it is active, it really is interfering with life in a way that makes you angry and frustrated.

First, yes, remission means being pain free and virtually symptom free. I have to admit, I didn't experience real remission, only "somewhat in remission" for more than 10 years after my diagnosis. Only in the last 3 years have I been virtually symptom free with only the very rare discomforts following eating something bad etc.

Second, from what you describe (2 times diarrhea a week, pain etc.), his Crohn's is pretty active at the moment. Active Crohn's, especially, for people at your son's age need treatment to ensure that scarring in the intestine doesn't lead to strictures, which could lead to blockages and potential surgery.

Third, the PEntasa he is taking does have virtually no effect on Crohn's located principally in the ileum, because Pentasa's principal effect is on the surface of the intestine and requires some time to work. Pentasa works in the colon, but not really in the smaller intestine, which is why it is prescribed for UC patients but has been stopped prescribing by doctors for Crohn's patients except for those with virtually no symptoms who want to try whether Pentasa works for them.

Fourth, 6mp (mercaptopurine), is, as you probably know an immunosuppressive. It is a long term maintenance drug which works for quite some patients, however, one thing gastros (who aren't really specialised on Crohn's or aren't good at their jobs...) unfortunately sometimes don't mention is that 6mp cannot induce remission. It is only a medication which can HELP maintain remission.

Fifth, before biologics such as humira and remicade were around (in the 1990s and early 2000s) the usual course of action for a 18 year old with the symptoms you describe was a. steroids for several weeks, probably months, such as prednisone, b. once the person starts to feel better, tapering off the pred and c. all the while starting a maintenance med, which principally was azathioprine or 6mp (or mtx, but that was the second choice).

Sixth, ever since humira and remicade and other biologics came along, biologics are the first line treatment for anyone with more than mild Crohn's, especially for patients below the age of 30 with several different symptoms which cannot be controlled otherwise. Unlike 6mp, biologics help in inducing remission and are statistically much more likely to help. While it is definitely "easier" to just take two pills a day (6mp), compared to remicade (infusions) and humira (injections), whether biologics are more dangerous long term than 6mp is debatable. Both treatments can have side effects and may lead to an increased cancer risk for certain cancer types (especially lymphomia), but compared to e.g. smokers, the increased cancer risk is rather small.

Lastly, is there any way you can get your son to come to this forum and just read various posts on how people manage Crohn's? Or have him read through articles and information on the internet starting with wikipedia? When it comes to Crohn's, information is very important. For instance, many people focus too much on medication and forget that Crohn's is a chronic disease that is managed best through a wide variety of different things - from figuring out a right "diet" (Basically, whatever doesn't trigger problems for him) to stress relief, to sport, to vitamin and other supplements that counter malabsorption and deficiencies related to malabsorption to just sleeping well.

Hope this helps a bit, I am sure others will be along to give you more answers.

 

[Kpzone]

Thank you so much for the detailed info! I really appreciate it. It is difficult with this age group to get them to understand that even though they cant see the damage being done that it is there. Yes, I will try to get him on here to read from people who are living exactly what he is. He actually read your reply and made some comments about how he needs to do more for himself so he doesn't end up 'needing surgery' or making himself worse. I do know enough to realize that I can't possibly understand what he is going through. I do need a second opinion for him. From your info I can see that more needs to be done. Question: I see that you are from Germany- according to my gastro the 'usually course of treating CD' is using the least amount of medication with the smallest side effects first thus Pentasa then 6MP then Humira/Remicade.....there has been debate about the treatment protocol (or so I have read) about starting with the "big guns" first such as Humira/Remicade to 'quickly achieve remission' and then downgrade to those that will maintain that remission. Do your doctors start with the later as practice? I was just curious because this seems so logical to me. Thank you again for your information. I have learned so much more from this forum than I have from our own doctor! Best regards, Kathy

 

[alex_chris]

Thank you so much for the detailed info! I really appreciate it. It is difficult with this age group to get them to understand that even though they cant see the damage being done that it is there. Yes, I will try to get him on here to read from people who are living exactly what he is. He actually read your reply and made some comments about how he needs to do more for himself so he doesn't end up 'needing surgery' or making himself worse.

That is good. I know when I was his age and was just diagnosed, I really did not want to hear much about Crohn's. I actually I ignored it for several years, was in pain most of the time with active inflammation (I just was on Pentasa). I unfortunately ended up needing surgery. But since then, although in slow steps, things have improved. 4 years post surgery until 2007 I was generally doing well, but I wouldn't say complete remission. Then 3 years of slow and progressive problems, especially because I did not really understand how to generally keep fit and fight deficiencies, especially I was severely iron deficient.

From 2010 to 2012, things were better, but end of 2011 and beginning of 2012, I had another active phase. Since spring of 2012, I however, have Crohn's pretty much in control. Looking back, I know it was hard, but just to reiterate, it is definitely possible, even for cases like your son who has quite a lot of symptoms. But it is a bit of a journey, unless one figures it out very fast (I did not).

Question: I see that you are from Germany- according to my gastro the 'usually course of treating CD' is using the least amount of medication with the smallest side effects first thus Pentasa then 6MP then Humira/Remicade.....there has been debate about the treatment protocol (or so I have read) about starting with the "big guns" first such as Humira/Remicade to 'quickly achieve remission' and then downgrade to those that will maintain that remission. Do your doctors start with the later as practice? I was just curious because this seems so logical to me. Thank you again for your information. I have learned so much more from this forum than I have from our own doctor! Best regards, Kathy

I think there are definitely differences between different countries and treatment protocols, but generally in this day and age and the day of the internet, I think most good doctors in Western countries see it the same way. A very good read (although technically somewhat complicated) is the American Gastrological Association's guidelines on Crohn's management. http://www.gastrojournal.org/article/S0016-5085(13)01521-7/fulltext
If you look at the last chart on the PDF here http://www.gastrojournal.org/article/S0016-5085(13)01521-7/pdf it shows a summary of today's mostly accepted approach to moderate to severe Crohn's. Just for clarity's sake, "mild" when it comes to Crohn's means the patient generally doesn't have any or very light symptoms and isn't affected much at all by pain, diarrhea etc. Most people are "moderate to severe", unfortunately from your description your son too. By the way, this is not a bad thing, the classification its just used by doctors to indicate "this person needs treatment" opposed to "it is so light, patient has no complains, so let's don't do anything".

To answer your question of the two approaches, a. starting with the big guns (top down) vs. b. starting from the buttom up, the discussion principally is whether a patient should be treated with humira or remicade (and potentially in addition with an immunosuppressive) right at the outset after the diagnosis to make sure no scarring or damage to the intestine can develop or whether it is better to fight any active inflammation with steroids (such as prednisone) first and then see if "less invasive" (debatable if immunosuppressives real are) maintenance drugs can be used such as 6mp or azathioprine to keep the person in remission.

However, this bottom up vs. top down debate only relates to the first months after diagnosis. Once less invasive methods fail and the person cannot stay in remission or has constant problem, the answer (as outlined by AGA in the links above) is very clear - the patient is prescribed biologics (tnf-alpha blocker) and potentially even in addition continues or starts 6mp or aza or mtx. The goal is, after all, to get the person into remission quickly and keep him or her there.

Long term, the question is then whether people can get "off" maintenance medication again. Back in the old days when I was diagnosed (1999) the conventional wisdom at least for 6mp and azathioprine was to use it 4-5 years and then try keep in remission without it. Often that does not work. People really need to have figured out to stay in remission through diet, stress relief, sport etc. without meds. I tried it twice already (from 2008 to 2010 and last year for 4 months), both times I was getting back on aza because I needed to. I will try again. The same holds true for biologics, although I am probably the wrong person to ask about getting off of biologics, as I never have been using them.

In any event, to sum up, I would read the general guidelines by AGA and quite honestly, considering 1 year of problems, pain, weight loss etc., biologics seem a logical choice. Of course, treatment should not stop there, at the end everyone has to figure out a way to deal with Crohn's, which may take some time. P.S. if you are asked Humira vs. Remicade, Humira is definitely the more convenient option, because it can be self injected. A good friend of mine has Crohn's and she is on Humira and she loves only having to inject every few weeks, rather than remembering taking an immunosuppressive in the morning and the evening like me (I do it with those 7 day pill dispensers next to my tooth brush, that I refill every Monday morning - but that is also required because I take iron supplements, Vitamin D3 (Really important for Crohn's patients), and a combination pill with magnesium, zinc, B6, B12 etc.).

Cheers and all the best,
Alex