Prednisone/6MP OR Humira/6MP must decide

[Livvies Mom]

We have met with the doctor and he wants to start one of the above two protocols. He would start 6MP right away along with Prednsone OR Humira. If Prednison, she would taper off at 8 weeks and see if the 6MP works alone, If Humira, she would start right away and stay on it indefinately.

He has discussed the pros/cons with us and I have done a lot of reading, but I am very interested in anecdotal stories, as YOU may mention something we haven't thought of yet....either short term OR long term.

She is 15, just diagnosed Crohns of the ileum, no previous medications. Her symptoms are fairly mild, but her ulceration is fairly severe.


Could I have your thoughts on these two choices? Thanks so much

 

[lilac]

my experience with these drugs:

6mp: had 9 years remission with it then it stopped working. Had terrible fatigue and one or two niggly side effects but my quality of life was normal. i would trade anything to get that back right now.

prednisolone: common to become steroid dependant. magic drug until you try to taper off. I keep flaring when I reach a certain dose. Then theres the eternal hunger, moonface, joint pain...

Humira: I take that just now. didn't feel anything on once a fortnight injection, just been put up to weekly. Haven't made up my mind if there is some progress or not.

not an easy decision to make. I wish her well *hugs*

 

[Clash]

I would go for over the meds with her and their side effects. C was 15 at dx and the dx'ing GI put him on pred while we were waiting for switch to ped. GI. Side effects are common with pred. My son got all of them, acne, bloating, bad moon face, restlessness. Since the pred didn't seem to provide benefits for him(this is rare though) then the side effects were not worth it for him.

If I had to do it all over again we would've replaced pred with EEN. But, outside of that I would've made sure C was more prepared for the icky pred side effects.

I hope you get great results with whatever you choose!

 

[alex_chris]

Those are actually three different options, at least in the currently accepted view of things:

A. Corticosteroids (pred) induced remission followed by thiopurine (6mp/aza) treatment: Still used in low risk patients who have little in terms of symptoms, and who do not fall into the high risk Crohn's group. High risk Crohn's elements are diagnosed below age 30, fistulas or abscesses, broad spread of ulcers throughout the intestine, continued problems for a longer time, history of surgery, narrowings in the smaller intestine (Strictures) etc. The two elements of high risk from your description would be the prevalence of ulcerations and her young age. So that seems a borderline case if she really is doing fine with little to no symptoms (that is no diarrhea, no bloating, no pain, no fever, no decrease in body weight, no vitamin or mineral deficiencies due to malabsorption etc.)

B. Humira induced remission and Humira mono therapy going forward: Used in high risk patients and/or patients which do not respond to corticosteroids or do not tolerate 6mp/aza.

C. Humira/6mp combination therapy long term: Used in high risk patients and patients which do not respond to corticosteroids.

According to the most often quoted study of biologics mono therapy vs. thiopurine mono therapy vs. combination therapy, combination therapy statistically is most effective, with biologics mono therapy in second place and thiopurine mono therapy in third place:
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After 26 weeks of treatment, patients getting the combination had a 57% chance of disease remission, compared to 44% of those getting Remicade alone and to 30% of those getting azathioprine alone. Similar results were seen after 50 weeks of treatment.

The combination treatment worked even better in patients with colonoscopy-confirmed disease and blood-test evidence of inflammation. Among these patients, 69% achieved remission with the combination treatment compared to 57% of those on Remicade alone and to 28% of those on azathioprine alone.
-------
http://www.webmd.com/ibd-crohns-dis...414/combination-therapy-treats-crohns-disease

To make a long story short, as far as I understand it, the reason why 6mp/aza (6mp and azathioprine are the same effective drug, aza just converts to 6mp in the body) as a long term mono therapy is still used over e.g. humira along or humira and 6mp, is because we still don't have that much long term data on biologics such as humira and there is a slightly increased Tb risk for humira as well as some other side effects that do not exist of 6mp.

One way to go is to start with pred, taper off, see if there is clinical remission and try to keep her in long term remission with 6mp. This is the statistically harder route and less likely to succeed.

The other way is the one more commonly used these days, that is humira long term (no 6mp), which is more effective than 6mp alone.

Lastly, this is where doctors in various countries have different opinions on, 6mp and humira long-term, together. We don't know what the long term side effects of combination therapy are, there is just is not much in terms of data. We know that short term, the serious infection risk is not higher than for humira alone or 6mp alone, rather the above quoted study even shows it is lower. This is by far the most effective way we have today to induce long-term remission in Crohn's patients, but also the one way forward with the biggest question mark in terms of what it means for increased risks from such therapy.

 

[Livvies Mom]

Lilac and Clash,
Thanks for sharing your experiences. It helps so much!

 

[Livvies Mom]

Alex,
Your post was so helpful. It took everything my doctor told me, but in more detail in an easier to understand way.

As a family, we have decided to go with prednisone/6MP for now and reevaluate in the upcoming months. 1st because she is not ready to sign up for more needles. I suppose she will be getting better acquainted with needles as her treatment progresses, and then perhaps she will have a change of heart, but right now that is a big deal to her. 2nd, wishful thinking that she will be one of the lucky ones that manages on minimal meds....if she goes top down with Humira now they won't try other bottom up therapies.

So the decision is made. I do worry that we will later realize we should have started Humira sooner so she could begin healing the tissues before they become more damaged.

 

[Maya142]

Humira is a pretty painful shot. My daughters hated it but did get used to it. If she does go on to a biologic eventually, I would ask about Remicade first - it's an IV and it's much less frequent than Humira. With my daughter, we went straight to Remicade and MTX (plus Entocort, which is also a steroid but tends to have fewer side effects than Prednisone).

Good luck! Hopefully 6MP will be her miracle drug!

 

[Johnnysmom]

My son had the Prednisone and 6mp. He has been in remission since that time (for 3 1/2 years). Humira was not offered as an option at the time of his diagnosis and I don't know if that was based on the state of his illness at the time or if it was just the personal philosophy of his GI at the time.

The only thing I didn't fully understand at the time we were making the decision about meds that I think may have changed our choice was that the growth window during puberty is relatively small and it really is important to get things quickly under control at that time. I believe as a young adult, if your daughters disease remains very mild a switch to 6mp could be made after she is done with puberty and things are under control. You really can't get that time back, but maybe at 15 she is done growing??

I have also read that using biologics early in disease course can actually alter the disease course over time resulting in a more mild course.

Whatever you decide, don't beat yourself up about the outcome. It is impossible to cover all the what ifs, you just do the best you can.:ghug:

 

[alex_chris]

I have also read that using biologics early in disease course can actually alter the disease course over time resulting in a more mild course.

That is based on the fact that if people don't have inflammation because of having biologics, they don't have scaring in the intestine and don't need surgery, which in itself can lead to more problems, more surgery and more troubles.

Or in other words, the reason why any medication (be it biologics or azathioprine/6mp or anything else actually) is recommended for everyone (especially teenagers) is because people require a few years or even longer to get uses to Crohn's and manage it.

Having said that, there are also quite some people who start out with biologics and still get into trouble. So, the "altering the disease course" is basically the meaning of "if you don't take meds, you get into troubles, so take meds and it is less likely that you have problems" statement.

 

[simigreg]

I have taken 6 MP (mercaptopurin) together with prednisone just a few weeks ago. I tapered off the prednisone while beginning the 6 MP in Sept.. The Humira (Adalimumab) I would avoid if at all possible. Patients treated with HUMIRA are at increased risk for developing serious infections that may lead to hospitalization. I had no issues with the 6 MP until I was about 5-6 weeks into it's use. The 6 MP is known to take weeks to be of benefit and can lower your white cell count requiring bloods tests to monitor your condition. I also developed headaches then which were not pleasant after the 6 weeks time period. I have since altered my diet to avoid the side affects of the strong medicines my
gastroenterologist prescribed which include the ones listed above. I am about 1 month into avoiding certain foods and have great success with a diet that separates the carbs from the proteins during the same meal. I still eat proteins and carbs but now just not in the same meal. I now have quit all medicines and have not had a return of the nasty symptoms. Worth a try since it has NO side effects and potential rewards. I can provide more details if you wish The doctors only seem to suggest strong meds and do not go to the root of the problem :thumbdown:

We have met with the doctor and he wants to start one of the above two protocols. He would start 6MP right away along with Prednsone OR Humira. If Prednison, she would taper off at 8 weeks and see if the 6MP works alone, If Humira, she would start right away and stay on it indefinately.

He has discussed the pros/cons with us and I have done a lot of reading, but I am very interested in anecdotal stories, as YOU may mention something we haven't thought of yet....either short term OR long term.

She is 15, just diagnosed Crohns of the ileum, no previous medications. Her symptoms are fairly mild, but her ulceration is fairly severe.


Could I have your thoughts on these two choices? Thanks so much

 

[Clash]

The doctors only seem to suggest strong meds and do not go to the root of the problem

Unfortunately, in younger children the disease tends to be more aggressive and generally requires more than diet alone to treat. You will find many parents that have tried diet alone and had the disease persist. A child has many more years to deal with this disease and therefore it is important to get the inflammation under control. Simmering inflammation can lead to surgery and once surgery is performed the odds of further surgery increases.

As a parent, I feel that most parents here are well aware of the serious side effects that are rare but can occur with drugs such as 6mp and biologics but the risk of untreated or under treated inflammation can lead to severe complications as well.