Recently diagnosed - biologics or immunosuppressants?

[gsxfie]

Hi!

I was diagnosed with Crohns this week and am trying to get used to the thought of a chronic illness - I’m sure you all know the feeling.

I am 19 years old and have had almost no symptoms, just some stomach pain from time to time and sometimes bloating. It was actually discovered when I went to my doctor for anxiety and my blood work showed I had very low b12 levels (59!). They first did a gastroscopy which came back all clear, then they took the calprotectin test which was at 182. So I did a colonoscopy last week which showed a lot of inflammation and ulcers in the terminal ileum, and they could only go in about 0,5 inch because of the swelling. Biopsy confirmed Crohns. The colon and rectum were clear. I have not done an MRI yet to see if there is any more inflammation further up.

My GI has talked about the step-up vs top-down option, and to start with either biologics or immunosuppressants (azathioprine is what she mentioned). Today she called me after their weekly meeting and they had decided for me to try Entocort for 8 weeks and Azathioprine.

After some research it seems like biologics nowadays are considered a good first option as it can reduce further complications, give a longer lasting remission etc. At the same time there is the risk of severe side effects, but from what I’ve read it’s not higher than for Azathioprine? Is it “extreme” to start with biologics, especially since I don’t have much symptoms, and is there a risk of the treatment options “running out” if they all stop working after a while?
I’m just a bit worried to start Azathioprine and it not been efficient enough, leading to more complications that could have been avoided if I would’ve started biologics right away? At the same time I don’t want to take a medicine that is stronger than needed for me and being “stuck” with it without any other options, if that makes sense. But I've read a lot of people being helped by Remicade, Humira etc and it seems to work so well for many.
What are your experiences? Which “method” do you prefer?

Sorry for a long post, I’m just a bit confused right now and trying to figure out what the best option would be for me.

Thank you :heart:
Sofie

 

[Guerrero]

I'd start with azathioprin as it's easier to take and also the doctor advice. no need of infusion, nor going to hospital every 4/8 weeks which is quite annoying..

 

[Maya142]

Hi and welcome!
I wanted to address your question about "top down" vs. "bottom up" treatment. It is absolutely not unreasonable to start with biologics now BUT it seems to depend on the country you are in. In the US, "top down" treatment is being used more and more because even though it is expensive, the idea is that if you control the disease quickly you can prevent complications like abscesses, fistulae, strictures etc. which often need surgery.

There is fairly strong research that indicates that biologics do reduce the risk of complications and even of surgery. They are also your best bet for mucosal healing to occur.

They are NOT more immunosuppressive than something like Azathioprine - in fact, they are usually considered less immunosuppressive since they are more targeted. They cause FEWER side effects in our experience, than immunomodulators like Aza and MTX.

In the US, pediatric GIs are actually not using Azathioprine as much now because it has slightly higher cancer risks. It increases your risk of non-melanoma skin cancers and lymphoma - both non-hodgkins lymphoma and this very rare type of lymphoma called hepatosplenic T cell lymphoma, which is seen in adolescents and young adults who are on Aza AND biologics.

For that reason, most pediatric GIs seem to be using MTX in place of Aza in combination with biologics, particularly in the case of young males (the risk seems to be higher with boys/men but it is still a VERY tiny risk).

My daughters are both on biologics. The older one is also on MTX. They have both been on biologics for 8-9 years and have not had any serious side effects with them.

The younger one has been on Azathioprine before and it is actually the only medication she has had serious side effects with before - she got repeated infections, including a staph. infection on it. But you will be monitored very carefully if you do go on it - usually with weekly blood work in the beginning, just to make sure it does not cause your WBC to fall or your liver enzymes to go up.

The one caveat to biologics is that they're very expensive. I do not know how it works in Sweden, but I think you may have to fail Entocort and Aza before you are put on them.

Hopefully someone from Sweden will soon chime in, but I wanted you to know that it is not unreasonable to be put on biologics immediately after diagnosis. Aggressive treatment is your best chance at remission and since biologics are quite safe, they are often used first now. I can honestly say that in roughly 10 years, we have never regretted putting my daughters on them and they have had no issues with infections on biologics - through middle and high school and now college.

I will tag some other parents who have been down this road before, with their teenage or young adult children: crohnsinct, pdx, Tesscorm, Clash, my little penguin.

 

[awoenker12]

I would like to share my experience. I was officially diagnosed back in January after a colonoscopy, and my doctor prescribed me 6mp (basically the same as azathioprine). I gave it about 6-7 months and it just did not do anything for me. Then my doctor said it was time to move onto biologics. They put me on Remicade and has made me feel just like my old self again. No symptoms at all. I guess what I am trying to say that it takes some trial and error when it comes to medication. I would personally try the azathioprine first, and if that does not work, then I would move on to biologics.

 

[Scipio]

Are you male or female? If male I would suggest to try to avoid azathioprine if possible. Young males are at highest risk of the hepatosplenic T cell lymphoma triggered by azathioprine that Maya mentions. It's rare but it's a particularly aggressive form of cancer that you really don't want to risk getting if other options are available.

 

[pdx]

My daughter was started directly on Remicade combined with methotrexate. It took a while to work, but she has now been on this combination for 4 years without very many side effects, and it's worked well for her.

Her case was more severe than yours at diagnosis, though, so I honestly don't know which would be better in your case.

I imagine that you'll probably take entocort no matter which long term medication you end up taking, since both aza and biologics can take a while to start working. My daughter took entocort too, and it seemed effective for her and it doesn't tend to have side effects when used for just a few months. (It's much better than prednisone as far as side effects.)

Good luck--I hope whichever treatment you decide on works well for you.

 

[Tesscorm]

Hi Sofie,

My son was diagnosed at 16 at a children's hospital and, at 18, was transferred to an adult GI. Prior to the transfer to the adult GI, my son was treated only with enteral nutrition formula and no real meds (but, he was stable with the EN). Upon transfer, his adult GI was adamant that a biologic be used (even though my son had no outward symptoms, only MRE's showed inflammation). His reasons were to avoid complications, the most serious of which could be the need for surgery - long term inflammation can cause scar tissue, which cannot be fixed with meds. Scar tissue can cause many complications and can only be treated by the removal of the scarred intestinal area.

I asked about a number of treatment options, including immunosuppressants, and why he was recommending remicade (or, humira as a second choice). His short answer on remicade was that it was the best treatment available, so why not start with the best? Why start with meds that may not work and allow complications to arise that then remicade may not be able to fix? His reasons for remicade over humira... convenience as bloodwork is done at the same time as the infusion, infusion is done only every 6-8 weeks (usually) at a booked apptmt (less likely to forget or delay a dose), more precise dosing... (although, from a medical success rate, he was not opposed to humira). I'm not 100% certain of this but, I believe I've read on more that one occasion that remicade's success rate is greater when it is used as a first treatment and/or within two years of diagnosis.

Given my son's personality, I believe remicade has been the better fit than humira would have been. Humira needs to be injected every two weeks (sometimes weekly), it must be kept refrigerated, it should be injected at room temperature to reduce pain of injection, etc. None of this is 'huge' but does take some preplanning... my son's infusions are every six weeks... he goes, sleeps through the infusion (it takes approx. 2 hours) and leaves. There is some preplanning when organizing vacations (if the infusion date falls within the vacation) (something to consider if you travel frequently - humira is mobile!) and sometimes exams (school was two hours away from our local infusion centre).

My son has now been on remicade for 6 years with only minimal side effects. His side effects have possibly been more episodes of bronchitis and a longer duration. Also a couple of skin rashes. It's certainly possible remicade contributed to this, however, he was living away in residence at this time, so his environment may also have played a factor (FWIW, he has had neither since moving back home after school.)

You're correct in that once you start remicade you can not stop or you risk building antibodies. Once antibodies have developed, you cannot return to remicade (doesn't always happen but, more often than not). However, you can return to immunosuppressants. And, while I don't think I've ever read of it here, I don't believe there's any reason why, if remicade is unsuccessful (now or later), you couldn't then choose to try an immunosuppressant.

Hope this helps...