Anxiety about having son start 6-MP

[jland25]

Hello:

I was wondering if anyone had some initial anxiety about his or her child starting 6-MP. My son was diagnosed with ileocolitis in early March and has been on Prednisone and Flagyl since the 15th, with great improvement symptom-wise and on his blood work.

The doctor wants to start him on 6-MP ASAP. I know we need an exit strategy for the Prednisone, but the risk of lymphoma, particularly HSTCL, is very scary to me. I have an indolent (non-active) lymphoma myself which I think is adding to my anxiety. My son has no markers for this--or any--lymphoma, but it weighs on my mind.

I know we have to treat the Crohn's. I'm not one to stick my head in the sand at all. As an aside, my son also has autism and I was pushing for a diagnosis and for treatment when he was just 2 1/2. Of course, back then everyone said autism would be our cross to bear, as if hardships are doled out evenly. Then along came Crohn's....

I asked the doctor about starting with a biologic, as the risk for this particular lymphoma has not been reported with a biologic alone. He said he didn't want to start "at the top" because if my son doesn't respond well there's less options going forward, which also makes sense. He also does not think Entocort and/or Pentasa are effective given the extent of my son's disease.

I'm a single mom and while I have great support, the decision is mine alone. I guess I'm just wondering, from a psychological standpoint, how folks got over whatever concerns they might have had about treatment.

Sorry if I'm rambling. The doctor, a man I like very much, is really pushing for us to move ahead with the 6-MP, so feel as if the clock is ticking.

Thanks! I feel very lucky to have found this forum.

 

[Sascot]

Hi, I also was very reluctant to start my son on 6mp. I put it off for 6 months since he was feeling okay after the EN. However we ended up in hospital with an abscess and fistula and I still wonder if we had started the meds sooner we might have avoided it. My son has now been on it for almost a year and doing well with no side effects so far. I have read on a few posts here that some docs favour Methotrexate for teenage boys, which I can only assume (maybe wrongly) that there is less risk of lymphoma? Might be worth asking.

 

[Patricia56]

I recommend you discuss using methotrexate instead of 6-MP. My son is now 18 and if I were in your shoes I would also be very reluctant to start him on 6-MP although the risk of HSTCL is microscopic. Still, it's not microscopic if you're the one in however many million that gets it.

MTX is usually done by injection which is IM and I have been told is relatively painless. We are using MTX by pill but we started it when my son was on Humira so there was not as much push to use the injections.

 

[my little penguin]

DS has taken both 6-mp and Mtx .
Both have their potential risks .
My son had horrible side effects on Mtx .
He had no side effects on 6-mp from a quality of life stand point .
But it did go to his liver and never was enough to make him symptom free for crohn's.
Between pentasa , 6-mp and Mtx we wasted a year trying to get better to avoid using up the biologics .
Biologics he was feeling better in a few weeks back to normal in a few months,

There are a number of studies which say starting biologics within three months of dx for kids gives a much better outcome. Including reducing the risk of surgery in the future .
If the biologics don't work then you can always try Mtx or 6-mp by itself later since they can be stopped and started numerous times .


If the choice was 6-mp or Mtx
For DS I would still go with 6-mp first .
He was still sick but not the extreme fatigue /nausea /bruising we got with Mtx.

Fwiw DS had lots of skin issues ( rashes blisters scalp hands peeling) on remicade

 

[Tesscorm]

It really is so tough to make these choices for our children. My son has only used remicade as a medical treatment. I had similar thoughts as your GI and when I voiced them to my son's GI, his answer was that it didn't make sense to not use the 'best' med first. I've also read that remicade (and perhaps any biologic) has their best success rate when used soon after diagnosis and as a first treatment.

I know that the bottom up approach is to use the immunosuppressants and then biologics but, if a biologic doesn't work, then I don't know why the next step couldn't be an immunosuppressant. The drugs do work differently so it's not simply that a biologic is only a 'stronger' version of an immunosuppressant. Might be worth asking your GI if an 6MP or Mtx couldn't be used if/after a biologic does not work??

 

[AZMOM]

Every medication change is gut wrenching so I'm sure this is hard for you. Especially after what you have experienced personally. We did well on 6MP for a LONG LONG time with no side effects....our only purely 6MP related issue is that we couldn't get to a therapeutic level and maintain remission.

if you trust the doc, tell him what you are worried about. Did he explain how he will monitor blood levels? Other flags to help alleviate your concern? I know I'm reaching here but trying to grasp for something to help you feel better about moving forward.

If you are not 100%, there's not a darn thing wrong with a second opinion!!!!

J.

 

[DustyKat]

:ghug:

Crohn’s…:voodoo:…it is a disease that forces difficult and fearful decisions upon us and those fears shift as the disease shifts. Then before we know it we find ourselves wishing for things that we once dreaded! Ugh! You are so not alone jl. :heart:

I can’t add anything to the fab advice you have already been given.

Above all else good luck! I hope your lad continues to do well and whatever maintenance therapy you choose it works well and for a very, very long time.

Dusty. xxx

 

[positivemum]

we did 2 years of AZA and there may now be problems since coming off it. But I would have done it as he is so much better. A tough decision...

 

[Mehita]

These decisions are sooooo hard. It's one thing to make choices for yourself, but to make them for someone else is scary. I kept saying no to 6MP for a long time because I was scared. In particular, about teen boys and the HTSCL. What if DS was the 4 in 10,000 that got it? I would never be able to forgive myself. So, instead...

... he continued to vomit, continued to need pred, continued to have inflammation. He eventually built up scar tissue which led to a stricture. The structure required a small bowel resection. I finally agreed to 6MP after that. It turned out that 6MP didn't even work for him and he continued to flare and ended up with a fistula and abscess. Now he's on Remicade and doing well.

Please don't let YOUR (our!) fear prevent your kiddo from getting the treatment he needs. I let my fear get in the way and DS paid the price for it.

Let us know what you decide *hugs*.

 

[Farmwife]

:hug:
My five year old is on humira, Mtx and prednisone. I still have a hard time seeing that or reading or even telling people that.
I just think how could any mom put there kid on that stuff and be ok with it...........
Then she wakes up and uses the bathroom with no pain, threw out her pull ups, no need for med up her bum, she's gaining weight, she's growing taller
And then I remember why she's on it.:kiss:


Whatever your choice it will be the best for your child.

 

[kiny]

People have linked many studies about the risk of 6mp and infliximab. The risk of 6mp is known, because 6mp is used to stop rejection after an organ transplant, it was and sometimes still is used during infections, so there's lots of data. There is a considerable risk for skin cancer, but this can be avoided by not going in the sun or using protection, and when 6mp is stopped this risk goes down.

The risk of anti-tnf is really not very well known I feel, the big majority of the risks are when 6mp is combined with anti-TNF, but it's been suggested that this risk is not coming from anti-TNF but from the 6mp.

It's possible that anti-TNF is safer than 6mp because it only seems to affect recruited leukocytes, it's more specific than 6mp is , but there's jut no long-term studies since remicade is like 20 years old and imuran is much older.

There's even been a study that suggested that anti-TNF does not increase the risk of cancer at all, but this was followed up by lots of letters of people objecting to the study, etc.

It's worth noting that inflammation itself is a risk for cancer, so not treating the disease probably has risks too.

 

[jland25]

Thanks so much for all the feedback. I still feel like I've been run over by a truck, but am trying to move forward without letting my fears consume me. I have decided to take my son for a hem/onc consult to see if he is at any more risk than others given my health issues. And I have set up a second opinion consult for early May. It's so scary to make these decisions on behalf of the most precious person in the world to me. He really is the light of my life and I want to do right by him on all accounts.

It's heartening to see that others have grappled with some of these same issues. Makes me feel a little less crazy for agonizing over all of it.:smile:

 

[AZMOM]

I think that is an EXCELLENT plan. And oh yes, I think we are expert grapplers around this forum. :ghug: Just know that you are being a great advocate for your son, and you are not alone!!

J.

 

[Jane and Nick]

Hi Jl,
We are going through the same anxiety as you are. Nick is 12 and will be starting AZA at the end of the month. My husband is currently fighting lung cancer with brain mets, so you can understand our anxiety with starting a treatment that could lend itself to a increased chance of cancer. I have come to terms with it by trying to put things in perspective, I say to myself I let Nick take the school bus every day, he crosses the road, he plays sports he travels in a car all of these things come with there own risks. My husband NEVER smoked he was fit and ate a healthy diet, did not take any medications, yet he was one of the unlucky ones. Life is unpredictable and you have to deal with the cards you are dealt. Even if it SUCKS !
I feel your pain and think its great to cover all the options. Good luck, and I hope you find some peace with which ever decision you make.
Jane

 

[jland25]

Hi Jane,
So sorry for what you are going through. I appreciate your taking the time to reply and you're right, life comes with risks in all forms. I am doing my best to move forward with the sucky hand we've been dealt! I wish you all the best with your husband and as your son starts AZA.

Jen