6 MP or PEN?

[CarolinAlaska]

Our Gi doc for Jae wants Jae to start 6 MP. I'm reading that 87 % of those who go off 6 MP relapse. 6 MP is a category D for pregnancy. I'm just thinking, that if my dd wants to get pregnant in 10 years and she's on this med, she'll have to go off, then will we be looking at a 87% relapse rate? PEN gives a 87% continuation to remission, but no PEN gives a 49% relapse rate... PEN could be continued during pregnancy...

Yes, I realize chances are that Jae won't be on same med in 10 years, but still wondering if she would do better not to ever start the heavy drugs...

It might mean a mickey button. Wouldn't long term PEN for remission be more safe than an immumodulator or biologic? Of course, our GI actually wants her to do both :yrolleyes:

 

[Tesscorm]

Just to make sure... PEN is partial EN? So EN as a supplement with a regular diet?

 

[rollinstone]

I think the relapse rate for Aza/6mp is only that high if you come off it and go onto nothing else as a maintenance drug/therapy, sorry I can't offer any advice though

 

[CarolinAlaska]

I'm referring going from EEN (8 weeks) to partial EN (PEN = EN with oral foods) without 6MP for maintenance as opposed to PEN with 6MP.

 

[CarolinAlaska]

The first case would be PEN for maintenance, the second PEN would be for supplementation.

 

[DustyKat]

PEN would be safer, in terms of side effects, if it continues to work on its own but I imagine the GI's concern is that it won't and he/she wants to shut the gate before the horse bolts, so to speak.

This is a publication my daughter was given by the GI. It is a very informative read about IBD and pregnancy, including medications...

http://www.drfalkpharma.de/uploads/tx_tocfpshoperw/S82e_12-1-09.pdf

Dusty. xxx

 

[CarolinAlaska]

Great!
Thanks Dusty!

 

[Twiggy930]

It is my understanding that some women stay on azathioprine/6MP while pregnant. Just throwing another possibility out there.

There is some info on this subject on the CCFA website.

http://www.ccfa.org/resources/pregnancy-and-ibd.html

I hate thinking about how this disease might limit our kids choices later on. :ymad:

 

[CarolinAlaska]

Me too Twiggy

 

[Twiggy930]

I think the best thing to do to ensure that your daughter has the choice to become pregnant in the future would be to do everything possible to keep her disease as under control as possible for as long as possible. I think the bigger limiting factor would be if she ends up having surgeries as that would have a greater chance of limiting her fertility.

I was under the impression that PEN does not have the same rate of maintaining remission as 6MP/azathioprine. Is there a study showing otherwise?

 

[my little penguin]

Carol-
I understand your concern with 6-mp
And what may happen in 10 years.
There may be new drugs in 10 years .. Many are in the pipeline now.
But given your child was dx as a child and had growth failure
These two things alone without her other test results puts her in the severe/ moderate
Category for Ibd.
PEN working alone does not have a very good success rate in those with moderate disease.
Your Gi really wants to keep things under control.
If you go under PEN only there is a risk that she will probably
Flare and the odds of EEN working the second time is very low.
PEN when used in conjunction with another maintence meds
Does increase odds of the remission rate .

6-mp has risks but so does Ibd . A Mickey button on a kid with Ibd also has risks.
If your child needs it due to other food issues is one thing
But any surgery on the intestine or Gi tract runs the risk of crohn's flaring in that area.
Especially since crohn's in kids tends to spread over the ten years from dx.
Which is probably why your Gi is being a little aggressive but following
Standard step up therapy .
Aggressive is top down therapy .
But as one Gi we saw said
There is no right or wrong path just whatever
Gets your child to stay in remission.

I can say for DS PEN with 6-mp was not enough
So I am a little jaded .

I think you really need to discuss with your Gi
What she thinks will happen if your dd goes on pen
And what would be needed if pen alone didn't work .

Again just supplying mommy opinion
Not a doc so discuss with yours

 

[CarolinAlaska]

Not that I know of. I'm not sure they have been done head to head. I think what has got my attention is the statistic that there is an 87% failure to remain in remission if you stop 6MP, and it makes me fear starting it, as though it would set her up for failure. KWIM?

 

[my little penguin]

remission rate with PEN was lower than with TEN (15% v 42%; p=0.035). Although PCDAI fell in both groups (p=0.001 for both), the reduction was greater with TEN (p=0.005). Moreover, the fall in PCDAI with PEN was due to symptomatic and nutritional benefits. With both treatments there were significant improvements in relation to abdominal pain, “sense of wellbeing”, and nutritional status. However, only TEN led to a reduction in diarrhoea (p=0.02), an increase in haemoglobin and albumin, and a fall in platelets and ESR.
Conclusions
TEN suppresses inflammation in active Crohn's disease but PEN does not. This suggests that long term nutritional supplementation, although beneficial to some patients, is unlikely to suppress inflammation and so prevent disease relapse.

From:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856067/

 

[Tesscorm]

Ok, I just wanted to be sure... PEN is what Stephen has done for maintenance since his diagnosis in May 2011. He did six weeks of EEN and has done only PEN since then (his only medication, until the recent remicade, has been Nexium on the days he did PEN).

I'm not recommending one method or the other... just sharing Stephen's experience with PEN:

- May 2011. diagnosed with patchy inflammation in his stomach, duodenum, colon and TI. Oct. 2011 MRE showed inflammation only in his jejenum (small patch) and TI (20-30 cm). May 2012 and Oct. 2012 MREs showed continued inflammation in his TI (same 20-30 cm). All MREs showed some thickening but not sure if caused by inflammation or scarring (although Oct. 2012 mentioned 'fixed bowel loops' - possible scarring??).
- EEN immediately took Stephen into clinical remission (literally 2-3 weeks and he was back to school, hockey, etc.) and EEN/PEN eliminated all inflammation except in his TI. He has had no consistent symptoms since, only random days where he has had diarrhea or constipation or feels 'off' or pain with running, etc. (but all shortlived with no med intervention).
- I am convinced the PEN kept a lid on the progression of his crohns. HOWEVER, it did not eliminate all the inflammation. While he has not had a flare, the continued inflammation may be silently laying the groundwork for future problems even without a flare.
- While on PEN Stephen has gained 40 lbs (including regaining what he'd lost before diagnosis) and, aside from crohns, is probably the healthiest (nutrition-wise) he's ever been (picky eater :yrolleyes.

I wouldn't change what we did by utilizing PEN and delaying meds. However, knowing NOW that PEN was able to control progression of the disease, I will always regret not having pushed more to try 5-ASAs or LDN... while neither has well established success rates (for different reasons), both are relatively safe and could have been tried with PEN. Who knows if the course of treatment today would be different??? Perhaps we wouldn't have needed remicade... it certainly wouldn't be worse given that we NOW know things didn't worsen on PEN alone. But, hindsight is 20/20!!

Moving to remicade was difficult because NOTHING had changed (except a new GI's opinion) - Stephen feels good, looks good, labs are the best ever! :yfaint: But, there is no doubt the inflammation that is there will one day cause more problems... in 6 months or 6 years???

I've read enough stories here to know that looking good, feeling good and having great labs today doesn't mean all won't change next week or next year! :ack:

I wholeheartedly recommend continuing with PEN! Even on remi, Stephen may continue (some days he wants to, others not??? but still is for now). I believe taking in all the vitamins/minerals your body needs can only help when your body needs to control or prevent a flare (certainly won't hurt).

To do PEN without meds??? IDK, I don't believe it's hurt Stephen to wait the year and a half to start meds but he also responded very well to EEN immediately - I'm not sure that Jae has responded as well or as quickly as Stephen did. Perhaps that is an indication of the strength/severity of her crohns activity compared to Stephen's (but, I don't really know!!)????

Not sure if I've helped at all but maybe just given a bit more food for thought... :ghug:

 

[CarolinAlaska]

Jae has gotten much better since changing to Pentamen JR by NG tube (within 2 weeks). She just didn't do much better on Ensure. Also, I think Jae has had this disease many years (although biopsies don't confirm that - but the worst of her disease is in the small bowel where biopsies are not possible:smile.