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AZMOM- questions for you


Fri, April 23, 2010 10:16 AM

Hi-

I have seen you say that your daughter had a very tough time getting off Prednisone and that she is also on 6-MP now.

Can you tell me more about why she had such a  hard time getting off Pred. and how long she was on 6-MP before she was fully off Pred?

My dd is on Pred and 6-mp so I am wondering more about that>

Thanks so much

FPO mygirlrj
Joined Oct 22, 2009

Sun, May 16, 2010 12:00 AM

 Reply posted for AZMOM.

Victor was off Pred 4 April and started 6MP 24 Feb...it was great no problems...had labs bi-weekly and w/added iron his White and Red blood counts are on track. He had a bout of diarrhea Wed...Sat he ate Popcorn and Sunday bloody stools...so not sure if popcorn irritated or was just bad timing. We have decided no more popcorn scales for now. Sorry...what I wanted to say is the time between off Pred and 3mos needed for 6mp may be the cause of this flare if it is a flare...but no side effects or hair loss. He is on 25mg of 6mp and at that low dosage...chances for side effects are very low. Good Luck! Marcella

FPO victorsmom
Joined Feb 17, 2010

Fri, April 23, 2010 5:12 PM

 Reply posted for AZMOM.

okay after I wrote that novel, I realized I could have just told you it took almost 6 months 


Claire's Mom

FPO azmom
Joined Jul 20, 2009

Fri, April 23, 2010 5:10 PM

 Reply posted for AZMOM.

this is actually part 2 - sorry!


I know there are strong opinions about what works for kids on this forum.  I wish that diet alone could work for us.  We did do the low fiber/low residue diet during the first months of her illness.  And after she was completely off the prednisone and doing well, we reintroduced a lot of her old favorites (broccoli, beans, raw veggies, popcorn, etc) and she has done very well.  The only thing she won't eat (this will sound weird) is chicken.  She'll look at me like she's 40 (and she'll be 7 tomorrow) and say very matter-of-factly "chicken hurts my stomach".  Other than that, she eats everything she used to and does really well.  

I was really skeptical that the 6MP would work but I am glad we gave it time.  She has no nausea, hasn't had diarrhea to speak of, we have seen no blood, her energy level is good overall, the prednisone weight is gone now and no, she hasn't lost any hair either.  She has been very healthy in terms of other illnesses - has avoided all of her "healthy" big brother's viruses.  We had one random day of fevers a couple of weeks ago and her counts were a little off but she bounced right back from that with no other drama.  So we are counting our blessings.  

I probably gave you way too much info but I have seen your posts and know you have had your hands full.  Your daughter is in our prayers.  If you ever want to email me directly, you can email me at julie@h4ki.org.  

Let me know how's she's doing when you get a chance.  I know that desparate "someone help me" feeling all too well.

Take care,

Claire's Mom

FPO azmom
Joined Jul 20, 2009

Fri, April 23, 2010 5:10 PM

 Reply posted for mygirlrj.

Hi - Well they started IV steroids and 6MP during her hospitalization in June.  She was still have bloody stools when we left the hospital but felt much better and was improving (like 2 or 3 a day vs. 15).  She was on 40 mg a day.  We started trying to wean 6 weeks later but whenever we would get to 30mg, the bleeding, joint pain, diarrhea etc, etc, etc started again and we went back to 35 mg.  Checked the metabolite for the 6MP at about 12 weeks and found that the 6MP wasn't at therapeutic levels and we had to give it more time.  Added Pentasa but then her liver enzymes shot through the roof so we had to drop the Pentasa.  Finally, we started weaning steroids again at about 5 months on 40 and 35 mg) of prednisone a day.  It took us a total of 6 weeks to completely wean her and when we did, she did fine.....no recurrence of symptoms.  Once we were off the prednisone completely we got to drop the Prilosec, Iron and another supplement that is escaping me right now.


The original thought was Remicade because of the severity of her illness.  However, she was dx with arthritis at 3 and had been on Enbrel in total remission for a couple of years.  She had a pretty rare neuro side effect on the Enbrel and we had to stop it.  It was shortly after we stopped the Enbrel that she got so dramatically ill and was hospitalized and diagnosed with Crohns.  The thought is that the Enbrel masked it but couldn't keep it in remission since that's not what it was designed to treat.  So all TNF blockers (Remicade, Humira, etc) are no longer choices for us.   

Continued,

FPO azmom
Joined Jul 20, 2009

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