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Livilou

Livilou

Joined
Apr 13, 2012
Messages
122
Location
Long Island NY
Hello! I hope everyone enjoyed the holidays and is well. I haven't posted recently,but I do check in to see how the kids are doing, and I know that many parents have been faced with some tough decisions. My heart goes out to all of you, it is so difficult sometimes. I have been knee-deep in college applications with Olivia, very stressful time! We also did the never ending "open-house" visits to several universities over the past 2 months. We are now waiting to hear about admissions. She runs to that mailbox everyday hoping for some good news! It is an exciting time, but Liv is still awaiting the next step in her CD treatment. If you remember, we were finally on board to restart biologics after MRE showed active CD (asymptomatic!). She is still on Entocort and LDN at this time. Recent labs showed that she is not immune to varicella (Zero titers), so we met with ID and decided she needed to be vaccinated before starting biologics, but MD's were worried about the steroids that she has been on for the past year. She was vaccinated on Dec 17th (MD made us wait until 1 week before she started the holiday break, just in case she actually got chicken pox). They were not sure how she would respond because of the steroids, so they made me fill a script for Valtrex...just in case she developed any pox. Well, on day 9 after inocculation, her arm swelled and she developed lesions (approx 5-6 pox) around the injection site! ID said this does sometimes happen, but because she was at risk, we start the valtrex ASAP to prevent a full blown occurence of CP. She did fine, now we have to recheck titers next week to see if she needs a second inocculation. Anyway, we went into NYC to meet with yet another GI from MT Sinai (at our new ped GI's request-these docs are very nervous to restart biologics because of the cancer) Well, this consult just confused me more because he advised us NOT to restart biologics on a child who has recently been treated for cancer...he said it was way too risky and if this were his child he would NOT even consider it!! He recommended Methotrexate or Stelara???? Stelara, another biologic. has a different mechanism (not an anti-TNF), but still not approved for CD and not studied in kids. Yes, Liv is 17, but still risky! In the meantime Liv has been ridiculously fatigued...CD flaring? Anemia? Cancer? She is a puzzle-turns out her TSH levels are skyrocketing and she has severe hypothyroidism! Well, now not sure if she is just requiring more Synthroid, but I would bet money that she prob is not absorbing the drug (absorbed in small intestine, where her disease is). We increased synthroid today, labs to follow and we need to do something soon. Should be hearing from GI Mon or Tues to see what next step is...not sure he is comfortable with the other MD's recommendation...he has never prescribed Stelara. And my head is constantly spinning! Liv is still going strong, attending school (even though she can barely get out of bed), working a part-time job and rehearsing for 2 different plays. Almost had her convinced to start EN with NGT, but when I showed her the video on Youtube, she decided she didn't want to try it just yet..she couldn't bare to watch, lol. Thanks for listening!!! Kim
 
Has she ever tried to drink any if the EN shakes ???
EO28 splash comes in three flavors - neocate will ship you a six pack for free for her to try them . Orang pineapple is not too bad.
There is also peptamen which has vanilla flavor- your Gi should have samples
Point being you only need a tube if you can't drink it- which you won't know unless you try it.
Even if she only drinks one a day it's better than nothing kwim.

Sorry the NYC Gi was confusing but I have heard good things about stelara -
Let me see if I can find a paper or two for you.
Hugs...,
 
Hide
Abstract / Article Extract
Background
In patients with Crohn's disease, the efficacy of ustekinumab, a human monoclonal antibody against interleukin-12 and interleukin-23, is unknown.

Methods
We evaluated ustekinumab in adults with moderate-to-severe Crohn's disease that was resistant to anti–tumor necrosis factor (TNF) treatment. During induction, 526 patients were randomly assigned to receive intravenous ustekinumab (at a dose of 1, 3, or 6 mg per kilogram of body weight) or placebo at week 0. During the maintenance phase, 145 patients who had a response to ustekinumab at 6 weeks underwent a second randomization to receive subcutaneous injections of ustekinumab (90 mg) or placebo at weeks 8 and 16. The primary end point was a clinical response at 6 weeks.

Results
The proportions of patients who reached the primary end point were 36.6%, 34.1%, and 39.7% for 1, 3, and 6 mg of ustekinumab per kilogram, respectively, as compared with 23.5% for placebo (P=0.005 for the comparison with the 6-mg group). The rate of clinical remission with the 6-mg dose did not differ significantly from the rate with placebo at 6 weeks. Maintenance therapy with ustekinumab, as compared with placebo, resulted in significantly increased rates of clinical remission (41.7% vs. 27.4%, P=0.03) and response (69.4% vs. 42.5%, P<0.001) at 22 weeks. Serious infections occurred in 7 patients (6 receiving ustekinumab) during induction and 11 patients (4 receiving ustekinumab) during maintenance. Basal-cell carcinoma developed in 1 patient receiving ustekinumab.

Conclusions
Patients with moderate-to-severe Crohn's disease that was resistant to TNF antagonists had an increased rate of response to induction with ustekinumab, as compared with placebo. Patients with an initial response to ustekinumab had significantly increased rates of response and remission with ustekinumab as maintenance therapy. (Funded by Janssen Research and Development; CERTIFI ClinicalTrials.gov number, NCT00771667.)
Click to expand...

http://www.nejm.org/doi/full/10.1056/NEJMoa1203572

Ustekinumab Induction and Maintenance Therapy in Refractory Crohn's Disease
William J. Sandborn, M.D., Christopher Gasink, M.D., Long-Long Gao, Ph.D., Marion A. Blank, Ph.D., Jewel Johanns, Ph.D., Cy…
View All
October 18, 2012
N Engl J Med 2012; 367:1519-1528

 
The rate of clinical remission with the 6-mg dose did not differ significantly from the rate with placebo at 6 weeks. Maintenance therapy with ustekinumab, as compared with placebo, resulted in significantly increased rates of clinical remission (41.7% vs. 27.4%, P=0.03) and response (69.4% vs. 42.5%, P<0.001) at 22 weeks.

So, less is more??
 
My understanding was although there was no difference at 6 weeks
Once maintence got moving things really improved ...
So it takes longer than 6 weeks to be truly effective I guess???
 
Livilou

Any new medications or vitamins that could interfere with thyroid hormone absorption? "Many commonly used drugs, such as bile acid sequestrants, ferrous sulphate, sucralfate, calcium carbonate, aluminium-containing antacids, phosphate binders, raloxifene and proton-pump inhibitors, have also been shown to interfere with the absorption of levothyroxine."

If not, then you are right that malabsorption is the likely cause. It sounds like the doctors are increasing the thyroxine dose until her TSH normalize now. Later when the intestinal inflammation settles down, and absorption is normalized, the doctors will need to lower her thyroxine dose to prevent too much thyroxine causing side effects.

Sounds like it's been really stressful, and the treatment decision is very difficult given her history and the doctors disagreement.

{{{Hugs}}} to both of you. Wishing her lots of college acceptances!
 
Nice to hear from you but so sorry it is such a stressful time. No advice just hugs. God bless her for championing on like she is. Any university would be lucky to have her!

Your house was damaged in the hurricane right? How are things going with that.

Much prayer and good lucking coming your way.
 
Thanks Everybody! Sorry for the very long narrative, but I was trying to squeeze everything in before having to leave to go to work! The past few weeks have been interesting...always feel more overwhelmed and skeptical when getting new opinions. I start second guessing things and feel like I'm back to where I started 15 months ago! Not sure what direction we are going in now...but I do know we have to start new meds very soon as we are running out of time. I am taking Liv to have her PPD done and of course, biologic treatment is on hold until the varicella issue is sorted out, but we have to start therapy, sooner than later. The scary thing is that both MD's that we consulted with at Mt. Sinai are involved with the drug studies, they tell you the risks and give you the stats..which don't always sound so terrifying when you think about them logically. BUT, than they add statements like " I would not treat my own child with this drug, if I was in the same situation" and they give you a certain look....can't really describe the look, but, they almost seem a bit horrified, as they eyeball your beautiful child...they shake their heads. I feel like they don't know what to say sometimes (we have consulted with at least 6 different GI's since Nov. 2011). The last GI at Mt. Sinai recommended treatment with either methotrexate or thalidomide...the latest guy does not agree with using thalidomide...but surprised me with Stelara. I'm not sure my insurance company will approve it off-label, but this doc says we can appeal and get them to approve it, considering my daughters circumstances. He also mentioned that it was not safe for anybody, treated for any type of carcinoma, to restart anti- TNF therapy for at least 5 years?? From what I have been reading about Stelara, it is also an immunosuppresive, biologic drug that does come with many risks as well. Just not sure what to do...scared silly of all these drugs. My son is due for his Remicade infusion this Friday...he is doing very well, says he forgets that he has CD sometimes. I am so grateful for the relief Remi has given him, yet still so terrified everytime he has to go in for his treatment. I guess the constant worry never ends for any of us.
@ MLP...thanks for posting the paper/stats on Stelara, it does seem like they are getting some very positive results! Also, I will ask our GI for samples of the Peptamen shakes. Liv does drink 1 Ensure/ Boost per day, but I know there are better absorbed drinks available specifically for CD kids. Ensure makes a clear, fruity beverage as well, we tried it, and Liv hated it. But the EO28 splash sound interesting...I will def. look into it.
@xmdmom...Liv has been taking her Synthroid together with her Entocort since Nov 2011, and her levels have been stable, we never had to adjust her dose. The only thing different has been the addition of the Valtrex for CP..she had to take that 3x/day, so she did gulp it down with her am meds; pretty sure it was fine to take with synthroid. Also, Liv would sometimes drink her Boost shake later in the am, on her way to school. Boost does have calcium. iron and other elements that may have interfered with absorption of levothyroxine?? I was not aware that she needed to wait 4 hours after taking the drug, to ingest those elements...so maybe that could be it? I hate to burst my own bubble, but I'm pretty positive she is not absorbing the drug because of disease activity, darn it! Hope your son is feeling better!!
@crohnsinct.....thanks for the hugs!!! How is O feeling? Hope she is well! We were very lucky during the storm...lost a few trees and part of the fence, but house was spared, Thank goodness! I have close friends that were not so fortunate. Love you guys...I needed to vent and it feels so good to write it down and share with people who truly understand xoxox Did I mention that I still hate this disease...hate it! Kim
 
Hey Kim...:hug::hug::hug:

Thank you for the update and I can only but wish the decisions you need to make were easier and clearer.

Have the docs offered up any opinion as to how successful or confident they are in the options they have given you? (Stelara aside).

So good to hear your son is doing well. :):):) Long may it continue!

Sending mega loads of love, luck and healing thoughts your way. :Karl:

Dusty. xxx
 
Hi Dusty! The docs continue to recommend methotrexate for Liv, but most of them agree that it probably will not keep disease in check if used alone. We were totally on-board with metho/remicade before this latest consultation, now I'm not sure what to think. I have to research more about Stelara in combination with methotrexate?? Our ped GI was also doing his homework as he knows NADA about this drug...we shall see. I'm thinking maybe we should at least start the metho for now until we figure out which biologic to use! In the meantime, we will be chasing numbers and titers for the next few weeks. So damn scary...I hate these choices! Kim
 
Sorry to hear you are having to make these difficult decisions! This has to be one of the hardest parts for me - taking responsibility for these drugs and then waiting to see if there are side effects. I have managed to put off the 6mp for 6 months so far, with nothing bad happening, but I am worried if I continue to leave it and things get worse, it will be my fault since the docs want him on it.
Sounds like it's worth starting the Methotrexate at least and then deciding which drug to combine it with. I haven't any experience with Metho, does it work quite quickly or not? Is it too risky to try that on it's own and see how she does?
 
Did the doctor who recommended stelara Ustekinumab tell you that he thought it had a lower risk of malignancy than other biologics? I know they have seen skin cancers in psoriasis patients on this drug. I'd want to know why he thinks it's better/safer than the other biologics.
 
Thinking of you Kim...:Karl:

I don't imagine it would hurt to start the Methotrexate on its own now and at least that way Liv has something to work with until the biologics can be sorted.

Dusty. xxx
 
Maybe out in left field here but you mention she is already drinking Boost. What about Mtx and a course of EN with the Boost? Remember O added a course of EN to her REmicade when the doc said it needed help. She came off the EN in July and has been doing great but the plan is if she takes a down turn to hop back on and do another dose. Plus, new research is saying you can get longer remission periods from EEN if you keep a maintenance dose of 1-2 shakes a day which you are already doing!

You are so sweet to remember and ask after O. She is doing very very well. Had a swim meet on Lon Gisland in December. Was fun visiting our old digs.
 
Hi Sascot! I hope that both your children are feeling well in the New Year! I remember making the decision to start Liv on 6mp...scary stuff. As scary as it was, she actually did very well on 6mp. it kept disease in check for almost 5 years with minimal side effects for Liv. I gave it to her at bedtime. I remember flipping out though when the pharmacist instructed me not to handle the med without gloves on..really?? And you want me to allow my baby to ingest it?!!!!
@Xmdmom....the MD did feel risks were lower, but yes, the risks are there. I believe it was basal cell carcinomas most frequently reported with Stelara. He spoke more about the anti-TNF mechanism being risky because of recent cancer diagnosis, and the fact that Liv still needs another round of radioactive iodine therapy/PET scan to make sure there are no residual thyroid tissue cells hanging around...that could possible cause recurrence of disease in adjacent lymph nodes. Also why it is so important at this time to suppress TSH levels..residual tissue can become cancerous very easily. Adding an anti-TNF at this time probably is a bit risky-need to confirm cancer is completely gone with a negative follow-up PET-scan. (doing this sometime between Feb and March).
@Crohnsinct....it is a battle of the wits to get Liv to drink 1-2 shakes/day, I think she is sick of them. She prob would not agree to EEN, which is why I was pushing for NGT feeds, I know she will not comply. I have to tread carefully, you know how these teens can be...she knows it all and I am always overreacting, lol! Glad O is doing well and swimming up a storm, makes me happy! Kim
 
Hello Everyone! Haven't been on for awhile...things have been crazy here. Well, Liv made it through the chicken pox ordeal..repeat titres showed that she had immunity after the first innoculation (although she needed to be treated with Valtrex for 7-10 days because of active lesions). In the past month or so, Liv has been having more daily stools 10-12 times per day, 2 of them with bright red blood. We are awaiting approval for Stelara and continue on LDN and Entocort. In the past 2 weeks she has also had nausea,abdominal tenderness (around the umbilicus) and has been ridculously fatigued, can't get her out of bed for school...missing alot of school these days. No fever, no joint pain and labs were normal except for Hgb/Hct, she is anemic. Fecal Calprotectin still elevated, but down to 500's from almost 1000 2 months ago. GI suggested we send stool to check for C diff infection....BINGO!!! This poor kid cannot catch a break!! Now she is on oral Vancomycin for 10 days to treat this beast,(does not do well with Flagyl). I haven't seen her this sick for a long time. Also have her on Florastor to help with c diff toxins. She is so much better after 5 days, finally has some appetite (she lost 5 lbs in a week-down to 102lbs)
My house reeks of bleach, I have been spraying bathrooms and all surfaces like a maniac. My son is on Remicade and I'm terrified he will pick up the c diff. GI says disinfecting and good handwashing with plain soap/water will kill spores. This infection used to be considered nosocomial, meaning it is very prevalent in hospitals/nursing homes (it still is), however, it is in the community as well, and becoming very resistant to treatment. Of course, people with IBD are at higher risk of getting infection, Liv has not been on antibiotics recently (more than a year), and the only exposure to a hospital was a few months back when she had her scope...I guess she could have picked it up than. It has been exhausting trying to stay on top of this...vanco 4x/day alternating with florastor, having to wake her in the middle of night to give her doses, so they are spaced properly.
Thanks for letting me vent...just frustrated and exhausted, it never ends. Kim
 
Must be very stressful. Hope the meds kick in quickly - glad to hear she is improving. All that cleaning can't be much fun!!
 
Thanks so much, it just feels good to vent to those who understand!
Hi Sascot! I haven't been on, sorry, I usually try to check on everyone's kids, but it has
been crazy! Has Andrew started on the 6MP, and how is he doing?? I hope all is well.
Hi Jacqui! I am so happy that your son is doing well with the shakes...what a trooper, my
daughter gives me a hard time to drink 2 per day, even now when she is feeling crappy!
Hugs and support to everyone! xoxo Kim
 
Hi, yes Andrew started the 6mp a week ago and I am just waiting for the phone call today to see how his blood test was yesterday. If ok, we increase by 25mg until the next week. So far so good! Hope things are still getting better.
 
Well he has his moments still, only drank 2 yesterday from 7am - 6pm. He was at a choir event and even though I had already arranged everything with his teacher to have her carry them and him to have his thermos except for the times they were on stage. He thought it was too much of a hassle. So big long discussion about responsibility and this is no different then his other meds and it is really not an option. So big ski race today for all junior highs and he packed his bag full of them, hopefully he drinks them. But I was so frustrated with him yesterday I was about ready to pull my hair out.
 

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