Update on Violet, Good News

[imaboveitall]

Finally got pillcam results at follow up, and they are great!
Doc was happily surprised to find that the small bowel was unremarkable throughout, showed healed areas from last year's disaster in there and is overall much improved.

Why the areas of disease in the stomach seen at scopes, then?
No good answers as to why, but with such improvement in the small bowel, and the colon clear as usual, he postulated that the gastric inflammation may have been transient? Or from Imuran. If it is disease, it is "mild to moderate" and with the rest of the gut in good shape, he is agreed to D/C REMICADE!! :ylol:

I canceled all her infusion appts straightaway.

Case conf was yesterday, waiting to hear the input from the triad of big brains. Will update with what they say when I hear back.

 

[Jmrogers4]

Great News, Hope the areas in the stomach were just a fluke and the good health continues on and on and on.....

 

[Tesscorm]

:dusty: :dusty: Wow, GREAT news!! :dusty: :dusty:

I am so glad to hear that all is looking well!! I can imagine what a relief this is for you!

But, I'm confused about something... isn't he concerned about discontinuing remicade and then V developing antibodies? This is exactly the treatment course my aunt had (imuran and remi, then remi cancelled) and she has been totally fine for years and years BUT developing antibodies seems like such a concern, I don't understand why my aunt's and V's GIs seem willing to risk it??? Coincidentally, was speaking with a friend of a friend, whose 11 year old son has UC and his GI is also planning on stopping remicade asap once the boy has reached remission???

As if this disease isn't confusing enough?!?!?!? I would love to take Stephen off remicade (as I'm sure all parents would love to do!) but am scared, if I do, he'll develop antibodies and be unable to return to it if necessary!

 

[Maya142]

That has been our worry too. My older daughter wants to discontinue Humira which she takes for arthritis, because she feels so good. Her rheumatologist is VERY against it because even though it's not as likely with as Remicade, it's still quite likely that she'll build antibodies won't be able to come back to it. What we've been told is that once you go off Remicade, you're done with it forever because of the likelihood of a severe reaction if you retry it.

 

[imaboveitall]

Re: antibody development, he is more leaning towards Cimzia if we need to reintroduce a biologic, or Humira as he said they now have (did not have when she trialed it) a way to measure both antibodies to/therapeutic levels of Humira.

I think in V's case, her being on Remicade 5 mos and then landing in hosp, the consensus is it was a fail for her and Imuran is what is keeping her stable. Very anxious to hear what Sorrentino and the pedi GI from Dartmouth say.

 

[Maya142]

My younger daughter is trying Humira again (it stopped working two years ago but we didn't test for antibodies then) and is just beginning to feel better (fingers crossed!). Just wanted to let you know in case you guys have to do the same!

 

[imaboveitall]

Thanks Maya, he said Humira may've failed her due to never getting to thera levels, and now that we have a way to measure that, it'd be worth trying again if we need to go dual again.
I'm pretty sure it is Imuran keeping her well; she did have a long/high dose course of pred as well to GET her stable, and now hoping Imuran alone can keep her there.
When on just Remicade and low dose pred she stayed sick and got worse to the point of hospitalization.

 

[Tesscorm]

Makes sense... it doesn't seem like remi was doing a great job at maintaining remission for her. Glad GI is now thinking that, perhaps, the humira didn't actually fail at all - and you've got some solid back-up plans on the sidelines.

In any case, all is looking good, she feels good and you've got some relief from the worry!! Sometimes we've all got to just enjoy and appreciate the good times and not borrow trouble by worrying about 'what ifs'. :hug:

I'll be interested in hearing what the top dogs say!

 

[Maya142]

So glad things are looking better! Do let us know what the specialists say, I always like to hear about new treatment ideas (we need multiple back-up plans where M is concerned!).

 

[kimmidwife]

So very glad to hear good news!!!!

 

[pink&green]

Yeah for good news..

 

[imaboveitall]

You guys will get a kick out of this. :yrolleyes:

The bigdog Sorrentino advised to CONTINUE Remicade, d/c Imuran.

Reasoning:
Less hassle, (WTF??) and less long term risks. I swear to God, those were the reasons he gave.

Less hassle? To go to a hosp than take a pill?
Less risky? When Remicade's risks in the pedi population are unknown? Versus Imuran which is an old drug used for decades in kids and the risks are well known?

I told our doc I now believe in the conspiracy of big pharma paying docs (esp famous ones like him) to push their drugs.
Needless to say his advice shall not be followed and we are going with the plan our GI made with us and we were all happy with.

 

[polly13]

Great to hear she is doing well

 

[Tesscorm]

Thanks for posting! While not agreeing or disagreeing with Sorrentino, his reasons truly suck! :arghmatey_ani: And, make no sense to anyone with any kind of knowledge about these meds!

Did you ask him why infusions would be more 'convenient' than pills at home? If his concern/argument was compliance, I can understand that. S's GI also strongly 'encouraged' a biologic (opposed to LDN and immunosuppressants), specifically remicade and, then,when I brought humira into the conversation, he couldn't really say no to humira but his argument was that compliancy was better controlled - ie no errors in injections, no 'one day late', one week forgotten, etc. But, there's no argument to be made for 'convenience'?!?!

And, I'm curious how he justified less risk?? I would, of course, for S's sake, love this to be true but???

Sorry the appointment was a disappointment but, I'm sure it's reassured you of the Guru's value! And I'm glad you have a plan you are already happy and comfortable with!! :hug:

 

[imaboveitall]

My suspicion of what he meant by "less hassle" is indeed a compliance related thing, Tess. As to the risk thing,"immunomodulators carry more risk over the long term" was what he said. Whattheeff-ever. I say he's in big pharma's pocket.
Violet has never missed a single dose of any of her many drugs. I can count on one hand the times a dose was taken a few hours late and never through "noncompliance".

He maybe is of the mindset that with the infusion, you KNOW the kid is getting the full dose and on time.

Oh get this. If we had chosen to stay on Remicade, the advice was to UP THE DOSE from 350mg to 400mg because "thousands of dollars of drug are being wasted if she doesn't get the whole vial".

You can imagine my response to that. :ylol:

 

[Tesscorm]

Wow! It is so disappointing to believe that doctors can be biased to any degree. I suppose I've tried to stay in a Pollyanna world where every doc would do only what's best for the patients but, as you know, I've had my doubts and questions as well. But, I trust your judgement and it is disappointing that you encountered this attitude.

The comment about wasted $$ is horrible!!! The fact that this would even be a consideration for him would lose him much credibility in my mind. No argument that his knowledge and experience may be second to none, however, personally, I would always be left with doubts as to his judgement after a recommendation like that!

You're lucky that you have the Guru looking after V! :ghug:

But, having said all this... and taking Sorrentino out of the mix... Do consider that if you are going to drop one med, if you drop remicade, you will likely not be able to go back to it. If you were to drop imuran, you would still have the option to return to it, if necessary. I know there is a possibility that remicade is not helping her anyway but, would it be possible to test for remi levels? To, at least, know for certain that she is maintaining therapeutic levels? I know I've just recently asked you this specific question but am just so forgetful lately :ybatty: (old age?? :lol, what dose of remi is she on and what frequency? If testing showed no or low levels of remi, is there still an option to increase the dose or frequency?

In any case, certainly not trying at all to convince you to change plans... , but just playing a quasi devil's advocate and making sure you've crossed all 't's... :ghug:

 

[my little penguin]

I think a lot of teenagers have drug compliance issues ( in terms of pills) even with parents presuring .
Plus the staff gets to look at weigh measure etc the patient regularly.

The bigger question is not whether she is compliant now with pills but is she compliant without parental input prompting etc...

You know your kid best and where their weakness are.

I have one non ibder who constantly forgets meds .
My Ibd kiddo is still working on tracking his own meds slowly.
He is only ten so he still needs supervision. And prompting.

 

[Tesscorm]

I may not have agreed with all S's GI has said, but I do believe compliancy was a concern of his. But, like you said, MLP, kids are different. Even parents - I remember a follow-up when S was still on EN only, GI asked us how often, how much and when I told him, he was very surprised! Of course, then I worried I'd misunderstood his instructions and asked. He said most of the time, the EN instructions, aren't followed through! That really surprised me - how can a parent not follow through and if it's the child who is refusing, how can they not be calling the GI asking what other treatment there is?? Oh well...

I don't know how often immunosuppressants are taken, but S is obviously fine complying with the infusions and I think he's 'okay' with supplements and shakes but I know, without a doubt, it would be a very big adjustment/challenge for him to follow a schedule where he had to take pills on a specific schedule (ie every few hours).

But, I believe (hope ) that we have some influence on that... if we have always been very diligent at keeping them compliant, I do think that the importance of compliance rubs off on them.

 

[imaboveitall]

Tess, we had HACA and trough levels done when on Remicade and she was neg for antibodies and at perfect thera range. It just didn't work for her.
If she must return to a biologic it'll be Humira or Cimzia.

Even if potential noncompliance was the impetus behind that advice, in this case Remicade was clearly a fail so I cannot believe he was coming from a place of her best interest. It was the most ridiculous input I've had from any of her many physicians, barring the neurologist who said her knee collapsing may be a stress manifestation. :ybatty:

 

[Brian'sMom]

If remicade is just not working, what makes you think Humira or Cimzia will? Humira faded out for us... and we followed with Cimzia, it has done nothing. If you've followed us... it's obvious it's done zero. Our gi is having us stay on it till surgery. Doesn't want us to be on nothing while they figure out what to do next. Hard giving my boy 8 shots a month (4 cimzia and 4 mtx) when it's not helping. So i understand your thoughts. But once tnf is out...not much else left. But if if doesn't work... nothing to do about that anyways. Its a frustrating world having to try each one for such a long time to see if it kicks in. I don't think doctor's prescribe it to get pay or such... i hope not. I just think its considered the best in the crohns fight. Crohns is so tricky. Seems nothing works for a long time.

 

[Maya142]

That's not necessarily true. My daughter has been on Enbrel (anti-TNF for Juvenile arthritis), Humira and Remicade. Enbrel worked for a couple of months, Humira for about two years and then Remicade for 6 months or so. She's back on Humira is feeling better. Humira seems to be the only one that helps a LOT, the others just helped a little.
But I agree, there definitely need to be more options. We would try Stelara next if Humira fails because then it'll be clear that they really don't help her much.

 

[Brian'sMom]

Good to hear Maya. Not sure tnf will work again in our case, but glad to know its different in others.

 

[imaboveitall]

BriansMom, I know, I don't think Humira will do anything if we retrial it. She was already on it 5 mos and it did nothing. She just got worse.
He mentioned TPN if she fails again. That's a temporary measure too.
I know what you mean about giving the shots and getting no results. It feels so effed up.

 

[Tesscorm]

With those HACA results, it really is hard to understand why he would continue to recommend remicade. The worry of crohns is hard enough without having the added concern about whether a doctor has or has not truly put the 'whole' patient's best interest foremost. By 'whole', I mean that consideration should be made for age, past experience, etc. I sometimes wonder if the top dogs are not more likely to go with a cookie-cutter recommendation only because they have so many more serious/complicated patients waiting in the wings. I've sometimes felt this about S's GI... for patients having serious issues or needing surgery, his GI would be one of the best around (and I would be incredibly grateful for his knowledge, skill), however, as far as prevention/maintenance - I have wonder if the quick jump to the biologics isn't because it's quick and easy, puts a 'remission' checkmark next to the patient and his focus can remain on the more serious/demanding issues. Of course, remission is the goal but, perhaps, there would have been other ways to get there???

In any case, from all recent results, V is doing well!! Now that's she's reached this point, it seems the imuran needs only to 'maintain' and, hopefully, it will continue for a long time! And, of course, knowing that the top dogs weren't able to give you advice any better than you've received from the guru has to be reassuring for you as well.

Enjoy!!!! :ghug: :ghug:

 

[QueenGothel]

Hey! Good News... Wine for everyone!