Feeling a little vindicated

[Dexky]

My son had scopes today. The preliminary reports (what doc saw, I have learned to be skeptical of this) indicate no upper GI involvement but ongoing "chronic yet not acute" infl in the colon. He started mumbling about this new drug that is similar to pred but is targeted to the colon. He knows my hesitation about Mtx. I asked if it was Uceris. He said yes. So, pending biopsy results, it seems we'll be adding Uceris instead of mtx to the mix. Somehow with AZMOM's enthusiasm about it, I feel much better and somewhat vindicated for balking starting mtx!

So, knock on wood and pray, nothing in those biopsies will be a problem!

Also, no mention of visible eosinophils. So for now at least, we'll continue with gluten-free.

His verisce in his esophagus (psc related) is still there but not noticeably changed from last spring so…well it would be too much to ask for it to just go away! We'll take the status quo!!

All in all, a good day I think! Again, see my remarks about preliminary reports and biopsies...

 

[Mehita]

Yeah, sometimes status quo isn't so bad, is it? Hope the biopsies are boring and lacking excitement as well.

When does he start Uceris?

 

[Farmwife]

That's good about Uceris.
I'm thinking of asking for this for Grace if we can't just use LDN.
Keep us posted.

 

[Dexky]

Thanks FW for not making me feel stupid in public. The doc did not mention eosinophils but did not note any irritation that suggested allergic response as he did at last year's scopes!

 

[Farmwife]

Thanks FW for not making me feel stupid in public. The doc did not mention eosinophils but did not note any irritation that suggested allergic response as he did at last year's scopes!

Let the record show. :ymad:
I pm'ed Mr. Dexky and asked the question in a private setting to spare him the embracement of spreading false information on a well respected (kind of:yfaint international forum.
:lol2:

 

[Dexky]

OK, OK…I'll let you slide on your spelling Now, let's all embrace and get on with it!!

 

[Farmwife]

I hate spellcheck. :ymad:
How in the world can you pick the right word when you can't spell it in the first place:yfaint:

Now if you don't mind.....................
I'm going to go look at Grace's biopsy pictures to see if I can find her eosinophil.:ybatty:

:ylol::lol2::ylol::lol2:

 

[my little penguin]

I am confused.
I understand not wanting to use Mtx .
I understand not wanting pred.
But uceris is still a steriod which can be used to squash the inflammation but
I am not seeing how it would be a good maintenance option.
Since it has less side effects than pred but still has steriod side effects .

Maybe I am missing something.
If it just a short term boost needed instead of pred than it sounds good.

Glad the scope went well.

 

[Jmrogers4]

Glad for status quo, hope nothing more on biopsies and uceris does the trick

 

[DustyKat]

Good to hear the scopes went well Dex.

I'm with mlp, what is your take on the Uceris?...

Long term or to kick the chronic crap in the guts and then lose it?

Dusty. xxx

 

[Dexky]

He didn't really give a time frame for Uceris. I assume it's a bridge med to try to clean up the colon. I also need to ask how we're gonna know since his inf markers have been in range for at least the last six months. Preloading his Humira with 20 mg pred weekly has completely quashed the reactions that led to talk of adding Mtx. Maybe I'm kidding myself and adding mtx would be a better option.

If he does have antibodies to the Humira, is that situation likely to get worse? Sometimes I miss the most obvious questions. I just don't think I really want to know!

 

[my little penguin]

We were told for DS and remicade
If he was reacting then the odds of the reactions getting worse were pretty much a given.
We were also told giving high dose pred before each infusion was not a practical
Long term solution since the whole purpose of biologics was to avoid the long term known damage of pred.
They also told us that they would not be able to predict how fast his reactions would progress.
Please bear in mind his reactions involved the mouth and throat so things could have gotten bad very quickly since his body has already proven the ability to have anaphylaxis to food.
Also his body managed to react to remicade while on 4mg of iv solumedrol plus Benadryl plus Zyrtec

 

[Tesscorm]

So glad to hear of the good scope results!

Ah, there are always more questions... :ybatty: but I hope all answers will be good ones!!

 

[Clash]

Glad for the status quo!

I have a couple of questions, is Uceris the same as Entocort just made by a different pharmco? Just wondering since they both say budesonide.

Is it possible for him to be on the Uceris and have the 20mg of pred each Humira dose, is that too much steroid or will the Uceris take over instead of giving the Pred?

 

[DustyKat]

As far as I am aware Entocort is primarily for Crohn's and targets both the small and large bowel. Uceris is for UC and targets the large bowel. I imagine there is room for overlap when CD is located in the large bowel.

I personally think that Uceris and bolus doses of Pred would be compatible, I think however it may enhance the steroidal side effect??

Dusty. xxx

 

[Dexky]

We did ask about continuing pred if we start Uceris and doc said yes. Clash, doc may intend EJ to use Entocort. When I mentioned Uceris he did say yes but then mentioned budesonide. He's very soft spoken so sometimes his intent isn't crystal clear.

MLP, he did have some itchy rash within his first few doses of Humira. We had good luck with Benadryl for nearly two years. I don't know, just not ready to give up on Humira.

 

[DustyKat]

Dex, Uceris is Budesonide. It is formulated to target the large bowel only. So much like the 5ASA's, same formulation different modes of action.

 

[Dexky]

I know but when I mentioned Uceris he mumbled a little and then he said busenodide. I don't suppose I have a preference if it'll work. Again, this is all a little premature anyway until we get the bio report.

 

[DustyKat]

Ah okay, I wasn't sure from what you wrote. Technically it is Budesonide so he would right in calling Uceris by its generic (medical) name.

 

[Dexky]

I'm not sure either Dusty. Isn't that obvious?

 

[Clash]

Ahh...okay that seems more sensible, I was reading that the Pred was for the allergic reaction but then I was worried it might have to be dropped when starting the budesonide. And as much as I hope C can stay on Remicade I figured you were probably the same with the Humira and I was scared dropping pred may mess that up!

Sounds like y'all have a plan!! Onwards, Upwards and moving forward from here!:thumright:

 

[DustyKat]

I'm not sure either Dusty. Isn't that obvious?

Ummmm, yes. :ybiggrin:

 

[Dexky]

This is the script…


Uceris 9 mg tablet, extended release; 1 (one) tablet by mouth daily; Dispense: 30 tablets; Refills: 11; Prescription Type: Standard; (Surescripts Message ID <38b398fc0e048fa3f1ea6553030a1b59>, Result = <success>)

11 refills!!?? Sounds long term to me!

 

[my little penguin]

some docs just automatically write scripts for a year.
ours does.
less scripts that way.

 

[Maree.]

There is no way our insurance company would accept twelve months scripts.
I've been told 90 days is about the max they'll accept before they accept, before they require another checkup.

 

[Farmwife]

Dexky that's the way we understood it from the GI. It was going to be used as a maintenance type drug.

 

[Dexky]

some docs just automatically write scripts for a year.
ours does.
less scripts that way.

If you have a co-pay, do you only have to pay for the initial script or do you pay for each refill? I've never had a co-pay but will have $50 max co-pay starting next Jan.. I think there's a max out of pocket too. I guess we may as well write that check the first of every year!!

 

[my little penguin]

You pay for each refill
our insurance requires a 90 script after the first refill otherwise they charge a higher copay
so it may be something to look into for your plan.
plus 90 day scripts are cheaper copays then by the month but you have to do them mail order mostly.

 

[Dexky]

I hope they can all be mail order!! Those have no co-pay! What's up with that? The insurance cos. trying to put the pharmacist out of work??

 

[my little penguin]

Just tell the GI its cheaper for you mail order and they can e script /fax/call your mail order company with a 90 day script while you fill the first one normal one- so he can get the meds and then you have time ( most take 2 weeks to fill ship and deliver to you )

 

[Dexky]

Gonna be a lot of adjusting for us come next year. We've had a so-called Cadillac plan for so long! We've never really had to fight for anything.

 

[Jmrogers4]

Yes, ours writes scripts for year automatically. Even the scope prep?? Like we are just going to go do that one on our own, I'm sure a one time script would have been fine.

 

[Brian'sMom]

I started a new job June 11th and i'm in training...so getting caught up! Dex, Hope the biopsies come back good. I was wondering if Uceris is a maintenance med or just a quick fix too since its in the steroid family. But I got that answered, i think, from reading the thread. Are you very worried about the mtx because of the PCS? (Is that abbrev right?) With us, the Humira wasn't getting it done on its own, inflammation. Pred kinda scares me...not sure why. Well...all the meds scare me. Even Pentasa. I just hate the whole thing!

 

[Dexky]

Hey Kathy, I've still got to get some answers myself! My thoughts, though maybe wrongheaded, were from reading other experiences with mtx and exhaustion. Also, it seems to me since mtx is a maint. med on its own, would using them concurrently rule out both if the combo fails. I don't want to play any more cards than I have to! EJ's inf. markers have been good and, for him at least, symptoms have been relatively few. The whole reason we began discussing mtx was because of some rash symptoms with Humira. Those have settled with the pred preload. I just don't want to burn any bridges until we have to.

And, like you say, they all scare me so I don't want to cross any bridges before I have to either

 

[Brian'sMom]

Mark, I think you are making the right decision. I wouldn't have gone the mtx route for helping with rash/allergic stuff. I agree that there are other options to help in that area. Since EJ's labs are good and colonoscopy was good...i'd keep on the path you are. Its a good day when the gi doc agrees with us!! Keep us posted if you go the Uceris route. Julie's Clare seems to be doing great on it.

(If you ever have to go the mtx route in the future (hopefully you never will have to)...Brian's never had the exhaustion. But Brian is a kid that has always gone 90 miles an hour...he wears everyone out!! So if he's at 80 miles an hour...we might not notice )

 

[crohnsinct]

O has MTX added to deal with psoriasis that wasn't responding to anything else. Low dose (10mg), tablets. It is working on the skin psoriasis but not the scalp. Waiting to see if that matters to GI. Either way, no side effects to report here either. If anything she seems to be getting even better energy,joint pain etc wise.

 

[Dexky]

Well, I got one answer. As long as all stays on an even keel, we are to at least stay on Uceris until Sept. when he'll have his next GI appt. I asked how we'd know if it was working in light of his good crp and sed rate. We are to bring a fresh stool sample with us. Was told this would be better than just blood works. Fecal Cal? Or is there some quicker, in office stool test they may be speaking of?

 

[crohnsinct]

I would be guessing fecal cal to Dex. Sounds good to me. Wish our doc used fecal cal.

 

[my little penguin]

^^^ yeah that
our gi uses fecal cal since Ds normally has normal blood work.

 

[Brian'sMom]

If the normal bloodwork can be incorrect how come GI's don't think abnormal bloodwork can also be incorrect? If that's the component for giving or not giving a fecal cal test...well that's just stupid. But I'm not a big GI doc fan. I think a lot of it (when it comes to the GI tract ) is a guessing game

 

[my little penguin]

Normal blood work can be incorrect for some since the inflammatory markers from the gut take a very long time to reach the blood stream.
abnormal markers are more than likely correct.
also keep in mind fecal cal will be normal as will be blood if the inflammation is mainly in the rectal area since that does not get into the blood stream or hang around long enough to increase the inflammatory markers in the stool.

 

[Brian'sMom]

However, my son's inflammation markers were up once...he had a bad case of poison ivy. I'm just irritated our GI won't do fecal cal. We're a big hospital too

 

[Tesscorm]

Our GIs don't do it either... asked at ped GI (at large children's hospital) and again with new adult GI. They had different reasons but, in the end, it was 'No' from both.

 

[my little penguin]

Brian'smom
Your right any inflammation in the body can raise the inflammatory markers ( ie poison ivy) not just the gut.
So in your sons case the markers were correct for what was going on at the time .
As far as fecal cal.
Your ped can order the test. Some gi's won't order it if they know your insurance won't cover it since they would not be able to utilize it routinely.( kwim)

 

[vtfamily]

You go Dex!

 

[Dexky]

He started Uceris on Tuesday morning. On Thursday night, he said without being asked anything that his poops were looking good "lately". I didn't really try to get him to elaborate.

:dusty: I just like the thought of a hu-hum some odd year old woman in a cheerleader outfit!!

 

[Clash]

Oh I hope it does well for him!!

 

[DustyKat]

Well I was going to thank your post but now you can just kiss my arse!

WTG EJ! :dusty:

Dusty. xxx

 

[Brian'sMom]

That's great Mark! Must feel great Happy for EJ

 

[my little penguin]

Woohoo for uceris !!!

 

[Dexky]

Yeah, I'm a little less sure now. Being the weekend, I get to be around him all day and(yesterday, at least) he's still having 5-6 bm's a day! No pain and no blood though! Maybe it was something he ate?

 

[Jmrogers4]

Hopefully just needs to heal up some more inside. Yeah for good looking poops!

 

[DustyKat]

:ghug: Still early days yet Dex and for the lad looking at his poops everyday he may well be seeing quite a difference.

:hang: Bro!

Dusty. xxx