EGD+C, difficult insurance

[Jenn]

Hi,
My son goes in for a checkup EGD (maybe) and colonoscopy tomorrow. I would appreciate your good thoughts for us. His Humira levels have been lower than target (6/8) the last six months or so, but no antibodies. Despite 5+ years successfully on Humira, he is in puberty, so it's a roller coaster.

Also venting about insurance. It's always been great in the past but they now: deny the fecal calprotectin lab test as not necessary for maintenance (would be a great data point right now); deny doubling frequency of Humira (from 1 every 2 weeks to 1/week) for a couple months; and deny covering the EGD (colonoscopy is ok). EGD is ok for colitis and not crohn's?!? Makes NO sense. Doc and I have appealed. We are out of time on the EGD tomorrow, so that will likely get postponed and have to go through anesthesia a separate time. SO, so so so frustrating that they don't trust an expert in pediatric GI!

The likely alternative on the meds is to add MTX, I've resisted before, but I think this is a good case for trying it. I really do not want him falling out of remission or needing a different med yet. argh. Poor kid is having a rough cleanout day today too. I'm a *bit* stressed out.

Thanks!
Jennifer

 

[Maya142]

What a pain!! I hate when insurance companies play doctor :ybatty:!

So he will have the colonoscopy tomorrow but not the EGD? Really odd that they would deny an EGD for Crohn's. VERY frustrating too.

We resisted MTX for a while too. It ended up working VERY well for my girls and gave Humira the boost it needed. Both my girls needed weekly Humira AND MTX. My older daughter is still on that combination and is doing quite well.

There are lots of tips are tricks for tolerating MTX if your son has trouble. But often kids have no side effects or very mild side effects that are easily managed. If you can get them to agree to increasing Humira to weekly, MTX isn't a bad option.

Hope the prep for the scope isn't too bad. Poor kiddo. It is tough . But tomorrow it will be over!!

 

[pdx]

My daughter has also had good results with biologic + mtx. She was on Remicade + mtx for the first year of treatment with good results. We took her off the mtx after a year (on her doctor's advice) and she was flaring 6 months later and had started to develop antibodies to Remicade. We added the mtx back in, and she's doing well again, with no detectable antibodies and Remicade levels back up to good numbers. She takes oral mtx and tolerates it pretty well.

That's so frustrating about your insurance; I can't believe they don't cover the EGD. Hope you can get everything approved in the end.

Hope the colonoscopy (and the rest of the prep) goes well.

 

[my little penguin]

We have similar problems getting Fecal Cal covered apparently a few newer studies came out two years ago and most insurance companies-used those as a reason not to cover them

Has he had evidence of damage or inflammation on Egd in the past
Ds has duodenitis every time they look so maybe they cover it for that ..,.


Ds has been on the combo of humira and mtx for 3-4 years without issues
Fir him pills work better than shots (mtx shots make him sick )
But everyone is different....

Good luck

 

[Maya142]

How did the scope go? Any news?

 

[Jenn]

Thank you all for your thoughts! Scope went well, always stressful, he was not a happy camper of course. Some ulcers in the rectum and some inflammation in the ascending colon near ileum, but otherwise looked great. Didn't do the EGD, despite doc calling last minute, but he had no issues there before, so probably ok, and likely moot in terms of course of action. If I finally understand right, it's our specific plan that denies it. It seems to be a mistake, but it must save ins. a ton of money! grrrr.

Will discuss biopsies with doc in a couple weeks. But with these results and his low levels, we'll need to do something. Personally, I'm leaning toward adding the MTX. I am concerned about him tolerating it, we'll have to see. We'd added 6mp for a year before, and I know MTX is the preferred combo for boys. Although I'm doubting insurance will even cover that now!

It is EXHAUSTING talking to the doc and nurses and insurance and pharmacy, round and round, about how difficult insurance is being, with no resolution. We just want our kids to be well cared for!

Jennifer

 

[Farmwife]

I've been there. It's s amazing and heart breaking what insurance can do.
I'm glad the scopes are done.
Grace did mtx injections with no side effects.
She was also on Remicade and azathioprine. Still no side effects.

 

[Maya142]

I have a whole list of tips for MTX if you need them . But first, I'd just try it. You may be surprised. My older daughter takes it and has been taking it for 6 years or so...no real issues. Some fatigue the day after the shot, some nausea (which she can take Zofran for) but nothing that really impacts her life much.

She takes it Friday night so she has Saturday to recover.

Some kids do better with pills, others with shots. My girls did better with shots, but I have heard of kids who did better with pills. It's very individual.

The one thing I'd make sure of is that he is getting folic acid if he is put on MTX. It will REALLY help with side effects. We started out with 1 mg daily, but my girls had side effects (mouth sores, nausea) so we upped it to 2 mg daily. Then the side effects went away.

The shot is teeny-tiny and honestly, does not hurt according to my girls. It's a tiny needle. My older daughter says if she uses Buzzy or ice, she doesn't even feel it (but it hurts so little that she doesn't bother).

It is NOTHING like Humira, so he shouldn't worry about that.

Sending hugs - I'm sure the scopes were not fun. Poor kiddo. But at least the colonoscopy is over - we find that is way worse than an EGD if he needs one later.

 

[Jenn]

Thanks again!

I was wrong about him not having previous ulcers in EGD, so if insurance ever gets around to the appeal, we'll probably have to take him back in. At least he doesn't have to the cleanout part, but still anesthesia risk, etc. sigh!

Insurance is taking its time with the appeal for weekly Humira (I guess expedited appeal was denied - knee jerk quanity limit, argh), plus there's some confusion about whether or not the GI can get a peer to peer review to discuss it. So we decided to not wait it out and start MTX. I'm ok with that, we chose pills to start with, though it seems it's a crapshoot with either one and whether he'll have side effects. Planning to start this weekend.

My son's not out of remission on Humira only, and he's 15, but the doc prescribed 25mg once/week. That seems excessive to me and more likely to have side effects? Waiting to hear her response.

Also, the folic acid is only 5mg the day after the mtx. I guess I can see how that might have more impact on the 1-2 day post-dose-side-effect window. But overall that's way less/week than the 1 or 2mg daily I see people posting. So confusing... sigh!

 

[my little penguin]

Most do folic acid daily including shot day
That's standard kiddie protocol
Giving folic acid once a week -is more what adults have tried (most failed with that )
I would ask if it was ok daily
Mtx at 25 mg is the highest dose you can give (at least per Ds rheumo )
Ds gets side bad effects above 17.5 mg
But each kiddo is different


Peer to peer is a given for appeals process
We are in the process right now for another drug
It's just a matter of getting the two docs in the phone
But doesn't take long
Much faster than original review

Can't believe they won't approve weekly humira
Which is pretty standard for increase

I could see every 5 days (Ds is on this )
But once a week wow

Fingers crossed mtx goes well

First dose or two he might be fine
For us it was the third or fourth dose at the higher level

 

[Maya142]

My kids had a hard time with 25 mg dose. But the GOOD part is - if he does, there is lots of room to lower the dose.

My girls were on anything from 7.5 mg to 25 mg. My older daughter who is still on MTX is on 15 mg. Any higher and she has more side effects, any lower and she flares.

Are they giving you folic acid once a week or folinic acid?? I ask because folinic acid or Leucovorin is actually a "rescue drug" which is used when MTX is given in high doses for cancer.

Rheumatologists use it at much lower doses with MTX. I think rheumatologists tend to use it more than GIs because they have much more experience with MTX since it's been used for juvenile arthritis for years.

Leucovorin, or folinic acid, is given every week, not daily - 12 or 24 hours after the MTX dose.

We did both though - folic acid daily AND Leucovorin - when my girls were on high doses of MTX. We stuck with Leucovorin when my younger daughter's dose was lowered, because she continued to have side effects that were hard to deal with (eventually we had to take her off MTX altogether).

With my older daughter, once she got to 15 mg, she didn't need Leucovorin. She just takes folic acid daily and sometimes Zofran after MTX (not every weekend).

Our rheumatologist would not let us do pills above a certain dose. Typically, if the dose is as high as 25 mg, it's given by injection. I think it was 20 mg, but my girls went to shots at a lower dose since they both tolerated the shots better.

Every kid is different though. I would try it out and see how he does. My girls also did not have issues with the first few doses, it was probably a couple doses in at 25 mg before they had side effects.

Do you have Zofran at home, in case he gets nauseous? We gave Zofran before the injection and the day after the shot.

We had no issues with going to Humira weekly - I hope they are able to get it approved. With another biologic we had success with increasing the dose after MANY appeals and a peer to peer review. It took a long time, but it did work eventually.

Good luck!!!

 

[Jenn]

Frustrating! GI says 25mg is right for his weight. I'd said I wanted to be cautious at first, then ramp up. We have some busy weekends ahead, so it's hard to balance it. Tempting to do 15mg anyway! Maybe we should've opted for the shots instead of the pills. He wasn't thrilled about another shot, though I know they don't hurt like Humira does. Guess we'll see. sigh

We don't have anti-nausea on hand, but doc said she's call it in if we need it.

It's "folic acid", not folinic, still not sure why it's day after and not daily instead. grrr.

I remember reading an article a couple years ago about a gene marker that usually indicates when someone can tolerate mtx, I'll have to look that up and look at his 23andme chart again. ha

 

[Maya142]

Do you just start a 25 mg or work your way up? We started at a much lower dose and worked our way up, with weekly blood work. That was 6-7 years ago, so it's possible recommendations have changed. And that was rheumatology and not GI, and sometimes they do things differently.

I'd listen to his GI and see how it goes. No idea when school starts for you, but I'd do it on a weekend, just so once school starts, he has a day to recover if he needs it.

The way folic acid is given varies widely. I think in the past it used to be given weekly but now it's usually given daily. Some docs say it's ok to give it the day of the shot and others say to skip it the day of the shot.

Some docs prescribe it, others say to just take the OTC version. Some say that it's ok to just give kids a multivitamin daily and that has enough folic acid in it (I've heard of kids just taking Flinstone vitamins for example and being fine with that ).

But it is usually daily...You could try weekly and if it doesn't work, ask to take it daily.

The shot is REALLY tiny and basically painless according to my girls. They did their own shots and were around your son's age at the time. You can use Buzzy or ice and I bet he'll barely feel it. It's really nothing like the Humira shot.

 

[my little penguin]

Plus some kids don't have any side effects
Some handle the pills great
Others handle the shot without issues

Definitely talk to your GI if you have concern
But you really need to have joint decision with the GI on how much to give .
Following doctors orders
So they know exactly what your child is taking when

 

[Jenn]

He tolerated the oral, lower 15mg, dose fine. Doc probably not happy with me, in that we risk it not doing anything. Weight-wise, he's closer to 20 than 25 anyway. I guess 25 is usually done as shot instead of pills because of the nausea. But I argued about the goal, not to induce remission but maintain it. He chose to do the folic acid 5mg once/wk instead of daily, doc said we could go either way.

Bloodwork in a couple weeks, but not checking humira level for a couple more months. I have always err'ed on the side of caution though. I mean, he's fine, no symptoms, signs, issues, scope/biopsies good, no antibodies, just lower than target blood levels of humira. I didn't want to make him feel sick, mtx terrifies me (i'm aware unreasonably). We can bump up over time of course. We'd been sitting on the low level for 6 months already...

The poor doc gets lots of discourse/resistance from me, we often seem on different pages. It's just really frustrating to read studies (even adults on only 15mg) and she doesn't order what it seems most others are doing. It's hard because we are all on cutting edge on research done, no set standards, especially for kids. And I'm focusing on his specific case anyway. Hyper protective of course, but he is still my kid... :/

 

[Maya142]

We have found that pediatric specialists treat differently from adult specialists. Both my girls are seeing adult rheumatologists now (younger one just switched from peds) and the protocols are just different. Not bad or good, just different.

Adults tend not to handle meds as well as kids (and when I say adults, I'm talking middle aged "real" adults - not 20 year olds!) and that's why lower doses are used.

MTX can cause liver issues and that's probably why the studies with adults are usually done at 15 mg. 25 mg is actually used a lot with kids - our pediatric GI says that it's the standard dose they use for kids at our children's hospital (except very little kids, obviously).

Same with our pediatric rheumatologist - our goal was 25 mg. My girls were between 13-16 at the time. Both girls were under 105 lbs or so.

We just couldn't stay on 25 mg because both girls had side effects, but some kids have no issues at all. It did work GREAT for both of them.

That said, neither of my girls were in remission when we had added MTX, so I can understand wanting to try a lower dose first.

25 mg is given as an injection because of absorption issues with the pills, as well as GI upset. Some docs insist on using injections for 15 mg or above, others say 20 mg or above. It really varies.

Kids are also not little adults, and they tend to be treated more aggressively because we need to save their intestines/joints. We have found that pediatric specialists are much more comfortable with using higher doses of MTX, much higher doses of biologics etc.

Some kids also metabolize meds very quickly and since they are growing and gaining, they often need higher doses.

For example, the adult rheumatologist my daughter saw commented that she would never use 20 mg/kg of Remicade ("high dose Remicade") on a 60 year old, but there was no issue at all with a 20 year old. In fact she said "You were on the kiddie dose!!" to M, which M wasn't too happy about.

It also depends on what the purpose of MTX is in his specific case - if it's to "boost" Humira and prevent antibodies, you might be able to get away with a lower dose. If he was really flaring and you needed to get his Crohn's under control ASAP, then the higher dose would make a lot of sense.

I would get a second opinion if you don't trust this doc.

 

[Jenn]

updating.... the Humira levels were a little higher, but not enough, so we bumped up to 20mg MTX. He's tolerating it fine, will check again in a couple more months. Such a slow process. Everything else good though.

And what timing, just as we get this worked out, we'll pull him off meds in Feb since he needs his wisdom teeth pulled! Looks like the general guideline is 1-2 weeks before and after surgery, need to see what his GI recommends of course.

 

[Maya142]

Definitely check with his GI. My daughters have both had surgeries and stayed on their biologics. My younger daughter had abdominal surgery last year while on a biologic, immunomodulator and even Entocort and she healed well.

She also had hip surgery this year. She stayed on her immunomodulator and delayed one dose of her biologic for a week. No issues at all.

The only issue we had was when she was on Prednisone and had a mole removed. It was a very minor surgery which should have taken 1 month to heal completely. Because of the Pred, it took 6 months!! In retrospect, we should have waited to do that surgery till she was off the Pred. I would not do surgery on Prednisone again - that is much riskier than biologics according to my daughter's surgeons.

Both my girls were taken off Humira for their wisdom teeth. This was years ago, when doctors were much more cautious about biologics. BOTH girls flared - one had a REALLY big flare that took months to control. It was a real nightmare. They both stopped Humira only for 3 weeks.

 

[Jenn]

Wisdom teeth extraction went well, seems to be recovering fine. 6 years' success on Humira now, but with some struggles. His Humira blood levels have come up, but still not enough, so we'll bump up to the full 25mg MTX (as GI wanted to do from beginning, but alas I'm so cautious and stubborn!). He's on MTX holiday for a month around the surgery and Humira delayed a week while on antibiotics. Also boosting with VSL#3 while doing the antibiotics. He's lost 7 lbs since last summer, so that's a little alarming, but everything else is looking good.

 

[pdx]

Thanks for the update. Glad that the extraction went well, and I hope that the mtx increase does the trick.