I wouldn’t do it. It’s pretty dangerous to rapidly halt long-term steroids. The problem is that the adrenal gland, which normally produces natural steroids that you need, can become “suppressed” after sustained pharmaceutical steroids, and lose the ability to produce them. The duration and degree of suppression varies, and three months is a tricky amount of time for prediction.

There are two safer approaches you could take. You could ask your doctor to prescribe a prednisone taper of a duration he considers appropriate. Or you could fill the prescription and use your well-honed argumentation skills to try to get reimbursed retroactively. The second approach is what I did with VSL #3 DS, and eventually my state’s insurance administration made the insurance company reimburse me retroactively for a year’s worth (and cover it going forward).

@Scott F posted:

You could ask your doctor to prescribe a prednisone taper of a duration he considers appropriate. Or you could fill the prescription and use your well-honed argumentation skills to try to get reimbursed retroactively. The second approach is what I did with VSL #3 DS, and eventually my state’s insurance administration made the insurance company reimburse me retroactively for a year’s worth (and cover it going forward).

Scott, I like your suggestions, and I think the Prednisone taper is a great idea.  As for using argumentation skills, I intend to do that prospectively tomorrow to see if I can nip the issue in the bud and be able to get the medicine at reasonable copay cost tomorrow.  The retroactive reimbursement option is also a possibility.  I am hoping to resolve the issue tomorrow because my Remicade on 11/2/21 should have exhausted my deductible and I should only be getting asked for a copay on the med, and the issue is why have the Remicade payment(s) not been processed or are not being reflected in my deductible balance.  It could be that the deductible is shot/exhausted and I will get the $636.94 back.  I will find out more tomorrow.

Regarding steroid suppression of the adrenal gland, does this mean I will get adrenaline rushes when I withdraw?  This doesn't sound like a bad thing.  But I had thought my doctor told me that 90% of Entocort is absorbed in the gut and only 10% is systemically absorbed.  The 10% does that much suppression?

BTW, I have gained a bunch of weight while on Entocort. So weight loss, if it happens from withdrawal, would be appropriate.

I agree with not stopping cold turkey.

Is the insurance company questioning the dose?  Would they cover a maintenance dose of 6mg?   And have you looked into some of the discount programs like Good Rx?  

I hope your doctor is fighting along with you!

@AMB posted:

Is the insurance company questioning the dose?  Would they cover a maintenance dose of 6mg?   And have you looked into some of the discount programs like Good Rx?

AMB,

Good questions.  I originally filled the Entocort on the same policy and I only paid a copay on it.  I am on the same ConnectiCare policy which started a new policy period on 11/1/21.  $5600 deductible, but my Remicade infusion, which is $10,000 plus, should have exhausted it on 11/2/21.  I am being told there is $4,000 left on the deductible which makes no sense.  Insurance pays around $3000 on a Remicade infusion and Remistart picks up the rest, but the Remistart payments count as if coming from your pocket as they are made on your behalf.  So something is not right and I am wondering if the Remistart payment did not get credited yet.

It also occurred to me that my doctor did not write the prescription correctly.  He wrote a 60 day supply.  However he wants me on 9 mg until I get dilated/scoped on January 5 so that the progress of the inflammation at the inlet can be checked at that time.  So I will check with him on the scrip as well.

@CTBarrister posted:

Regarding steroid suppression of the adrenal gland, does this mean I will get adrenaline rushes when I withdraw?  This doesn't sound like a bad thing.  But I had thought my doctor told me that 90% of Entocort is absorbed in the gut and only 10% is systemically absorbed.  The 10% does that much suppression?

BTW, I have gained a bunch of weight while on Entocort. So weight loss, if it happens from withdrawal, would be appropriate.

The adrenal cortex, where endogenous steroids are produced, is essentially unrelated to the adrenal medulla, where adrenaline is produced. So no adrenaline rushes are in the offing. The 90%/10% is extremely approximate, and your weight gain (a systemic side effect) suggests that you may have absorbed a lot more systemically than you hoped/expected. While a *slow* taper of steroids will tend to reverse some steroid side effects, like weight gain, an abrupt withdrawal can trigger Addisonian Crisis. This depends on your specific degree of systemic absorption, which no one knows, and your specific degree of adrenal suppression, which no one knows.

The standard duration for taking Entocort is 8 weeks. If you had it for 3 months that's not so much more. When I took it for 8 weeks several years ago I didn't bother about simply withdrawing, and there were no side effects as far as I remember. I'd be less worried about side effects but about inflammation returning.

So I would recommend reducing the dosage to 6 mg in a first step. (Do you have the 3 mg capsules?) At least till your next scope in January.

I'm taking Entocort myself for 8 years now, most of the time 6 mg per day (3 mg with breakfast and 3 mg with supper, in contrast to prednisone it has a mainly local effect inside the bowel and I try to stretch the anti-inflammatory effect over the day).

At the moment, together with antibiotics, I could reduce to 2x 1,5 mg per day. By the way, the capsules can be opened and the micro-pellets inside are resistant to gastric acid. The instructions of my med say the pellets can be taken without the shell, so I can split the dosage if needed.

I may have neglected to mention I am totally out of the medicine as of today and unless I pay $636.94, taking any lesser dosage is not an option since I do not have any medicine to take. They have a 60 day refill waiting for $636.94 and have asked me to pay up. I don't wanna pay up because I don't believe I should owe that much plus it's a crazy amount to pay for any medicine. As Scott mentioned there could be other medication options like a prednisone taper.

Any of you guys ever pay $636.94 for a refill of any medicine?

I have sometimes paid ridiculous amounts for medications, but I also avoid it like poison. Take a look at goodrx.com - in one case I had to fill a one-time prescription that wasn’t worth fighting with the insurance company about, and goodrx.com found me a *much* less expensive source. I just looked up Entocort and found very significant discounts around here.

I spoke to my insurer (ConnectiCare) and so far haven't got any kind of answer that makes any sense. Still undecided on what to do, at this point.

@CTBarrister posted:

I spoke to my insurer (ConnectiCare) and so far haven't got any kind of answer that makes any sense. Still undecided on what to do, at this point.

Why not see if you can find a better price point? Assuming the medication has been providing value to you it might be easier to maintain perspective at a more reasonable price.

Jack Benny (a 20th century comedian) had nurtured a reputation for extreme frugality. His best known joke went something like this:

ROBBER (pointing a gun at Jack): Your money or your life!

JACK: …

ROBBER: Which is it?!

JACK: I’m thinking.

Also: The insurer may be blameless here. If they haven’t received the charge for the infusion yet then they are properly holding you responsible for your deductible. Your system for making the deductible disappear has served you well for quite a while, which can cause you to forget that it’s a bug rather than a feature. I hate deductibles, but they really are supposed to come out of your pocket. You are *much* more than $637 ahead.

I have gotten clarity on the issue. The insurer does not have a pre-authorization on the medication from my doctor. They had one for the first refill but not since my new policy period started on 11/1/21. So I am trying to facilitate that happening and getting the pharmacy to spot me around 5 days of meds until that happens with the understanding that I will pay whatever it comes to after the pre-authorization is given.

I also confirmed my deductible hasn't been exhausted yet. But it will be after the next Remicade infusion.

@Scott F posted:

I hate deductibles, but they really are supposed to come out of your pocket. You are *much* more than $637 ahead.

This is not true. Payments by third parties on your behalf (Remistart) count towards the deductible even though they don't come out of your personal pocket). This is actually in accordance with Connecticut law which deems third party payments of health insurance premiums to come out of one's pocket as well.

@CTBarrister posted:

This is not true. Payments by third parties on your behalf (Remistart) count towards the deductible even though they don't come out of your personal pocket). This is actually in accordance with Connecticut law which deems third party payments of health insurance premiums to come out of one's pocket as well.

@CTBarrister When I wrote that deductibles are “supposed” to come out of your pocket I didn’t mean that you were doing anything wrong. I just meant that for a deductible to fully accomplish its intended purpose (to discourage health care spending in addition to reducing the insurers payout) it must come out of the subscribers pocket. There is an ongoing war between insurance companies and pharmaceutical companies, and the skirmishes lead to some strange side effects. In this case the pharma company has won the battle, and the side effect is that you get an extra financial benefit from the expensive medication your doctor has prescribed.

Well I ended up learning that anyway I slice it the $636.94 was going against my deductible. I have a $5600 deductible plan, and it sounds like ConnectiCare may have messed up in processing my Remicade claim. In any event they told me if I overpay on the deductible or payments aren't taken into consideration and are credited later I get reimbursed. Once that became clear I also realized that if the medication is overpriced, it doesn't matter, because if I have to pay out of pocket $636.94 plus to get to my deductible, it doesn't matter what it gets spent on.

So I bit the bullet and paid $636.94 for a 60 days supply of Entocort. So yeah the pharma company did win in this case. Total victory.

When I became steroid dependent, I was given Methotrexate, then weaned off Methotrexate. This wasn’t because of my j-pouch, but my asthma. Ask your doctor.

I was on Methotrexate and a few years ago went cold Turkey off of it due to it elevating my liver chemistries. There was no wean, I went right off, was taking 12.5 mg per week