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08-26-2016, 11:22 AM   #91
ronroush7
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Oh, oh, I should also give this good update - during the worst of this flare, I was having up to 20 bowel movements per day. They've asked me to track my bathroom trips. Up until a few days ago it was still 10 to 20 per day. Yesterday it was 7. And today, so far, only 2!
Yeah

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08-26-2016, 11:46 AM   #92
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Yay!!
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08-26-2016, 01:11 PM   #93
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Okay, well, now I've had 4 bathroom trips today and the more recent 2 were pretty rough - it was the "peeing out your butt" type of diarrhea, ugh. The good news is, they gave me some Imodium and that seemed to stop it. My gut has been giving me some crampy pain ever since. I know I still have a long road to go until I'm out of this flare.
08-26-2016, 01:58 PM   #94
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Bah. More bad news. My insurance company won't cover the Vivonex unless it's for tube-feeding. When it's used orally, they consider it a "grocery" item and won't pay for it. Without insurance, the lady at the supplier said it's over $600 for a 2-week supply. Ummmm, no. I think I can get it on amazon for significantly cheaper than that, so I guess that's what I'm going to try. The nutritionist/dietician lady here did give me one case to take home, so I'll work through that case and figure out what my options are. Just more frustration. Oh well. Flaring is never easy and getting out of a flare is never easy.
08-26-2016, 02:04 PM   #95
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Bah. More bad news. My insurance company won't cover the Vivonex unless it's for tube-feeding. When it's used orally, they consider it a "grocery" item and won't pay for it. Without insurance, the lady at the supplier said it's over $600 for a 2-week supply. Ummmm, no. I think I can get it on amazon for significantly cheaper than that, so I guess that's what I'm going to try. The nutritionist/dietician lady here did give me one case to take home, so I'll work through that case and figure out what my options are. Just more frustration. Oh well. Flaring is never easy and getting out of a flare is never easy.
Standing with you

08-26-2016, 03:10 PM   #96
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You need to appeal it
Through your Dme ( durable medical equipment clause )
There should be a Dme company for your insurance
It's infusion therapy supplies ( not formula )
Oley foundation has donations so they can help
Also vionex direct from the manufacturer gets a discount and is much cheaper than from a Dme

Otherwise avoid Amazon since if formula isn't stored properly you will get very ill
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08-26-2016, 03:23 PM   #97
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Our insurance would not cover Peptamen Jr till we started the tube feeds. We bought it directly from the manufacturer. It was expensive but according to our GI, they often do not cover it unless it's given through a tube.

But it's worth trying to appeal. Oley Foundation does have supply exchanges. And feedingtubeawareness.com also lists a couple of supply exchanges on their site.
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08-26-2016, 07:06 PM   #98
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Ah, crap. I had ordered from amazon (cancelled that order just now). I'm exhausted and wouldn't know the first step of contesting that right now. I have 24 in my fridge - I think I'm going to just try that, a few each day, and then slowly add in very bland low-FODMAP foods (I'm thinking there's a lot of rice in my near future). Hopefully with the pred and some vivonex I can do this. It's just been a really long week, I'm exhausted and I'm done right now. I'm home and I see that the laundry hasn't been done, nothing's been done, I'm just a little overwhelmed right now. Ugh.

The pred taper is just a quick burst, too, but at least if I need more of that I can call and beg my GI to put me on a longer taper (I'm doing 40 mg for 5 days, then 30 mg for 5 days, 20 for 5 days, 10 for 5 days, then done, so only 20 days total and today was day 1.)
08-26-2016, 07:16 PM   #99
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Cat, just as a head's up, your MRE probably won't show inflammation if you have been on IV steroids and will be on 40mg Pred. It could, but it may not, especially if the inflammation was mild because IV steroids are pretty strong.

I hope you're able to get some Vivonex soon. Glad they gave you a case.
08-27-2016, 09:22 AM   #100
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Well, I just spent a very frustrating hour on the phone with my prescription drug coverage provider and got nowhere. Ended up hanging up in tears. For some reason, even though I have a prescription slip in hand for Vivonex, they need it faxed to them by a doctor - I cannot fax it to them myself (???). That's what they told me. That makes absolutely no sense to me. I have the damn prescription so just fill it! Ugh.

I think I'm going to drink my morning Vivonex, wait for the pred jitters to calm down a bit, and then just go to my local pharmacy and see if they can do anything. Maybe they can special order it in or something. If not, I'm going to call my GI first thing on Monday morning, and I'll see if he can fax the prescription over to the stupid bleeping prescription drug coverage people.

Why the F is this so hard? Like it's not hard enough having a chronic illness, but you also have to fight with everybody and put in way more effort than should be necessary just to get the things you need to keep you alive. It's so unfair and it's draining and it just sucks.
08-27-2016, 09:24 AM   #101
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Well, I just spent a very frustrating hour on the phone with my prescription drug coverage provider and got nowhere. Ended up hanging up in tears. For some reason, even though I have a prescription slip in hand for Vivonex, they need it faxed to them by a doctor - I cannot fax it to them myself (???). That's what they told me. That makes absolutely no sense to me. I have the damn prescription so just fill it! Ugh.

I think I'm going to drink my morning Vivonex, wait for the pred jitters to calm down a bit, and then just go to my local pharmacy and see if they can do anything. Maybe they can special order it in or something. If not, I'm going to call my GI first thing on Monday morning, and I'll see if he can fax the prescription over to the stupid bleeping prescription drug coverage people.

Why the F is this so hard? Like it's not hard enough having a chronic illness, but you also have to fight with everybody and put in way more effort than should be necessary just to get the things you need to keep you alive. It's so unfair and it's draining and it just sucks.
I agree.

08-28-2016, 06:15 AM   #102
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The vionex won't be covered under your prescription drug coverage benefits ( at least for most folks ) so taking it to a phamacy will give you a very high price. The inpatient home health service nurse at the hospital should have faxed it and the letter of medical necessity to the durable medical equipment company that works for your insurance. They are the ones who get it covered under your Medical benefits as infusion therapy supplies for home.

99% of prescription plans that I know of do not cover elemental formula under the prescription plan - unless you have certain inborn health conditions found at birth and even if you don't unless your tube fed.

I know it's very nerve wracking - went through it twice for Ds when they first prescribed peptamen Jr and the switched inpatient to neocate Jr where we had to change the flavor and needed a new script etc and were told it wasn't covered then it was and getting delivery set up etc...
Thankfully once you get your first months supply ( however maddening) it will get much easier to "refill" it

Good luck and lots of gentle hugs

How much vionex have you been able to drink a day ?
Not getting enough calories in can take its toll as well
08-28-2016, 10:58 AM   #103
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I've only had 3 Vivonex per day - partly because I can't drink much more than that, and partly because I'm rationing it until I can get some more ordered. I had talked to a pharmacy on Friday that quoted me something like $600 for 4 cases. That's the cheapest price I've found so I'm just going to call them tomorrow morning when they open (they are closed on weekends) and put that on my credit card. Stuff like this is what credit cards are for, and my parents said they'd help me out with money stuff if need be. 4 cases should be more than enough to get me through - in the hospital they told me to try EEN for 2 weeks and then slowly start to transition over to bland low-FODMAP foods (I'm going to start with rice I think). I've already been doing EEN for something like 4 or 5 days and I am improving. Although if starting solid foods again becomes problematic then I'm going to be in for an expensive time, and at that point I'll figure something else out. Right now I'm just so tired of fighting insurance companies, I don't care anymore, I'll just pay the $600 and deal with it.
08-28-2016, 11:35 AM   #104
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Yikes that's about 750 calories a day

Hope you can get through to the pharmacy in the am
Also ask them how many cans are in the case
Typically is 27 cans In a case which gives you 2-3 days of formula depending on your calorie needs
08-28-2016, 11:39 AM   #105
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Do you know how many you're supposed to be drinking Cat? 750 calories a day means you will continue to lose weight quickly.

My daughter needed 2400 calories a day to gain, about 1600 calories to maintain. I would guess you need at least 1600 calories - 6 cans or so.

Sending hugs -- insurance is such a pain sometimes.
08-28-2016, 02:35 PM   #106
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Yes, I know, they told me to drink 6 cartons daily. And I believe there's 24 in a case - so if I were doing that right now, I'd run out really quickly. I do intend to drink more as soon as I can get more. I'm sure I could have done 4 yesterday and same for today, my appetite for it is gradually improving. I just don't want to run out right now because then I'll be sunk. As soon as I can talk to the pharmacy tomorrow and make sure that I can get the 4 cases that are on my prescription (and how quickly), then I'll feel much more comfortable with drinking more than 3 per day because then I'd know that I have enough to get me through this.

My weight actually has stabilized, I think. At least, I didn't lose any weight today. I'd been losing about 1 lb per day for over a week, but today my weight was 129 which was the same as yesterday so hopefully that's a good sign. And I've only had 1 bowel movement today!! Not sure if it's the pred or the Vivonex (probably a combo of both) but something is helping.

I'm just sort of in panic mode until tomorrow! Tomorrow I can talk to the pharmacy and I can talk to my GI. For today I'm still in this weird holding pattern where I desperately don't want to run low on Vivonex so I'm purposely not drinking enough. I know it's bad but the alternative (running out) is worse. I promise I'll be getting much more adequate calories after tomorrow! And I appreciate you guys worrying about me.
08-29-2016, 11:53 AM   #107
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Okay, I got ahold of the specialty pharmacy and they're sending me 3.5 cases of Vivonex for a bargain price of only $626. Should arrive tomorrow or Wednesday. So I feel comfortable now drinking more than 3 per day because more is on the way. I've already had 2 today and I'm aiming to try to drink 5. I know that's still not enough calories but I just don't think I can drink more than that today. I'm still not feeling great, the last 2 days I've only had 2 bowel movements per day but today it's already been 3 and I'm a little more crampy today than I've been the past few days. Hopefully just a fluke. Of course there's still the little voice of panic in the back of my head, screaming at me that when I stop the Vivonex and/or when I taper my pred that everything's just going to go to hell again. That's a definite fear and I'm just trying not to think about it.

Also frustrated with my GI's office. I called them at 8 AM on the dot and the receptionist was aware of my situation and she said somebody would call me back. Well, it's now noon and no call. I don't know what's up with that, I'm going to call them back myself in a little bit.
08-29-2016, 12:44 PM   #108
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Hugs
We had similar fears for when Ds restarted food and stopped pred ( he was on it for sweets syndrome )
It's been two months and things are not the best but the D hasn't come back
Granted Ds did have to stay on een for 8 weeks .

When he was hospitalized the second time we were told een for only two weeks btw
08-29-2016, 12:59 PM   #109
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I'm frustrated now. Called my GI's office to see what's going on. They got me an appointment - for Sept 14th. That's over 2 weeks away. Guess I'm not having that MRE, then! That's really frustrating.

What would you guys do? Just wait for Sept 14th, or should I see if I can get an appointment sooner with my GP? (He usually has openings the same week.)
08-29-2016, 01:10 PM   #110
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I'm frustrated now. Called my GI's office to see what's going on. They got me an appointment - for Sept 14th. That's over 2 weeks away. Guess I'm not having that MRE, then! That's really frustrating.

What would you guys do? Just wait for Sept 14th, or should I see if I can get an appointment sooner with my GP? (He usually has openings the same week.)
See if you could get in sooner with the GP.

08-29-2016, 01:11 PM   #111
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I just called my GP and can get in tomorrow. That's a relief.
08-29-2016, 01:11 PM   #112
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I'm not sure your GP will be able to do much. Do you think he/she would be willing to call and get you in with your GI earlier?

None of your tests showed inflammation, right? FC, scopes, biopsies? I wonder if the GI doesn't think it's urgent because they couldn't find inflammation.

Though considering he has you on Prednisone, I would assume he thinks there is inflammation somewhere.

I think the MRE would not show much anyway, since you have been on IV steroids + plus Pred + EEN. Not sure it's even worth doing at this point.
08-29-2016, 01:14 PM   #113
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my little penguin's son was in a very similar situation - they couldn't find inflammation. I hope she'll chime in soon with ideas.
08-29-2016, 01:15 PM   #114
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I agree with Maya
Mre probably isn't going to show much at all at this point
I would call your Gi office back
When Ds was discharged the go office called and have him
A follow up appt - 4 months later - I insisted they check with the Gi
The Gi wanted Ds seen within two days
So please call back
Gp really can't do Gi stuff
08-29-2016, 01:16 PM   #115
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I did get an appointment with my GP for tomorrow afternoon. I will discuss with him the MRE and see what he thinks. And yeah, the thought all along has been that I have IBD and we have ruled out any other possibilities that pop up. The few times they've found inflammation either on blood test or on scope, it's always been mild and non-specific.

I'm sort of adrift because I'm not sure what criteria I should use for going back to work, if it should just be based solely on how I feel or what. So I'm also going to ask my GP about that tomorrow. I just feel like I need guidance, about whether to do the MRE or not and when to work or how long I should be out of work and what to do if the taper doesn't go well, etc. I was in the hospital and had people checking up on me like 10 times a day, now I'm home and nobody's checking on me and I feel adrift. I need guidance!
08-29-2016, 01:17 PM   #116
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I should add, my GP does do some GI stuff. I know he performs colonoscopies. He's obviously not as knowledgeable as a GI but he's not clueless either.
08-29-2016, 01:19 PM   #117
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Best to you, Cat

08-29-2016, 01:21 PM   #118
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Have they ever looked at MCAS for you ??

http://www.mastocytosis.ca/2011%20MS...h%20Slides.pdf
08-29-2016, 01:22 PM   #119
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It's worth talking to the GP and getting his opinion. I doubt it'll hurt and maybe he can get your GI to see you earlier.

Have they had an infectious disease specialist look at you? Rheumatology?
08-29-2016, 01:25 PM   #120
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The worry is that if the problem is not IBD, then Prednisone will just mask it.

I know at a Children's Hospital, they would not give steroids unless there was some objective evidence of inflammation, such as positive biopsies.

I don't mean to worry you Cat, just want you to be aware of the possibilities . Certain rheumatic conditions can cause GI symptoms and even mild gut inflammation, so there are really other things it could be.
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