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Crohn's Disease Forum » Treatment » Prednisone/Entocort » When Entocort isn't working?


 
09-01-2016, 06:54 PM   #151
Cat-a-Tonic
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Hmph, frustrated. *Still* no call about the MRE. At this point I don't think it's going to be worth having. I'll see if I get a call tomorrow, but if it goes into next week, I'm going to tell them to forget it.
09-02-2016, 10:54 AM   #152
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Called my GI's office just now to get the status of the MRE. Apparently the test had been ordered on the 30th but for some reason radiology is dragging their feet on scheduling it. The nurse is contacting radiology and is going to call me back.

I realized this is a holiday weekend - not that it matters to me, I won't be leaving the house nor doing anything fun, and I'm still off of work on short-term disability. But, that means that they can't schedule the MRE for Monday since it's a holiday. So I'm presuming I won't be able to have it until Tuesday at this point, ugh.

I guess the "good" news there is that my guts are feeling quite rough today. Yesterday I was feeling borderline okay - I was able to drink all 6 Vivonex and I felt actual hunger, like I really wanted food. Not so much today, I don't want food and I barely can choke down my Vivonex. I was tentatively thinking of trying again to taper my pred tomorrow, to go down to 35 instead of 30 (am currently at 40 mg). So maybe between me feeling rough and me tapering, I'll still be doing poorly enough that the MRE would pick up on something? Probably not likely I know. Really frustrated that radiology is dragging their feet.
09-02-2016, 01:51 PM   #153
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Oh, FFS. Radiology finally called me and they can't get me in for the MRE until the 21st. I had them pencil me in but I'm probably going to cancel. I emailed my GI to let him know and to get his opinion for sure before I cancel. I'm really frustrated. This is one of those days where I just want to hibernate. I don't want to be a person, I don't want to drink my vivonex, I don't want to do anything. I just hate the world today.
09-02-2016, 01:56 PM   #154
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Oh, FFS. Radiology finally called me and they can't get me in for the MRE until the 21st. I had them pencil me in but I'm probably going to cancel. I emailed my GI to let him know and to get his opinion for sure before I cancel. I'm really frustrated. This is one of those days where I just want to hibernate. I don't want to be a person, I don't want to drink my vivonex, I don't want to do anything. I just hate the world today.
Hang in there

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09-02-2016, 02:01 PM   #155
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It might be worth doing. It really depends and there's no way to know without doing it.

My kiddo was on Prednisone for 3 months for her AS (started 40 mg and tapered down). 3 months in, we did an FC test because she'd had belly pain and her FC came back high. We added Entocort, even though she was still on a low dose of Pred (I think 15 mg) and could only get her into scope 2 months later.

By that time, she was almost off the Pred but still on 9 mg Entocort. We did the scope and there was visible inflammation in her TI and colon. It wasn't severe, but it was definitely there.

So by that time, it was 5 months of Prednisone and 9 mg of Entocort but still visible inflammation.

Of course, Pred + Entocort is still different from IV steroids (and you will have been on a higher dose of Pred for longer - she only did 5-6 days of 40 mg). But for her, it was definitely worth doing. Of course, I do wonder how much worse she would have looked without the steroids, but we'll never know.

But she did have an elevated FC so we knew there was inflammation somewhere...I think your FC is not high AND you've been on steroids for months, then it's pretty unlikely that they'll find anything .
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09-02-2016, 03:20 PM   #156
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Yeah, I think my situation is different - my FC was normal when they checked it the week before I was admitted to the hospital. I had been on Entocort for about a month at that time, so I don't know if the Entocort knocked down my numbers or what. That was before pred and before IV steroids. And my scope was normal too, including biopsies. My body loves to look normal on test results even when I feel horrendous. So I'm presuming, based on that and on the fact that I'll have been on pred for awhile, that the MRE is going to be pointless. I don't know. We'll see what my GI says. If he doesn't respond to my email, I've still got that appointment with him on the 14th (he said he was going to try to bump it up sooner but apparently no luck so far). So I can ask him in person about it then, and cancel if need be or still have it if he thinks there's a chance it'll be worthwhile.

Ugh. Well, at least I have something to look forward to. My dad is coming to visit me tomorrow and he's bringing me some money (my parents decided to pay the full amount of what the Vivonex cost me even though I told them they didn't need to give me that much money). He's volunteered to walk my dog, too. And if I'm feeling up to it, he's also said he will take me to the store and buy me a new Lego set. I'm an adult woman but I've had fun building Legos in this flare, it's a nice distraction from what my body is doing. So that'll be a nice visit.
09-02-2016, 03:24 PM   #157
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I'm not sure it would be useful now (because of the steroids) but what about a pillcam? Have you ever had one?
09-02-2016, 04:45 PM   #158
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Yes, I had a pillcam in 2010. It was, of course, normal. I haven't had an MRE yet so at least it's a test I haven't had, but that's about the only thing it has going for it at this point. I will see what my GI has to say but I don't think it's happening.
09-04-2016, 08:49 AM   #159
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I feel like I'm finally having some definite improvement. I've actually felt hunger! I'm still just doing the 6 vivonex cartons per day, am planning to start incorporating bland foods mid-week or so. But wow, I sure could go for some food! I haven't had an appetite in this flare up until the past couple days or so. I don't trust it, yet - will have to see how incorporating food goes. But it seems like a positive sign.

Also, I had a formed/solid stool this morning!! That's definitely a positive sign, it's either been little pieces or just watery mush up until now. I was so proud of my formed stool, it made me more happy than a bowel movement should be able to make a person.

And I'm feeling a bit less weak, slightly stronger. Yesterday I forced myself to go to the store because I was going stir-crazy at home and I needed to pick up a few things. It was hard, I felt weak and shaky at the store, but afterwards I felt somewhat better. Walking does great things for my guts - the best I've felt this year was when I was in Japan, and I was averaging 8-10 miles walking per day on that trip. So I need to make sure I'm walking every day. I'm planning to go to a craft store today because I need more yarn, and if I get ambitious I might even walk my dog around the block.

My mood has improved as well. Yesterday was the first day in weeks that I didn't cry even once. And that's in spite of me getting another migraine aura because I had tapered my pred from 40 to 35 mg yesterday! I'm really loving these noticeable improvements. It's obviously not good in terms of the MRE, but I'm just so happy to be healing. Tomorrow I'm going to taper down to 30 mg (still doing 35 today) and around Wednesday or so I'm going to start doing broth and maybe jello along with my Vivonex. Wish me luck!
09-04-2016, 12:05 PM   #160
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So glad things are improving
Hunger is a great sign
Totally agree walking is the best medicine when you have the strength
Swimming a close second for the gut

Watching elemental formula work is amazing
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09-04-2016, 12:06 PM   #161
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Yay!
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09-04-2016, 12:15 PM   #162
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So glad

09-04-2016, 12:30 PM   #163
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Thanks guys! I've had 2 mushy/watery stools since the formed one this morning, but I'm still feeling okay-ish. I made myself go to a store again today for a bit of walking and yarn shopping. It felt a bit easier today than yesterday to walk around a store. I'm still weak and shaky but I'm a bit less weak and shaky than yesterday. (And buying yarn is guaranteed to put me in a good mood so that helped too!)

I'm hoping to walk my dog around the block tonight when hubby gets home from work. If I can't, I think I can at least do a couple minutes of slow walking on my treadmill. I don't have access to a pool so swimming is out, but I can do walking. I have a fitbit so I know exactly how much walking I'm doing, too. That makes it easy to set a goal or to try to beat the previous day. So yeah, little baby steps of improvement.
09-04-2016, 01:25 PM   #164
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So good
Fwiw when Ds got out of the hospital after losing all the weight and being on een
Same thing store walking for short bits was exhausting for him
09-04-2016, 04:02 PM   #165
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Honestly, yesterday even just driving to the store was exhausting! At least today I wasn't halfway wiped out just getting to the store. My weight is still down, I'm sure that isn't helping the exhaustion. I'm maintaining the weight I'm at, though. I had lost 17 lbs and went from about 146 to about 129/130. I'm currently holding steady at 130, so at least I haven't lost any more.

The weather isn't helping either. It's a warm & humid weekend - temps in the 80s. But it's supposed to cool down to the 70s and even 60s next week. My guts do not like heat and humidity, so hopefully when things cool down then my guts will be a bit happier too.
09-04-2016, 06:31 PM   #166
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Gah, evenings are hard. I've gone all day only drinking Vivonex and water. I want fooooooood! I'm starting to fantasize about food. Like, when I can eat again, I'm thinking of all the things I want to eat. When I was at the store yesterday, I bought a bunch of low-FODMAP flare-friendly food. I already have a lot of rice and jello. I bought broth, rice crackers and rice crispies cereal, plain chips, gluten-free pasta (I can do pasta but low-FODMAP recommends going very light on the gluten so I'm going to try the GF stuff for a bit). And when I can eat again more properly, I'm going to have tuna salad and I'm going to have eggs and chicken. I really, really, really want some food! I would love to just go into my kitchen and cook an egg or grab a handful of chips. Ughh. I feel like the longer I'm on elemental, the harder it is. I want food more every day and today is almost unbearable. I'm really trying to stick to doing 2 weeks straight of elemental - Wednesday will mark 2 weeks. So I just need to keep this going for a few more days, and then not go crazy once I can eat food again (that might be the really hard part). I have to ease back into eating and not just stuff myself silly once the 2 weeks is up. I know that'll make me worse again and I don't want that. I do want food but I don't want to end up back in the hospital or back on EEN. So it's going to be a difficult week and I'm going to have to be really careful.
09-04-2016, 07:01 PM   #167
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When I was on TPN, I was tempted to have baby food.
09-04-2016, 07:41 PM   #168
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Doesn't baby food have a lot of sugar though? I don't know if that would sit well with me. When I can eat again, I'm going to start with broth and jello. I know there's a fair bit of sugar in jello so I won't have a lot, and broth should be okay. From there, if that goes okay, I'm going to move on to rice. And potato chips. I need chips in my life, soon.
09-04-2016, 07:52 PM   #169
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Big hugs
For most week one of een is hard but ok
Week two of een you crave lots of food
Then it gets better
Quinoa pasta with rice flour is pretty good
There is paleo pasta ( almond four /eggs)
Finding plain white rice flour pasta with just water was tricky but the easiest in Ds gut
Just try to get through today
For Ds he lost the weight in April
Just this last month of August he finally gained the weight back
So it might be slow
09-04-2016, 07:54 PM   #170
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Come to think of it, the sugar in the TPN formula gave me bpancreaitis(sp?) so forget the baby food.
09-04-2016, 08:00 PM   #171
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MLP, yeah, I found some rice & corn pasta at the store yesterday but I agree that I think just rice flour pasta would be best. There is a good gluten-free bakery/store in my city so I can try going there sometime soon. I know they carry GF pasta but I'm not sure if it's just rice or what. I'm going to have to read labels even more carefully now that I'm trying low-FODMAP! I know the main parts of it are no onion, no garlic, and no fructose. Fortunately I saw that dark chocolate is still allowed. I need some sweets in my life and dark chocolate is my favorite so that's good!
09-04-2016, 08:15 PM   #172
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Enjoy life foods makes a dairy free dark chocolate bar
http://enjoylifefoods.com/our-food/c...ark-chocolate/
09-04-2016, 08:42 PM   #173
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There's a Swiss chocolatier near here and they make the most wonderful dark chocolate truffles and pralinés. That's definitely going to be my treat to myself once I can eat fairly normally again. They're expensive so I can only afford to eat one per day at most, so that shouldn't throw my guts off too much even if it does contain any sneaky high-FODMAP ingredients.
09-05-2016, 07:22 PM   #174
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Still doing okay here. Tomorrow I'm going to make myself some jello. Wednesday is the day that I start introducing foods. I have some broth and I got myself a cute new mug to drink it out of. Still not working, but getting stronger and hopefully will be back to work soon. I have been walking as much as possible - today I walked around 3 stores and also around the block with my dog. I've got just over 4,000 steps for the day on my fitbit which is the most I've done in weeks! (For comparison's sake, yesterday I walked around the block and around one store and I had 2,200 steps for the day.)

I'm getting excited for eating again, even if it's just broth and jello to start with. I have a pile of tummy-friendly foods ready to go and a shopping list for more (I need to get eggs, almond milk, and a few other things). I'm feeling good, like I'm ready to eat again. I just hope my guts are on board.
09-05-2016, 09:26 PM   #175
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Not sure if peas are fodmap safe
Ds tried ripple original
Yellow pea milk
Sounds gross but
Protein and basically tasteless so great on cereal
Similar to real cow's milk
He thought almond and all other but milks tasted like vitamin water on cereal
09-06-2016, 07:37 AM   #176
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Pea milk sounds pretty bad. I've done plenty of almond milk in the past - I had recently switched to cashew milk, but it looks like cashews are not FODMAP safe, so I'm going back to almond milk. The Silk brand tastes pretty good and doesn't contain carrageenan so that's what I'm going to go with. I've been lactose intolerant since I was 20 so I'm pretty familiar with all the various milk substitutes at this point.

Got some good news this morning! My short-term disability pay was finally approved, so I get paid for the time that I've been off of work. That's a relief. I mean, I figured I'd get approved, but they were kind of dragging their feet on it. Now I can relax a bit more.
09-06-2016, 07:43 AM   #177
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Pea milk sounds pretty bad. I've done plenty of almond milk in the past - I had recently switched to cashew milk, but it looks like cashews are not FODMAP safe, so I'm going back to almond milk. The Silk brand tastes pretty good and doesn't contain carrageenan so that's what I'm going to go with. I've been lactose intolerant since I was 20 so I'm pretty familiar with all the various milk substitutes at this point.

Got some good news this morning! My short-term disability pay was finally approved, so I get paid for the time that I've been off of work. That's a relief. I mean, I figured I'd get approved, but they were kind of dragging their feet on it. Now I can relax a bit more.
That is great news, Cat.

09-06-2016, 07:54 AM   #178
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Thanks, Ron. They're paying me short term disability thru Sept 13th so I just have to get back to work by the 14th. I think I can do that. Every day I've felt a little bit better, even with tapering my pred down (I went from 40 mg to 35 and now to 30 and still doing okay). The big test will be when I start introducing foods, tomorrow. If I can manage to eat without too many issues then I'm sure I can get back to work by the 14th.
09-06-2016, 10:53 AM   #179
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Today seems to be the day where everything goes smoothly. I am almost out of pred because my taper ended up being extended (per my GI, I stayed on 40 mg a few days longer than originally instructed, and I'm tapering by 5 mg at a time instead of by 10). So I currently have enough pred to get me through tomorrow and that's it. Was slightly worried about that. Called my GI's office first thing this morning and left a message saying I need more. It's not even 3 hours later and there's already a refill waiting for me at the pharmacy. Phew! Between getting more pred and getting my short term disability approved, it's already a good day.

I just have one thing left on my to-do list and that's to get ahold of a lady at work with some questions about paperwork for the time that I've been off of work. I left her a voicemail so hopefully she gets back to me soon. Aside from that, I just have to pick up my pred and make my jello for tomorrow and I'm set! Things are coming together!
09-06-2016, 03:16 PM   #180
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Ohhhhkay. So, I apparently totally lied earlier when I said everything was going smoothly. I went to get my pred and also to get more broth - the broth I bought earlier has onion in it. I went to the grocery store and got my broth, my car was a little funny about starting as I was leaving the grocery store but I figured maybe that's just because it was so hot out today. I stopped at the bank to deposit a check before going to the pharmacy to get my pred... and my car wouldn't start. It died in the bank parking lot. Dead, wouldn't turn over, wouldn't even try to start. Ughhh.

So I called a tow truck and waited a long time for it to come and had it towed to a garage. They looked at it and it's the starter and going to cost like $400 because my car is Japanese and apparently the starter is Japanese and is out of stock across the entire state and they have to special order it from Illinois. Double ugghhh. It'll be fixed tomorrow. And now I get to use the money that my parents gave me for Vivonex, to pay to fix my car. Sometimes when it rains it pours! I am not happy. Oh, and I left my onion-free broth in the car. Of course I did. So tonight hubby gets to take me to pick up my pred. I'm just going to drink the *$%#^ onion-containing broth tomorrow, I don't care anymore, I'm just done with this day.

I'm trying to be positive though. My car is 15 years old and the starter lasted that long, and I wasn't in a rush to get anywhere and I was in a safe place (they let me hang out in the air conditioned bank until the tow truck arrived). So there's that. It was still a pretty crappy few hours there, though, with waiting for the tow truck and waiting for my car to be assessed at the repair shop. I didn't have any Vivonex with me so I got really shaky and hungry. Now I have to kind of guzzle Vivonex for the rest of the day to make up that deficit. Fun.
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