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


 
08-29-2016, 02:20 PM   #121
Cat-a-Tonic
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Yes, at my last scope a few years ago I made sure they checked for mastocytosis.

Yeah, I know there's other things it could be. We've ruled out a lot of the big ones, but I know it's probably impossible to rule out everything it could be. It's always "fit" IBD and it's always responded to steroids (including Entocort up until this flare).

Would rheumatic conditions show up in my ANA? I've had it checked in the past and it was always normal/negative.

I'm just sort of lost in this flare. It's worse than any flare in the past and it didn't respond to Entocort. That's new and scary. I've had this IBD or whatever it is for nearly 7 years now and it's scary that it still has surprises in store for me. I'm still in panic mode, clearly.
08-29-2016, 02:22 PM   #122
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Basically we have been in a holding pattern
All tests are normal except Mre showed some thickening but since his pill cam and scopes were normal - nada
They looked at
Pancreas
Liver
Stomach
Gallbladder
Lyme disease
Infectious disease
Immunodeficiency

Still doing MCAS urine testing
But nothing has come back with answers
Just that Ds does better on mostly formula diet and in particular elemental formula

Hope you get more answers
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08-29-2016, 02:36 PM   #123
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MLP, my heart goes out to you and your son. I've said it before but I'm a 36 year old woman and I can barely handle this situation - I can't imagine being a child and feeling like this. I really hope he gets some answers and starts doing better, soon.

They've looked at a lot of those for me, as well. My liver, when I first was ill, it had some weird nodules on it ("focal nodular hyperplasias") but they've since disappeared and apparently that wasn't related in any way to my digestive issues. Pancreas seems fine, liver is now fine, gallbladder seems fine. Stomach has recurrent gastritis thanks to my GERD but is otherwise apparently fine. They've checked me for Lupus, Addison's, RA, many others I'm not remembering right now. It's definitely frustrating when nothing comes back with answers.
08-29-2016, 03:00 PM   #124
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MCAS and mastocytosis are different, I think.

You could have a negative ANA/RF and have RA. You can have completely negative blood work (low CRP/ESR) and have SpA.

With SpA, mild gut inflammation is common and goes away once the SpA is treated. Symptoms are typically morning stiffness, lower back or hip pain and pain that gets better with movement and worse with inactivity. Really any joint could be involved (though SI joints/hips are most common).

I hope the EEN + Prednisone will help. Entocort sometimes does not help depending on where the inflammation is and if it's severe. It usually helps for inflammation in the TI/ascending colon. Since your scope didn't show that, it makes sense that it didn't help.

If you have inflammation in your jejunum for example (where a scope can't reach), Entocort wouldn't help with that either. But Prednisone definitely should help with that and so will formula.
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08-29-2016, 03:19 PM   #125
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MCAS and mastocystosis are very different
The link to the slide eventually explains the difference I understand your frustrations and hopefully yours is a one of event
08-29-2016, 05:18 PM   #126
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I'm getting nervous because I don't know if the pred is helping enough. Although it has only been 4 days on pred. It's hard to say. I'm still having some mild abdominal pain & cramping and I've had 4 episodes of d today. I just don't know anymore. In the past, I've only ever been on really short bursts of pred, but it always helped right away. Like, I feel like I should have a ton of energy and a huge appetite and feel a lot better right now. Not so much.

But, on the other hand, I can sleep which I couldn't do when I was on the Entocort (the cramping/pain would wake me up) and I was having sometimes 20 bowel movements a day before the pred. So it probably is helping. I just keep second guessing myself, I don't know.

I don't think I have SpA, I don't experience stiffness in the mornings. I do get hip pain and I have some type of hip arthritis (GP thinks osteo, rheumy thought inflammatory). The triggers for it are mainly high impact exercise (jogging will put me in hip pain for days) and weather (snow, bitter cold, and sometimes rain will set it off).

Okay, so that link about mast cells, there's like 153 pages there and it overwhelmed me (everything is overwhelming me lately!). Can someone boil it down for me?
08-29-2016, 06:21 PM   #127
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Sometimes pred has been miraculous for my daughter -- other times, it takes a while. But with IV steroids + pred, I'd expect you to be much better already . 40 mg is a pretty standard dose for IBD (and considered pretty high for inflammatory arthritis).

I don't know enough about mast cells -- my little penguin will have to fill you in.

They did test you for CDiff -- right? It took two tests (two weeks apart) before my kiddo's test was positive. The watery diarrhea 20 times a day really sounded like CDiff.

Those triggers for arthritis are pretty standard - could be osteo or inflammatory. If it's not really bothering you and you don't have morning stiffness, I wouldn't bother investigating.
08-29-2016, 06:25 PM   #128
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Another thought -- what if you need a different maintenance medication? If it is Crohn's, a 5-ASA will not do much. There is pretty good evidence that shows that. You'd need an immunomodulator like MTX or 6MP.
08-29-2016, 07:20 PM   #129
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Yeah, they tested me for c diff, salmonella, campylobacter, basically all of the major bacterial infections. All negative. I can ask my GP about it tomorrow. The diarrhea has slowed significantly (today I'm up to 4 times) and far less watery. But it is still there. And it is disconcerting that I'm not more improved on 4 days of IV steroids and 4 days of 40 mg pred. Either it's the most stubborn flare ever or it's something else/more going on.

I'm sure that Lialda isn't the best maintenance med for me and I do probably need something stronger. That's a road block that I've run into from being undiagnosed, though. My GI is fairly confident that I have IBD, but he is also hesitant to use the heavy duty meds on a technically undiagnosed person, so mesalamine is basically all he's willing to offer me for maintenance. I don't know if I can convince him that I need something stronger now that I've had this flare. I can try.

I've had a symptom which is interesting. So back in 2009 when I first got sick, that's when I first started having migraines. Never had them before in my life. And they'd always start with an aura, always on the right side, and then the head pain and nausea would start maybe 15-20 minutes later (it was never super severe head pain or nausea, it was always tolerable) and also sensitivity to light & sound. My GI put me on amitriptyline 25 mg and that basically stopped the migraines, I'd get maybe 1 every couple of years (rather than 1-2 per month).

So, fast forward to this year. I went to Japan in April and I got a migraine aura my first full day there - but no head pain, no nausea, no actual migraine following the aura. I figured it was just because the timing of my amitriptyline was messed up (I take it at bedtime but bedtime in Japan is 14 hours different than what it is in the US). Well, just last week, in the hospital on Friday a few hours before being discharged, I had another aura, but once again no actual migraine accompanying it. Today, I've had 2 auras which I've never had before. That's super weird. I had one on the left side a few hours ago, and just now I had one on the right side. I don't know what's causing this - I presume it's a flare thing since migraines came into my life along with IBD? Or maybe it's that my body is getting a ratio of vitamins that it's not used to from the Vivonex and that's doing it? Or is it the pred? I really have no idea. Nothing in this flare makes any sense to me, I'm just lost.
08-29-2016, 07:25 PM   #130
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Pred gives Ds horrible migraines especially during weans
Sorry things are as clear as mud right now
08-29-2016, 07:44 PM   #131
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It could definitely be a pred thing, although I don't start to taper until Wednesday. And I was wrong, that 2nd aura did bring some head pain along with it (tolerable, not shattering pain).
08-29-2016, 09:27 PM   #132
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But going from iv steriods to oral steriods is a taper
Add in for Ds at least the higher dose steriods just lots of migraines .

Did they at least give you rescue meds for your migraines ?
08-30-2016, 08:45 AM   #133
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That's true about tapering when coming off of IV steroids, I didn't even think of that. That would make sense, too - my last day of IV steroids was Thursday, I switched to oral pred on Friday, and Friday I did have a migraine aura.

No, I have no meds for migraines. At one point they tried me on generic Imitrex, which did take away the initial migraine, but then it gave me a rebound migraine the following day. And that was the only med they really tried on me, so now I just sort of deal with migraines and take zofran for the nausea and that's it.

Can I ask, did EEN give your son a lot of gas? Yesterday I had 5 Vivonex, which is the most I've had in a day (I was doing 3 a day up until yesterday). And I felt so bloated, full, distended, gassy at bedtime yesterday. I didn't look distended but I sure felt like it. This morning I feel much less gassy/bloated and I actually had what appeared to be a somewhat formed bowel movement first thing this morning. So hopefully the gassy feeling was just my body adjusting to getting more Vivonex than usual.
08-30-2016, 09:10 AM   #134
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Yes gas is normal with een while the good bacteria gets built up so to speak
It does lessen
It also gives you bad breath and gunk on your teeth/tongue that's hard to get off
Make sure to chew daily - either a chewy stick or crushed ice so you keep your jaw muscles strong
Ds started een again today
Something he ate triggered horrid abdominal pain /feeling like he will vomit so
Trying a reset for a day or two
08-30-2016, 10:15 AM   #135
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Cat,
I found that if I diluted the Vivonex with 50% water they were easier to drink and I had less abdominal distension from them. Of course then you need to drink more to get the full allotment in. I was on the powdered VivonexPlus and I just used more water when I mixed it.

It took me quite awhile to achieve remission on EEN--four months. Since you are doing EEN anyway, you may wish to look at Dr. Hunter's program from the UK where you do a full elimination diet when you begin eating again. It is not an easy thing to do and you must make sure that you keep track of your intake and continue to supplement with the EN until you have a full solid food diet.

Here is some good info about it: http://nutricia.co.uk/e028/uploads/L...Diary_Full.pdf
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08-30-2016, 10:17 AM   #136
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And Cat here is info about using partial EN with the above exclusion diet in children. There are forum members whose children have used or are currently using this approach.
https://www.researchgate.net/publica...hn%27s_Disease
08-30-2016, 10:59 AM   #137
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Oh yeah, I've definitely noticed my breath being terrible and my tongue getting coated with white gunk from the Vivonex. And the pred is giving me terrible dry mouth so my mouth is just a mess right now. I will make sure to chew on crushed ice. My dog loves crushed ice as well so I will have to share some with her but that's okay. I feel like I've been a really bad dog owner lately, I don't have nearly enough energy to even walk her around the block, so anything I can do to make her day more fun is a good thing.

Happy, I will look into the elimination diet. I've been tentatively thinking that I'm going to do low FODMAP once I start introducing solid foods again, starting with the really bland stuff like plain rice. I'm not very familiar with the elimination diet so I'll look into that as well.

I see my GP in a couple hours and I think I'm going to beg for a longer pred taper. My guts feel fairly rough - after my sorta formed bowel movement this morning, the cramps came on and I had a couple of very watery bowel movements. Ugh. I'm just not ready to taper, I don't think.
08-30-2016, 04:05 PM   #138
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How'd the appt. go Cat?
08-30-2016, 05:34 PM   #139
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It went about how I expected. He's conferring with my GI, trying to get my GI to order the MRE. He doesn't think infection - he said they tested my white & red blood cell counts several times while I was hospitalized and it was always normal, so he doesn't feel re-testing for c diff or anything else is worthwhile. He thinks it's just a nasty flare that for some reason isn't responding super well to the pred. He's going to ask my GI about possibly extending my pred run, I told him I don't feel ready to taper.

He did mention Humira which I found interesting. He thought it might help me. But then we both agreed that my GI would never put me on Humira without a very firm diagnosis.

I also asked him how long I should be out of work, and he said a minimum of another 1-2 weeks. I know my boss wasn't happy to hear that but I'm relieved that I get some more time to rest and recover, I feel like I really need it.

So yeah, he's conferring with my GI and I should hopefully get a call back tomorrow. If the MRE can't be scheduled, like, immediately, then I don't think it's worth having it. I'm just going to try tapering my pred tomorrow and let him know how I'm doing when I get the call back.
08-30-2016, 05:43 PM   #140
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I'm glad he's going to talk to your GI. Unfortunately, I agree, it will be close to impossible to get Humira without a diagnosis, because there would be no way to justify the cost to insurance if they have no evidence of inflammation. Plus, if you don't have Crohn's, it could make you sicker.

6MP or MTX might be easier to get since they are cheaper. But again, without a diagnosis, I think they also might be hard to get because they are immunosuppressants.

I hope he can get an MRE scheduled, though I wish they had been able to do it before giving you Pred and IV steroids because then you might have gotten a diagnosis.

I hope you start feeling better soon .
08-30-2016, 05:45 PM   #141
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Agreed

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08-30-2016, 05:45 PM   #142
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Have you looked into the NIH undx program ???


https://www.genome.gov/27550959/undi...s-network-udn/

Might be worth it if they think it's something that can be figured out
08-30-2016, 06:15 PM   #143
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MLP, I haven't heard of that program. Unfortunately though there's not a testing site anywhere near me, the closest one is like 12 hours away.

I think I might have finally turned a corner in this flare. This evening, I actually feel... hungry? Like, I would kill for a pizza right now. It would probably in turn kill me right back though. I'm sticking with EEN, it just suddenly got a bit more difficult. I haven't had an appetite in weeks so it's really weird to actually feel hunger. Maybe this is the pred finally kicking in and/or me finally healing up from the Vivonex?

I don't think the MRE is happening. If I am finally healing then there's no point.

Speaking of meds, I wonder what the odds are that my GI would be willing to try me on LDN? I seem to recall reading that it's got a very low risk of side effects. Like, it could help and probably wouldn't hurt. I don't see my GI for 2 weeks so I am just sort of starting to brainstorm ideas of what to ask him about. I don't think he'd do a biologic and probably not an immunosuppressant either, but maybe something like LDN?
08-30-2016, 06:36 PM   #144
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LDN is a good idea!! Forgot all about that.

The other thing you could do is try a different formulation of mesalamine. If I remember correctly, Lialda releases in the colon and is used mostly for ulcerative colitis. So if your colon is ok, it won't really help.

But Pentasa is released in the small bowel and colon, so that might work better for you. It is also used more for UC (all the 5-ASA's are) but our GI also uses it for Crohn's (with other meds like MTX/6MP or biologics).
08-30-2016, 06:46 PM   #145
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I've already tried Pentasa, and it didn't work great for me. I really do think I have involvement in the TI and colon as that's where I feel the majority of my symptoms. Asacol (the regular one where it was 6 tablets per day) kept me in remission for a couple years, but then they stopped making it. My GI tried me on Asacol HD, but my body couldn't break down those 2 giant horse pills so they just passed through me undigested, and I ended up falling out of remission at that point (this was in like 2013). I then tried Delzicol but that was also hard for me to break down, because it was essentially Asacol tablets inside of capsules (seriously) so my body had to work hard just to digest those. Then I tried Pentasa and that was so-so. Then Lialda and that's been working fairly well up until this flare. So yeah, I think aside from Apriso, I've tried basically all the mesalamine formulations at this point!

Oh good, I don't know much about LDN but it's encouraging to hear you say it's a good idea. I will make sure to do more reading up about it so that I can really pitch it well to my GI in a couple weeks.
08-30-2016, 06:56 PM   #146
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I don't really know a whole lot about LDN since pediatric GIs tend not to want to prescribe it. There are also plenty of adult doctors who refuse. I have heard some parents say it only works for mild IBD.

But you should really check out the LDN thread - the people there will know best. We did not want to try it because there is not a lot of research on it and the research there is was kind of mixed (or at least, it was the last time I looked). But it's worth looking into since your options are limited.
08-30-2016, 09:58 PM   #147
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I will check out that thread. I have no idea if my GI will be on board with LDN or not, but I guess the worst he could say is no. And hopefully he'll have some other ideas too. He's well aware of my situation, I've been keeping him updated via email and all the doctors I've seen have also been updating him (they're all within the same medical system). So hopefully he's already also been thinking about my situation and what meds I should be on.
08-31-2016, 12:37 PM   #148
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Ugh, taper not going great. Watery d is back (it was semi-formed, like little pieces, prior to today). And I'm having a bunch of LRQ pain. Called my GI's office to ask about going back up to 40 mg. His nurse is going to track him down and ask him and call me back (meanwhile, I still haven't gotten a call back from my GP). Supposedly my GI is in procedures all day so he's not going to be easy to track down. Fun.
08-31-2016, 03:16 PM   #149
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My GI just called me. He's trying to schedule the MRE ASAP, I expressed my concerns about the pred possibly masking things that could be seen on it and he definitely agreed that I need to have it done right away. He's also trying to bump up my appointment to be sooner than Sept 14th. And, he said I can go on 40 mg of pred. He said I probably shouldn't be on that dosage for more than 7-10 days (I was on it for 5 days, I just took an extra 10 mg to make today day 6). I'm going to keep in contact with him to let him know how it's going and to find out about the MRE. I was really glad he called, he's definitely concerned that this is obviously the worst flare I've ever had yet nothing has shown up on any of my tests/labs. He sounds pretty determined to get to the bottom of things. And he mentioned the possibility of other meds as well but didn't mention anything by name. When I see him I'm going to bring up LDN for sure.
08-31-2016, 06:01 PM   #150
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Glad you have a plan!! Sounds like you have a great GI.
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