Weaning Pred and flare up!

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GwensMom

GwensMom

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Mar 18, 2015
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It has been a while since I've updated as things have been pretty hectic here still. The last I time I was here I thought we were on the road to Remicade. I'm not sure exactly what happened, but we never got a call for Remicade and at our last doctor's visit they informed us that Gwendolyn's blood tests came back perfect and looking great. There were no signs of inflammation in her blood work. They did a quick Fecal Occult test in the office and proclaimed that there was no blood in her stool! They told us to start weaning her off the prednisone.

Now personally I don't think she has ever reached remission. She was still waking with night time bowel movements and still randomly seeing blood in her stool. I voiced these concerns, but they told us that it was probably due to...constipation?! How can somebody who is running to the bathroom 3 to 4 times a day be constipated???

Anyhow... I went along with it. We started weaning off prednisone. After only weaning her off 10mg though she is now back into a major flare. We re-upped her dose of pred, but it doesn't seem to be helping at all. I put a call back into the GI (who assured us that at the first signs of trouble they would put her onto the remicade) and now they want to run all sorts of tests again. All sorts of stool tests and blood work. Why are they testing her for all these things again (ie: parasites, cdiff etc.) when we know what is wrong and that the weaning is causing the flare up? It is driving me slightly crazy because we are having a pretty hard time collecting samples to fill one little test tube let alone 4 or 5!!!

I'm extremely frustrated and feel like there is an under laying reason why they didn't put her on the Remicade to begin with. I'm suspicious that my insurance company told them they wouldn't pay for the treatment until they tried to wean her off the pred first. I honestly feel like we are right back to square one and now even the pred is not working.

Has anybody else had this much trouble with pred weaning?? Any tips for getting her back into a more comfortable state?
 
Oh man...your post gave me PTSD! WE had a devil of a time trying to wean off prednisone and that was with Remicade! Every time we stepped down even the slightest bit, symptoms would return. This went on for 4 months. That is when our doc declared O steroid dependent and said it was time to add an immunomodulator. I didn't want to do that so we tried a course of EEN and I'll be darned that worked like a charm! But O was already on a maintenance med. For some reason I can't see if G is on a maintenance med.
 
Oh I see it now...Pentasa...hmmm...Pentasa doesn't have a good track record with Crohns...especially in kids..better with UC but perhaps not enough for G. Even if your insurance is requiring the fail of other things prior to Remicade there is still the whole class of immunomodulators that could be tried. I would be curious to know what your docs next step is...seems to me that there should be a change to the plan.

BTW - with my other daughter, T, we are having to fail Methotrexate before stepping up to biologics. We just added steroids to see if that helps get her inflammation under control (we induced remission with EEN but Mtx couldn't hold her there). when she comes off, if inflammation isn't gone or returns we will be stepping up....I hope anyway.
 
When my son was on Prednisone, our GI did a very slow wean. I mean the weaning itself took 3 months. He was on MTX during this time as well.

Has your GI confimed a diagnosis of Crohn's? Why all the retesting if the diagnosis has been confirmed?
 
Things are not looking good. She has had next to no sleep last night and has been in the bathroom all morning still. She vomited once and is now afraid to take her medication. I had an old prescription of Zofran from the last time she vomited and gave her one of those in hopes of at least getting her to take her prednisone. I have also put in yet another call to the GI and I'm waiting for a return call.

crohnsinct - I'm pretty sure she has become dependent as well. She has been on 40mg of pred. for 4 and a half months now. I was also told that EEN doesn't work for UC patients... I'm doing more research on that though because at this point we will try anything just to get her feeling better and with all the drugs and things she is taking it would be nice to find a gentler way to help.

As for the Pentasa, I don't think it has helped at all really for her. In fact I think she actually started getting worse again once she started it. She was doing really well on just the pred when we left the hospital and for the weeks leading up to starting the Pentasa she was great! Only one early morning BM, no blood, and no pain. Once she started the Pentasa her BMs became more frequent again and she started seeing blood again. Also... they upped her dosage of the Pentasa as well because she gained weight. Typing this all out has got me thinking that perhaps that might be her problem all together. I'll run it by the doctor.

CrohnsKidMom- We were taking weaning slow.. or we thought we were. We decreased 5mg the first week then another 5mg the next week. We only got her down to 30mg before she started flaring again. The only other medication for her UC that she is taking is Pentasa and like I said, I'm starting to think that might be part of the problem. They keep waiting and wanting it to work for her, but it just isn't.

I too am baffled at the retesting. I'm sure they want to rule out that she hasn't picked up something else, but one would think if she was "fine" only 3 weeks ago when we were in the office and we started weaning off the pred and she now is flaring that it would be a no brainer as to what is going on.

I'm also sure that it doesn't help that it is a team of doctors that are involved. The person who called me back last time and ordered all the tests was not the doctor we normally see. She may have just skimmed over the notes as to why I was calling and not really looked at her chart.

On top of alll this my husband is set to have surgery in 10 days to get a solid mass removed from his kidney that they believe to be cancer. He was finally able to get a sleep study and was diagnosed with sleep apnea. He got his cpap machine and was cleared to go back to work and to drive by his doctor, but because he lost consciousness behind the wheel the DMV has deemed him unfit to drive and have suspended his license until he has been on the sleep machine for 6 months. I am the only driving adult in the house and have been driving him too and from work each day. If Gwen has to go back into the hospital I'm not sure what we are going to do as it is 2 hours away. I'm just in a panic and am completely stressed out. Ugh!!!
 
It is pretty standard to do stool and blood tests when kids flare, to see if the symptoms are caused by infection. That said, it seems pretty clear that Gwen's problem is from tapering Prednisone, so I can imagine why you're frustrated.

Have you thought about getting a second opinion? Sometimes a second set of eyes can really help.

Really hope all goes well with your husband. Hang in there!
 
Yeah that ^^^^
Even when Ds was checked a week before as part of his std bloodwork
They still automatically order blood and stool test - easy box to check off
So they know it's the ibd
Ibd kids are extremely suspectible to c diff etc so that is part of it
The first year was extremely frustrating for Ds
But then we found the right med for him .
Good luck
It will get better :)
 
Goodess, you have a lot on your plate. I hope that return call comes in soon and you get some questions answered. I hope your husband's surgery goes well also. Keep us posted.
 
Well we got a return call at about 7pm tonight. Basically they want me to bring her to their ER that is 2 hours away. I can't make that trip tonight as I have to make arrangements for my other children first.

On a better note, Gwendolyn did finally get her pred into her system and she took a long nap. I however could not get her to take her Pentasa. She mixes it into pudding to take it because she can't swallow the pills and her stomach was just not having any of it. After she woke up though she felt sooo much better. She went hours without pain or having to run to the bathroom. She ate a little bit of mashed potatoes and then had to go, but even at that she said she didn't feel nearly as bad as she has been, the bm was slightly more formed.. not just liquid and there was no blood!! Better yet.. she was still hungry and had some soup! She has made two trips to the bathroom to actually only pee!!!! Could missing a dose of Pentasa produce such a huge difference in just that short amount of time if it was indeed what has been causing her so much trouble? It is crazy the turn around she has made in just those short few hours without it in her system. I'm almost afraid to make her take her night time dose.
 
So sorry to hear about all this--that's a lot to handle.

I don't know enough about Pentasa to answer your questions, but at minimum, it does seem like the Pentasa isn't enough, and that Gwen needs a new treatment plan.

I'm glad to hear that she was feeling a little better this evening, and I hope her doctors can figure out a new plan soon. I hope your husband's surgery goes well too.
 
At this stage it would be important that she take the pred of a taper must be used with the med. What dose of pred is she on?
 
I know things are tough for you right now
But honestly they expect you to figure out a way to get her there

if they are telling you to bring her to their ER
Usually it's so their docs who know her case can look at her.
Not bringing her in is going against medical advice
Make sure you update them this morning and that she is taking all of her pills
Pentasa can be opened into water or directly into her mouth then drink quickly afterwards
Do not stop any meds without your doc knowing it
Has she tried to learn to swallow pills ???
Ds had to learn to swallow pentasa at age 7
So I know it can be tricky but after a few tears and two weeks he got it down.
 
Update this morning!

Gwendolyn slept a full 8 hours without waking to use the bathroom. Upon waking she did have to use the bathroom right away. BM was once again more formed and but there still seems to be a little bit of blood in her stool.

We are going to get her out to the ER today. Last night was just not possible as they called me so late and there was no time to make arrangements for my other children. As my husband can't drive at this point in time and we live in a pretty small town with no public transportation we also have to make arrangements to get him back and forth to work and for daytime care for the other kids while he is at work. He is the only working member of the family and he has already used all of his vacation days because of all the problems and difficulties we have been having. I also am not a confident city driver and I will have to make the trip alone. I'd rather do that in the daylight hours rather then at night as well.

We have been working on swallowing down pills... but she has even the hardest time still with only normal sized capsules. We have to put them all in applesauce for her to swallow them.

Catherine - right now she is back on her full dose of Pred which is 40mg. She missed a dose of her Pentasa which I have read is ok to even fully stop (with doctors consent of course) cold turkey. We are still giving it to her, but she did seem to feel and do a whole lot better during the time it was not in her system.
 
Your doctors were correct in wanting to see if Pentasa alone could maintain remission after Prednisone tapering. This is classic approach. It can take time to find the right medication for a patient who has IBD. And in between medications trials, prednisone is often needed.

Unfortunately for G, Pentasa seems clearly useless at this point. relapsing on 30mg of pred calls for bigger boost of pred, like a 50mg regimen or more in hospital setting to really try to kick the disease back. Definately I think another big med needs to be put in the mix, immuno-suppressor, such as Purinethol , Imuran, methotrexate or Biologics such as remicade or combo of both.
Your Dr is also right about UC and liquid enteral diet, long term litterature says it doesnt help fight inflammation in UC. wishing your family well.
 
Just checking in on y'all.

While I totally agree that you need something more powerful than Pentasa, I am wondering if it isn't the Pentasa per se that caused her increase in symptoms as much as the prednisone taper...hard to flush that out as they happened at the same time....not that it even matters anyway because if Pentasa were working she should be able to taper the prednisone without such an awful affect.

Yeah I have read about EEN and UC...it isn't that is is totally not successful but just much less effective than with Crohns. My daughter has all colonic Cohns and it worked for her and her friend with UC used EEN and it worked or her. But even with that...I think your daughter needs to probably step up:ghug:

P.S. I prefer to drive in cities at night...less drivers!
 
@crohnsinct : the UC friend who used EEN, didnt use any medication at the same time, only EEN to remission? That would be awesome! but a spontaneous remission can never be ruled out, this happens in any placebo arm research. i have reviewed the literature on the subject 2 years ago. and also read book by John Hunter a GI in UK who has been working a lot with EEN and the LOfflex diet. he concludes to the same results after trials on his own patients, EEN works for CD, even colonic, but not in UC and not much in indeterminate colitis.
 
She was in the exact same situation as my daughter except she used Pentasa and my daughter (Crohns) was put on Remicade. They were dx'd at the same time. Both tapering steroids and disease flared back up. We tried EEN first. They saw what happened with O and asked to try it. Her docs agreed and she came to remission and stayed on Pentasa alone for another year. Her docs said the same thing you did. Can't rule out spontaneous remission but they were so encouraged that when she flared again they wanted to try it again. She didn't. They did steroids and again she couldn't taper. She eventually ended up on Remicade and has done very well since. Super odd part of the story is her brother was dx'd in October and my second daughter dx'd in January. What are the odds that two families from the same small church have two children both sets dx'd around the same time. We both have a third child who so far show no signs of disease.
 
Hi! I hope your daughter is doing better. I wanted to say have you looked at the side effect list for Pentasa?
They include nausea, vomiting, diarrhea and stomach pain. Your daughter is not the first I know of who has had worsening of symptoms from the pentasa. I would definitely discuss with the doctor. Sending prayers also for your husband. It sounds like you really have a lot going on. Hope his surgery goes well and they are able to remove everything. Keep us posted on how they both are doing.
 
joining the conversation late...seems others are wondering about the sulfa reaction too. That would be what I would focus on if my kid was in this position.

That being said, my D has had issues tapering off prednisone & never has gotten rid of it in 3 years except for almost 3 months this winter. Try to get off it as soon as it is possible. It is not meant as a long term medication. The longer you are on it the harder it is to get off it. Even on the 10 mg my kid is now on still after her surgery it will take 4 weeks to taper her off it. It sucks.
 
Sorry I haven't updated in a few days... things have actually been pretty good! We never did get to the ER. I ended up talking to a GI on call and told them what was going on. We have stopped the Pentasa for now. G has not had a dose of the Pentasa in a couple days and it is like a night and day difference. She has been able to eat and leave the house. She has been going HOURS between BM's instead of just minutes and is seeing less and less blood in her stool each time. We were able to finally collect samples yesterday and get them to the lab as well as got her blood work done. And last night she actually had a fully formed BM!!! She has not had one of those since diagnosis!!! It is crazy how excited I was to actually see a fully formed turd in the toilet! LOL!

I spoke with the doctor again today and made an appointment for a couple weeks down the road. It was the earliest they could fit us in, but we are on the cancellation list. They also said that the blood work that was done yesterday has all come back looking great. Hemoglobin is up and her inflammation markers are down. They are concerned that perhaps the Pred has just kicked in and started working again.. but even when she was taking the Pentasa and the Pred together before the tapering she was never feeling this well. They would like us to try and taper the pred again to see what effect that has on her... I of course am skeptical because she will not be on any maintenance medication. It seems odd they would want to taper her without any other medication to keep the inflammation in check in her system. We will see how it goes though I guess. I am predicting that she will indeed need to be put on something else. I'm just not sure what the next step will be now.
 
great news! have you considered trying a dietary approach? this may be a chance before prescription of a big drug, as you have GIs of the ''observer'' type, you've got some time. Check out IBD-AID in my signature if it interest you!
Spontaneous remission or maintenance of remission after prednisone or other treatment are always possibilities, my first GI was long term experienced and was clearly liking to observe before moving on to a bigger step. he has never been in a rush, eventhough my case was moderate to severe (III/III on occassions). he offered me really tight monitoring, so we could calm down flares very rapidly. I now know im not the type of spontaneous remission, but I belive treating with different light approaches and observing was the right thing to do in my first year and half before moving on to immunomodulators.
 
I am so glad she is feeling better! I agree with you on the leaving her unprotected. Seems to me that any of the next level drugs will take time to build to therapeutic levels so you would want to start them while still on a good amount of prednisone. I am not good at waiting and doing nothing so I would at least try the diet approach while waiting but it could be a big shift in how you eat and with all the other things you have going on I would understand skipping the extra stress of changing diet.

Sending lots of hugs your way for the next few weeks!
 
I am of the opinion that she should be on a maintenance med, but maybe the GI is waiing to wait to confirm the symptoms she had were indeed from the Pentasa, or to confirm they are not from the disease itself. I don't know. I would ask for their reason for waiting on a new maintenance med.
 
Thanks so much for the support and suggestions! I love having a place to turn to when things get rough...I'm just sorry that there are so many out there that are dealing with the same things we are.

I will look into the diet and while it might be a lot to handle a change that big right now it may be worth it and beneficial to the whole family.
 
I think the thing I am most concerned with is that the Pentasa was actually helping with the inflammation, but the side effects were causing the flare like symptoms. So while it may have been beneficial for her disease to be on it...it wasn't improving her quality of life any.

I went back and checked my previous posts and it appears that before she started taking the Pentasa and was only on the Pred she was doing very well. With the start of the Pentasa her symptoms did start to return and I even questioned it back then.

Could the Pred actually be what is keeping her inflammation down? It seems crazy to reduce that. My way of thinking is that of course she will flare up again because then she will not have anything else in her system to keep the disease in check so it won't prove one way or the other if it is the Pentasa or not.

Hopefully the office will call us back with a cancellation so I can get all these questions answered and we can get it all figured out for her. I was hoping that this summer would be her getting use to being on Remicade so she could start the new school year off on a good note and without worry. We have discussed homeschooling, but G really doesn't want to do that unless it is absolutely necessary.
 
Sorry you are going through this struggle. Yes, the prednisone should be reducing the inflammation, which is why she is feeling better while on it. But, it is a short term med, which is why there is a need for a maintenance med. I would have the same concern, that once she is done the prednisone her symptoms will return. I hope you get that appointment soon and get your questions answered. Take care!
 
Prednisone would indeed be keeping the inflammation in check but has been said they need to get your lass off steroids and onto the meds that are steroid sparing and as you are thinking, do it now whilst she is still on the Pred. :ghug:

Dusty. xxx
 
Just wanted to post a little update! Gwendolyn has been doing really well since we stopped giving her the Pentasa. *knock on wood* We have not started weaning off the pred just yet because I didn't want her having problems while I was in the hospital with my husband and unable to be home with her. We have not seen her GI yet because they could not get us in, but there was finally a cancellation and we are set for an appointment this coming Monday. I'll be interested to see what they say about the Pentasa situation and to see what they are going to try next for her. She has not seen any blood in weeks now and she is only going #2 once a day or once every other day. It has been a total turn around and I'm still quite amazed.

My husband had his surgery on Tuesday the 4th of August. They pushed it back a week so we had to work around that when scheduling other appointments. All went well and after two nights in the hospital with him I'm finally back home. The doctor said that they took out the whole tumor with out any problems and that if it is cancer then he is basically cured and will not have to have any chemo or treatment other then regular check ups and scans to make sure nothing else pops up. We go in for a follow up on the 12th for him!
 
So glad that your husband's surgery went well, and that Gwen is feeling better. Hope that your husband's recovery goes smoothly and that Monday's appt with the GI goes well.
 
Such great news about your husband! You must be so relieved. I hope he has a speedy recovery.

Glad your daughter is feeling better, and you were able to get An appointment for next week. Keep us posted on what the GI decides to do for her ongoing treatment!
 
So great that Gwen is doing well! Hope the appt. is helpful.
Hope your husband recovers quickly :ghug:
 
So good to read your positive update GwensMom and so very happy for you! :ghug:

I hope your husband’s recovery is a speedy and uneventful one and he goes from strength to strength. :heart:

And so fab to hear your lass is feeling much better, bless her. Good luck for Monday! :goodluck:

Dusty. xxx
 
Another update! We saw the GI on Monday of last week and they agreed that we should probably try to wean Gwendolyn off the pred, but they have also agreed that she needs to be on something to keep the disease in check. We are moving on to Remicade. I got a call Friday saying that it was already approved by the insurance so I will be calling the infusion center tomorrow to set up her loading doses. We started weaning off pred again today in hopes that we can get her down to a lower dose even before the Remicade has kicked in.

I'm happy to be moving in the right direction again, but worried about how the new medication is going to effect her. She has been doing so well on just the Pred for the past few weeks. I know she can not continue only on them, but I'm nervous that things are going to go all haywire again. It has been nice to be able to just take a few pauses to actually allow her time to enjoy some of the summer without having to worry about being too far from a bathroom or feeling ill. I hope that the Remicade will allow her to continue on this path without adding more trouble to it.

My husband also had his post op appointment with the doctor this past week and we got the result from the pathology on the tumor they removed. It turns out that the tumor was benign!! Both the doctor and ourselves were quite happily surprised! We are so relieved and it is one less thing we need to worry about now. Thank you eveybody for the well wishes of a speedy recovery for him!
 
Glad you have a plan to move to remicade
Typically you don't start to wean until AFTER you start remicade so you don't flare before remicade can kick in
It takes 6 weeks to kick in
 
My daughter loved Remicade. She did great on it - no side effects besides being a bit tired the day after the infusion. No increase in infections or anything like that.

She did also stay on steroids for the first couple months on Remicade while waiting for it to kick in. Some kids do respond immediately, but others like my daughter, take time. It took a good 4 infusions before we saw a big difference.

Good luck! Great news about your husband!!
 
So happy to hear the happy report on your husband! That must be such a great relief!

My 10 yo son started Remicade this summer and so far he is doing well on it. I hope your daughter does well on it too!
 
Very glad to hear about your husband that is wonderful news!
Remicade has worked miracles for a lot of kids. Hoping your daughter will be one of them!
 
We are starting remicade today! I'm a ball of nerves, but Gwen seems to be doing well. We just started the infusion and are hoping all goes well with no complications.
 
Gwen has been doing really very well since her infusion. We are still weaning down off of the Pred and are down to 25mg without any complications yet! *knock on wood* Woo hoo! The doctors still don't want to admit that the Pentasa was the cause of her problems last time she tried to wean off the Pred, but I'm pretty convinced it was. She has not seen any blood in her stool since she stopped taking it and she is still having regular normal bms about once or twice a day or sometimes even every other day. Gwen is set to have her next infusion on Sept. 9th. I'm hoping it goes as smoothly as the first. Thanks to everybody for the well wishes, thoughts, and support!
 

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