No Improvement in pain after 2 weeks on steroids

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kimmidwife

kimmidwife

Joined
Sep 19, 2010
Messages
4,390
Hi Everyone. I wanted to pick your brains. Caitlyn has been having a Crohn's flare. She was on oral steroids for 1.5 weeks with no improvement. She was then in the hospital on IV steroids for 4 days. She had some improvement but is now home and continuing to have a lot of pain every time she eats. They have stopped her methotrexate since it seemed to no longer be working. She is currently on:
Prednisone 20mg 2x day
Pentasa 250 mg 3 x day
Cefdinir antibiotic for pneumonia
Florajen (probiotic)
Nexium
Amitryptalline at bedtime

I just don't know what to do about her pain at this point it does not seem to be improving!
 
Wow. That's quite a med list for a young girl. How old is she? How much does she weigh?

Are you absolutely certain that she's not having an adverse reaction to the Pentasa? It's not common but sometimes ASA drugs make things worse. They do for my daughter.

What's amitryptalline for?

Not knowing anything about her history, if it were my daughter I might try discontinuing the Pentasa since it's sort of redundant with the Prednisone anyway (not quite, but close enough) and watch for improvement. If that worked, I'd be looking to replace Pentasa with 6mp or Imuran as she weaned from steroids.

I am not a doctor, so take this for what it's worth. All of my experience is based on my own disease and my daughter's and while I have 38 years of combined experience, it's still only with two cases. :)
 
HI Kim, i would suggest has muppet said discontinue the pentasa , but, i would suggest talking with her doctor at first to see what he or she has to say. since it's not doing her any good. and i would also suggest putting her on a liquid diet for a while like boost, ensure or any nutritional drink and drink plenty of water to keep her hydrated. If she is eating and it causes her pain then it's a bad flare up. i am no doctor but, the liquid diet helped with me and i was on steriods 40mg for two months before i could get my flare up under control. so maybe it's going to take some time before the flare up is under control.I am sorry i have no other suggestions ,but i hope her pain eases up soon and she can get her crohn's under control. I am sorry she's in so much pain i wish i could give you more advice but, at this point i can't. best wish:rosette2:
 
I'd also consider getting a second opinion from another GI in another practice on her treatment. It sounds like they're going for the "throw crap at the wall" approach to drugs and that would unsettle me a great deal.
 
Hi Scott and muppet. Caitlyn's is a hard case. She is allergic to 6mp/Imuran and had a mild allergic reaction to remicade. She ended up with sugery this past December to remove part of her large intestine. She was put on the amitryptalline after the surgery for continued pain that they likened to a kind of phantom limb type syndrome where the nerves are still sending pain messages even though the cause of the pain is gone. It did help. She had a great summer and went to sleep away camp for 7 weeks. The last week of camp she got the stomach flu (along with half of the camp) and started to go downhill from there. She has now been having this flare for about 5 weeks and nothing seems to be helping. She was on Methotrexate which seems to have stopped working with this flare so they now discontinued it. I think they added the pentasa to use as a maintenance drug for after this flare resolves. I just did some reading on enteral nutrition for Crohn's (someone posted about it) and I was thinking of trying it if Caitlyn will agree. (she is a teenager after all). I'm at my wits end to help her and I hate to see her in so much pain! We had started with a new GI doctor last year because we had a disagreement with our last one who thought Caitlyn's continued pain was all in her head. We don't have many more options here for other GI docs. St. Louis is not that big. We are seeing her doctor again tomorrow.:sign0085:
:poo:
 
When you say she's allergic to 6MP/Imuran, what do you mean? What sort of reaction did she have?
 
She had a stevens johnson type anaphylactic reaction. She got a very high fever and developed blisters on her skin. This is a very rare and very serious type of allergic reaction that most people have never heard of.
 
My daughter had a very similar reaction to Remicade. 0.3% of patients. :)

Maybe 40 prednisone isn't cutting it. My 13 yr old just came down from 60mg.

And I'd still question whether there's an ASA reaction going on. Pentasa hospitalized my daughter twice.
 
I will ask him about that when we see him tomorrow.. I will also ask him about 60mg of prednisone. For some reason they wanted to keep her at 40mg when I asked him.
 
60 is a really high dose that isn't typical, but if 40 Isn't working 60 MIGHT.

Good luck tomorrow.
 
Hi, sorry to hear your daughter is having such a hard time. I would definately ask the docs if it's worth going onto a liquid diet for 8 weeks like my son is. Especially if she is having pain when eating then it might be good to let her body have a rest from having to digest actual food. My son is on Modulin. Good luck
 
Just a quick onte to say I hope your appointment went well and I hope it won't be long until your daughter will start to feel better. What did they think to liquid diet?

Take care of yourselves,
hugs,
Liz
 
Has any further testing been done to rule out any complications?

Just thinking out loud...

Dusty. xxx
 
DustyKat I was thinking of that too and will ask about that at our appt. We are on our way to it in a couple of minutes. I will also ask about the liquid diet.
 
So we went to the doctor today and after waiting 2hrs to see him. He sat down with us for over an hour to discuss a plan. He started Caitlyn on Lomotil QD to see if it helps slow things down. He thinks one reason she is taking longer to get over this flare is because of her resection she had in December. This is her first bad flare since the surgery. He also said if she is not showing improvement by Monday he wants to do imaging. We tlked about the enteral nutrition. Now he said you cannot drink it. It has to be given by NG tube or a tube implanted surgically in the stomach. Does anyone know is there a form you can drink?
 
There are preparations that are only given via tube feedings but there are also many preparations that are designed and palatable enough, sometimes with flavouring added, to be taken orally, e.g. Ensure, Boost, Fortisip, Osmolite etc.

I hope things start to settle for Caitlyn soon...:hug:

Dusty. xxx
 
Thanks DustyKat,
She had another bad night after eating dinner even though we are trying to have her eat only soft things. She felt better this morning though and actually went to school. She wants to try to stay the whole day but I told her if she needs to to call me and I will come and get her. She loves school and her friends and really wants to be there.
 
Is she being started on the formula in addition to all those other meds, or are you replacing anything?

Out of curiosity, what did the doc think about an ASA reaction going on?

I definitely hope for the best for your daughter. I know what it's like when nothing's working.

EDIT - oh wait I just re-read, she hasn't started formula yet, or may not?

What's Lomotil? Is that an anti-spasm drug? An anti-diarrhea drug? I've always been told by every specialist that anti-diarrhea drugs are a bad idea for Crohn's/Colitis.
 
No he is not starting her on any kind of formula or anything. He only added lomotil. He did not think it was a reaction to the pentasa since her only symptom now is severe pain after eating and then having to run to the bathroom. The lomotil did seem to help with the running to the bathroom last night but not at all with the pain. I have a feeling she is going to end up getting the imaging on Monday.
 
PS. It always seems like her pain is the worst at night after dinner even if it is a light dinner. Has anyone else had this problem? I can't figure out why.
 
Could be because that's when her morning pred is wearing off. I assume she takes the evening dose after dinner (and it takes a while to kick in.)
 
kimmidwife, I've always been instructed to take my steroids in one go every day. For me thats always been every morning. Just wondering whether Caitlyn would benefit from this. Maybe worth asking the specialist about it. It would deliver the Pred in one dose & possibly knock the inflammation down that way.
Rgds
Grant
 
It's not uncommon to split large daily prednisone doses for pediatric patients to help mitigate side effects.
 
Hi all. We tried over the weekend to give her the steroids an hour before dinner but she is still having severe pain at night. She is going to have an MRI on Wednesday. I will keep you all posted.
 
Thanks for the wishes. I am not sure if I want them to find something to figure out what the pain is from or if I don't want them to find anything.
 
Having a reason is always better than not having a reason, for both you and the patient.

Sometimes the answer sucks but no answer is even more harmful both in terms of stress and potentially misdirected treatment.
 
Muppet,
You are probably right. I just don't want her to need more surgery. She just had her resection this past December.
 
I have to admit that once surgery is involved, I'm out of my element on advising anyone. I've been avoiding surgery like the plague for both myself and my daughter. I have nothing but sympathy for people who haven't had the luxury of going without it like we have so far.

Still, if more surgery is what she needs for a positive outcome, that's SO much better to know than to sit in the dark and hurt and not treat.

Devil and the deep blue sea, though, I know.
 
HI Kim, good luck with the mri and i hope everthings turns out alright. she needs some relief from the pain and i hopefully she will find some soon. best wishes.
 
Just wanted to wish you luck with the MRI today! Hope it goes well and you get answers to help her feel better quickly!!
 
Good luck with the imaging hun...:goodluck:

Have they discussed Humira with you?

Dusty. xxx
 
Hi All the MRI went well. She was so good. They had to stick her 7 times till they finally got the IV going for the contrast. My poor Baby. We are now awaiting the results. Hopefully will hear from the doctor tomorrow.
 
Hi all we got the MRI results which showed inflamation but no strictures or anything else. They can'tfigure out why the steroids are not helping.
 
kimmidwife said:
Hi All the MRI went well. She was so good. They had to stick her 7 times till they finally got the IV going for the contrast. My poor Baby. We are now awaiting the results. Hopefully will hear from the doctor tomorrow.
Click to expand...

OUCH!!! Poor love.....:hug:

Matt didn't really respond to Pred either. He had two hospital admissions for pain and the IV Hydrocortisone seemed to help settle things along with the antibiotics but that was it as far as steroids was concerned in obvious results.

It turned out Matt had a microperforation, fistula and abscess. The inflammation masked the fistula and abscess so they weren't able to visualise it on imaging when he presented at the ER both times. They were only able to see them when they did the imaging while he was in hospital and at the completion of 5 days of IV treatment.

The first time he presented they diagnosed a microperforation because they saw air outside the bowel on the scan but the second time he presented that wasn't present.

Maybe the inflammation that is present is masking something in your daughter's case as well, that may explain why she isn't responding to the Pred???

Dusty. xxx
 
I am so sorry that getting IV access was awful. Horrible for anyone to put up with, and certainly a young person.

The MRI sounded OK, but I hope they can worked out why steroids aren't helping, or what will help to get her feeling better.

I don't know enough, may be some people respond quicker/better to steroids.

But I hope you can get on a path to wellness soon.

Take care,
LilyRose
 
Hi All, Caitlyn seems to be feeling a little better. Her doctor gave us the Ok to send her away for the weekend with her youth group she is a member of. We have been worried like crazy about how she is doing and she finally just texted me that she is having a good time and one of the girls she is rooming with has Cohn's disease as well. Hopefully she has made a new friend who can be a support person as well. DustyKat I am thinking about what you said and am hoping there is not something we are missing. Her doctor said if she does not show improvement by Monday he wants to run more tests. I am hoping she really is feeling a little better and not just telling me that because she doesn't want me to worry while she is away.
 
Thanks for the update hun.

It is so good to hear that Caitlyn is feeling a bit better and is away enjoying herself. :)

I hear you about the worry and concern with her being away! Yikes, I have been there many times myself so mega loads of hugs to you...:hug::hug::hug:...I hope she truly is feeling a little more on top of things!

I have everything crossed Mum that she may well at a turning point and this feeling better is a taste of things to come.

Dusty. :heart:
 
Hi All Have not been on the computer all week. I have been sick myself some kind of flu bug (hoping Caitlyn does not catch it me and my hubby have it) Any way to update you all Caitlyn's MRI came back with a lot of inflammtaion but no blockage. She was doing a tiny bit better but now started having very bad pain again last night and today. Her doctor wants to start her on a new medicine called Cimzia if the insurance will approve it. In the meantime for the next few days he put her back on Flagyl and prescribed percocet for severe pain. It is sooo tough to see her in pain and not know how to help her. I feel so guilty like I need to do something else this is frustrating! I did buy her this really cool heating pad in the mall. It is filled with a gel. You plug it in for 15 minutes and it heats up and then stays hot for 4 hours. She really likes it and uses it when the pain is bad. She says it helps a little
 
Okay I just read about cimzia and am now freaking out. It says specifically not approved for pediatric use and that teens and young adults are more likely to develop lymphoma if they take it. There is no way I am letting my daughter take that medication. I think we need to talk to him about Enteral therapy again. She said she is willing to do it as long as they place the tube in her stomach she does not want to have to place an NG tube.
 
I'm so sorry to hear that Caitlyn is feeling poorly again. :(

Why did the doc suggest Cimzia over Humira?

Cimzia is another of the TNF blockers and they all carry the same risks. Cimzia is the newest on the block so I would imagine that is why it doesn't have paediatric approval.
I know it is an awful decision to have to make and it is personal one. You have to decide what is right for your daughter and your daughter only. I would definitely talk Enteral therapy again.

Don't back yourself into a corner though Mum. If the Enteral therapy doesn't work then the inflammation remains and while ever it is there it is doing damage and causing pain.

I can allay your fears a little and tell you it is rare and mainly affects adolescent boys, unfortunately there are quite a few here that have boys on TNF's and this remains a constant reminder to them. But what choice do you have...you are forever between the devil and deep blue sea.

I send you all the luck in the world hun and I hope more than anything a revisit of EN will do the trick...:goodluck:

Dusty. xxx
 

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