Vant - Aza

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Catherine

Catherine

Moderator
Joined
Jan 30, 2012
Messages
3,912
Aza - no response? little or no symptoms?

Just back from check up with GI following our trip to hospital last week.

Sarah appears to have no response to aza:thumbdown:.

Have arranged for MRI for Wednesday morning. Need to done quickly as she does have a response to pred.

- calprotection highly elevated at 613.8 ug/g they were 520 in February.
- not responsing to iron tablets
- stay on pred 30mg
- increase iron supplement

Plan of action maybe.
- Infliximab
- Iron infusion
- Possible hospital and IV steriods.

How can she seem to be so well and being getting sicker??.:thumbdown::thumbdown:

Yes, she a pred but she has no symptoms.
 
Last edited:
Hugs that is so hard to hear.
Hopefully her MRI will help guide your decision .
I know we had a similar issue in June only lots of general symptoms.
Did the doc mention Mtx?
Sometimes you can get a response with that but it is a waiting game.
For us it was 8 weeks wasted.
I can say remicade is the best thing that happened to DS .
Hope the MRI goes smoothly and they come up with a good plan.
It is so hard when the disease is silent.
 
Oh no, I know you have to be upset, I'm so sorry to hear her calprotectin was elevated. I hope the MRI will give you some answers as to what the best option for treatment is. Sending hugs your way!
 
I hope the MRI will help in choosing the right meds for her. It is hard when you just can't 'see it'...:ghug: we're in the same boat! :(
 
Feeling better today. Changed title to fit better whats happening. Thanks for your support.

Sarah seems fine, completed two hour swimming session this morning.

The MRI date has been changed to Wednesday as company doing test believe this is a better centre for the test. This test is not covered by medicare or health insurance just well I have a credit card.
 
Glad Sarah seems ok, good luck with the scan. Always find it weird how this disease can get worse when the kids have few symptoms.
 
Sarah's main problem is anemia and iron levels which are not rising with supplements.

We have double iron supplement from today.

MRi has been changed again, it now Thursday.

Year 12 biology exam tomorrow.
 
Has Saarh had TPMT metabolites testing done? I see they can run that test at the Royal Children's Hospital in Melbourne.

It surely is hard when results and symptoms don't match. I think in many ways it's more confusing and harder to bear when your child does seem so well but the tests refute it. It makes decisions all the more difficult.

Good luck with the scan and sending loads of luck to Sarah for her exam! :goodluck:

Dusty. xxx
 
Good luck hun! :hug:

I hope all went well for Sarah today, bless her. :heart:

Dusty. xxx
 
Sarah said the exam felt easier than mid year but was very long.

She asleep in bed at 5.30 when I got home she now not tired.

I read up on remicade and medicare approval. I think gi will have trouble getting it approve for Sarah. On my reading you need a CDAI index of >210, her is currently 33.

Will across that bridge when we come to it, hopefully will show improvement. Time to hope for the best.
 
Awwww, poor love but good to hear she felt the exam was better than the mid year. :)

She would still fit into the paediatric criteria (6-17) so you may find that the GI has an easier time of it, particularly when there is weight loss.

Good luck!

Dusty. xxx
 
She now low normal weight. Your right Dusty, need to the trust the gi wouldn't have mentioned this med without know that if they right and she is not responsing to aza they could get it approved.
 
Sarah seems ok, no symptoms maybe a little more tired.

MRI tomorrow, still no 30mg pred.

Hate this waiting game.
 
I hate the waiting game too! Just wanted to send good vibes your way for the MRI tomorrow! I'm glad she isn't experiencing any symptoms right now.
 
Hi everyone

MRI completed yesterday, didn't remember it taking so long.

Appointment 9.45 am

Had to drink 1 litre of prep in half an hour and was given nausea medication first. Then awaiting another half an hour for the test to done.

They put the drip in before taking her in at about 11.00 am.

They give constrast and buspan? (I know this a ibs med) via drop.

Test finished at about 12.00pm.

The next waiting period has began.

Sarah is still feeling well and taking 30mg pred.
 
Thanks for the update Catherine! :)

Sarah, and you!, will be glad to have that test over and done with! phew! :hug:

I hope you don't have to wait long for the results. Fingers, toes and everything else crossed! :goodluck:

So good to hear that Sarah is still feeling well. YAY!

Dusty. xxx
 
GI has returned my call.

MRI is both better and worse.

Will not qualify for Infliximab at present CDAI index too low.

GI is requesting advice from others. Current advise to sit tight. She is awaiting to advise from Alfred Hospital, on whether there is anyway that Sarah would qualify for Infliximab due to her age.

I have requested copies of both MRIs.

Thanks for listening.
 
Ugh! My pet hate...I hate that CDAI! Too heavily weighted toward diarrhoea and blood. :( IMHO it does not truly represent disease, for many people, that is located in the ileum.

If I was a doc I wouldn't be past using a little poetic licence...:shifty-t:

Good luck Mum, I hope the docs are able to weave a little magic. :hug:

Dusty. xxx
 
Further on call with gi, which I took at work while I should have been working, should have taken notes.

Problem area is small, about 10cm higher than where they can reach with colonscopy. They are concern that there maybe a start of fistula? This is unlikely to cause pain. If it is this goes to the bowel, it not good but it ok but if it goes to the skin this cause really problems. This fistula. Was not mentioned on previous mri. Well I think we were talking about fistula also mention more common in the anal area.

Gi is asking Alfred if there is any way of getting approval. What further tests to do? They will do the blood test Dusty mention as gi does not what to even consider increasing aza without it and it would be part of the approval process as she will need to approve failure of aza.

Questions
can aza heal fistula
Can pred heal fistula?
 
Last edited:
It would be a fistula they are talking about Catherine.

The not so bad scenario they are referring to is from bowel to bowel. When inflamed bowel rests on healthy bowel it creates adjacent inflammation and the process can cause a tunnelling effect or a fistula. Another scenario is what happened to Matt and the fistula ends in an abscess into the abdominal cavity. The last scenario is the infection from the fistula tunnels up to the skin. Much like the problems that occur with perianal disease but often more difficult to treat as you don't have options like seton's available as a treatment.

It is possible for both of these meds, Pred and Aza, to heal fistula's. It is also possible for biologics to heal them. The problem is, fistula's that develop in the ileum can be difficult to treat. Studies seem to indicate that while biologics are quite successful with perianal fistulising disease they aren't as successful with fistulising ileal disease. In Matt's case the added complication of an abscess mean't that the biologics weren't an option anyway.

Dusty. xxx
 
Just getting caught up with your thread. Sorry to hear about the fistula - Andrew still has one peri-anal fistula and they are wanting him to go onto 6mp. Struggling with that since he is so well otherwise.
I hope your doc manages to get something sorted so that they can get everything treated soon!
 
If got discussion with gi correct? Is there something that you can see on a mri, that is the stage before a fistula, if so this is the stage Sarah is at.

Also received sms from gi, her second opinion agrees sarah's mri is odd, so will review with radiologist, he also suggested blood tests. I will talk to him again after I talk to radiologist, and call you next week.
 
I'm not sure what it would be so will hazard a couple of guesses...

?Perhaps the depth of inflammation present.

or

?A microperforation. It would show as air in the abdominal cavity. IIRC about one in three microperforations develop into a fistula.

Dusty. xxx
 
Thanks upsetmum.

MRI results are concerning. Should know more next week. Why do results always come in on a Friday? Sms from gi come after 6pm which I apreciate.
 
Oh Catherine! Just getting caught up now and so sorry that when things seemed fine they took a turn. How heartbreaking and confusing for both of you. Sending lots of chlorine hugs from the USA!!!!!!!!!
 
Decide to try hide under rock, try and believe odd is a good thing.

Sarah has been on 30mg for 15 days, current is not planning to taper until after year 11 exams which start on Thursday and go for a week or a new treatment plan in place. Does this sound ok?

Work out the pedi? index and got score of 7.5.
 
Last edited:
I like my rock too, it is a warm and comfortable place...:hug:

The plan sounds okay hun. Take care and just know we are thinking of you both. :ghug:

Dusty. xxx
 
As far as the pred DS was on it for a long time without a taper while we were figuring out what to ... Sometimes you just need it to buy time.
Hugs
 
Ditto to MLP. At that symposium I recently went to there was a huge "don't hate prednisone" presentation. When you need it, you need it and it is important to keep her tip top for her exams. Bless her heart having to deal with this and exams. You know what to look for and when to take action. She is in good hands!
 
Just sending support and lots of hugs... It's always hard but seems even more so when you're in limbo, still waiting to determine what is the next step... :ghug:
 

Similar threads

G
Multiple treatment options
Replies
7
Views
2K
Gazpacho
G
willpwuk
A&E/ER and crohn's
Replies
14
Views
2K
shamrock15
S
Catherine
Our journey to dx looking back 2 years on
Replies
15
Views
3K
Catherine
Catherine
E
Undiagnosed: Urgent cry for advice!
Replies
6
Views
6K
ronroush7
ronroush7
blobbyknobby
Invisible Disabilities...
Replies
1
Views
1K
ronroush7
ronroush7

Latest posts

Back
Top