What's up ? Aza not working ? Is this a flare ? Whats next ?

[Leed2713]

Hi everyone its been awhile since I have been on. My son was diagnosed last june with crohns aged 12. He was very ill on diagnosis and ended up on 10 weeks of ENN through an NG tube. He then started on Azathioprine and everything was seemed to be going fine. He was still getting cramping but not of great severity. From January pains started to become more frequent and nausea really badly. He had his dosage increased of azathioprine as he had put weight on and also grown. His crp and esr are rising and haemoglobin levels are dropping. He has had a faecal calprotectin sent off and awaiting results. Over the last 6 weeks he has been having to get out of school as the nausea weakness and stomach cramps have been making him feel so ill. His trips to the bathroom are becoming less frequent. He said he cant explain how he feels but just doesn't feel well, really weak and nausea is overwhelming. We are relatively new to all this and thought all was going well even thinking he was in remission. Is this a flare ? Is the medication not working anymore ? is this a sign of narrowing ? am I just a crazy mother ? it really is affecting his life and making him feel miserable. He has started eating less as well which he started before.

 

[Alidawn]

I have looking all night at this forum for someone that is on the same medication as my daughter. My daughter was diagnosed 6 months ago and immediately was put on a steroid and AzaTHIOprine. I blamed all the side effects on the steroid and could wait till she got off of it. Finally, the day came and she was taken off of the steroid but the AzaTHIOprine dose was upped. She never feels great, she feels yucky, nauseated she'll throw up. This drug is driving me crazy.

 

[pdx]

Leed2713: It does sound like your son could be in a flare and may need a change in treatment. The fecal calprotectin test should give you an idea of whether he still has inflammation. It sounds like you're in contact with his doctor since you're doing testing, but do make sure you tell the doctor about all these symptoms.

I hope both of your kids find treatments that get them feeling better.

 

[Maya142]

Alidawn: My daughter is also on Azathioprine. She does not have any side effects with it but I believe nausea is a common side effect. I'd let her GI know that she is not feeling well on it.

Leed2713: It does sound your son might be flaring. If his FC is high, then they may want to do scopes so they can see where the inflammation is. He may need a higher dose of Azathioprine, or a different medication altogether.

It's hard waiting and watching your child get sicker, but you won't really know what the next steps are until his Fecal Calprotectin test is back. Hang in there!!

 

[Sascot]

Whether it's the Aza or the Crohns causing issues it sounds like a change in med is necessary. Hope you get some answers

 

[kimmidwife]

It does sound like the aza is not working. I would let the GI know.

 

[CarolinAlaska]

Sounds like a flare. I'm sorry to hear it.

 

[Leed2713]

Hi everyone thank u all so much for replying. I haven't been back on in few days and thought my email address would mail me when I had replies. I thought no one had replied to me. so glad I am back on today. I am awaiting the blood results from this week yesterday. His crp and esr were still rising and haemoglobin descreasing. the calprotectin results still not back. Last night he was in so much pain that he asked me if he was dying. He is now in so much pain again today. I am going to see with the nurse at my Gp office as I know I will get the haeomoglobinn today but the crp and esr wont be until tomorrow. The gastro nurse is off today at the hospital. She is due to ring me tomorrow anyway so I have left her a message again. He hasn't went to the toilet at all today so I am getting really concerned.

 

[Catherine]

Leed2713

My daughter had number of increases her aza doses and 3 course of pred before getting in a solid remission. Have they tested the aza levels?

 

[Leed2713]

hi Catherine

We were down at the hospital yesterday. They sent off bloods for testing levels for the Aza to see if its working. Not really sure what this means. the nurse said as soon as she seen him 'oh we really did need to see you' as she thought he was vey pale. Ofcourse when he seen the consultant he had perked up a little. So they have him booked in for upper and lower scope and an MRI in the next fortnight no date yet though. They also luckily got a sample to send for faecal calprotectin. they said both of these will take a fortnight to come back. The consultant is on a course all next week so they wanted to have a plan in place incase he gets any worse in the mean time. He now doesn't want to eat or drink as the cramps keep coming and he is blaming the food and even water. They said if he starts to vomit they will admit him. but at the moment its cramps and nausea and a reduction in bm. They didn't go into much detail but said they may need to explore other options but want to have full picture. Do you think another change in dose may be all he needs ?

 

[CarolinAlaska]

For Jae, adjustment of medication did make the difference. She is finally doing better.

 

[Leed2713]

For Jae, adjustment of medication did make the difference. She is finally doing better.

I'm going to remain positive that this is all he will need but they have already increased it. Fingers crossed it is so hard watching him go through this wish I could take all the pain away. He hasn't even pee'd today or no bm. Roll on next week to we get answers and help.

 

[Catherine]

hi Catherine

We were down at the hospital yesterday. They sent off bloods for testing levels for the Aza to see if its working. Not really sure what this means. the nurse said as soon as she seen him 'oh we really did need to see you' as she thought he was vey pale. Ofcourse when he seen the consultant he had perked up a little. So they have him booked in for upper and lower scope and an MRI in the next fortnight no date yet though. They also luckily got a sample to send for faecal calprotectin. they said both of these will take a fortnight to come back. The consultant is on a course all next week so they wanted to have a plan in place incase he gets any worse in the mean time. He now doesn't want to eat or drink as the cramps keep coming and he is blaming the food and even water. They said if he starts to vomit they will admit him. but at the moment its cramps and nausea and a reduction in bm. They didn't go into much detail but said they may need to explore other options but want to have full picture. Do you think another change in dose may be all he needs ?

They will be testing blood level for AZA. The results will tell them whether they can safely increase the AZA dose.

My daughter is on high dose AZA, she take 200mg a day and weights approximately 58 kg. She started at 50mg at 44 kg. She is now 20 age old.

 

[Leed2713]

Hi Catherine thank u for getting back to me. They increased his dosage from 50mg to 75mg when he started showing symptoms again. This increased doesn't seem to have helped at all. I there a possibility that if they increase it more that it will actually help ? sorry that's probably a really silly question but pretty new to all this. :facepalm:

 

[Catherine]

How long since the increase? Aza takes while to have full effect after each increase dose rate.

We use pred to give the Aza time to work. At one stage we were testing Aza levels every few months then increasing the amount Aza. Sarah had 7 increases in dose in total.

 

[Catherine]

I think you may need consider using EN or pred to get back into remission along with increasing Aza.

Aza works well at keeping someone in remission but it not good at you getting into remission. But don't want to this unless you have to after the further testing is complete.

 

[Leed2713]

I think you may need consider using EN or pred to get back into remission along with increasing Aza.

Aza works well at keeping someone in remission but it not good at you getting into remission. But don't want to this unless you have to after the further testing is complete.

It has been 2 months or thereabouts since increase. He did seem to be in remission for few months then his crp and esr started to keep rising at each blood test. Then symptoms began again and then increased dosage and the symptoms continued to get worse. He is due to get scopes and MRI next week but no date yet and at that stage metabolic level test for aza will be back and fecal calprotectin. February's fc was 300. His crp was 28.37 and esr 48. Nurse mentioned something about alk phosphate 177 and serum creatine 41. Next week will tell the tale I suppose it's just hard watching him suffer and having to wait. He is such a bad colour and eyes sunken in. He hasn't lost a lot of weight but has lost about 6lb in the last week xo

 

[Catherine]

It has been 2 months or thereabouts since increase.

Two month is longer enough to get blood level of aza to stabilise at their new level but may not be longer enough to know whether aza will work at that dose level as it takes up 4 months to be effective. Meaning it a good time to test levels to see if you can increase the dose.

How long go did the esr and crp start rising, did he have symptoms then?

Was faecal calprotectin done because of symptoms in February? Or it done as regular monitoring.

 

[Leed2713]

Two month is longer enough to get blood level of aza to stabilise at their new level but may not be longer enough to know whether aza will work at that dose level as it takes up 4 months to be effective. Meaning it a good time to test levels to see if you can increase the dose.

How long go did the esr and crp start rising, did he have symptoms then?

Was faecal calprotectin done because of symptoms in February? Or it done as regular monitoring.

They started to rise around the end of February. He was having symptoms then as well. The faecal calprotectin was done around that time as well because of these symptoms. The consultant didn't seem to think that it was that high. Though he doesn't really give u any indication of what he think until he has decided upon exactly wants to do. That's why he repeated it I think. I suppose he doesn't want to worry me until he gets full picture. But I would like to know so I could do my own research.

 

[Catherine]

Where is your child Crohn's located?

Do you have any other faecal calprotectin results?

Faecal calprotectin results are very individual. There are children on here who have results in the thousands, but my daughter has never had a reading over 650. A result over 200 is a full flare for my child.

 

[Leed2713]

Where is your child Crohn's located?

Do you have any other faecal calprotectin results?

Faecal calprotectin results are very individual. There are children on here who have results in the thousands, but my daughter has never had a reading over 650. A result over 200 is a full flare for my child.

He had terminal ileum mainly but also osephagus. I don't have any others to compare until I get this one that was sent off.

 

[Mehita]

How are things going?

 

[Leed2713]

How are things going?

He is in hospital since Monday having trouble peeling and extremely constipated, low grade fever and pain to right hand side and around belly button and finding it sore to walk. The ultrasound showed extremely abnormal area around the appendix. So after being put back on the list even though extreme pain he eventually went to theatre on Tuesday night. I knew something was wrong when I didn't get seeing the surgeon for over 4 hours. They took the appendix out but the area of the bowel and terminal ileum where so inflamed they had to remove them too as there was also an abscess and stricture so ended up open surgery. He is in a lot of pain told me last night he wanted to die rather than live in this pain anymore. The surgeon and gi couldn't believe what they found when they went in as they said in their opinion he didn't appear to be in great pain even though he said it was a 10 on the pain scale. So they now know he has a high pain threshold. He is getting morphine, antibiotics and paracetamol all through the iv. Today is a new day and even though whe has vomitted a lot this morning I'm remaining positive that each day he will feel better. Once he gets over surgery the gi wants to progress to imfliximab infusions xo

 

[CarolinAlaska]

Horrible story. I'm glad they found the problem.