Starting AZA tomorrow

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Jane and Nick

Jane and Nick

Joined
Apr 26, 2013
Messages
160
Hello guys,
Nick made it back from his school trip in one piece with no problems. Says he's never going away again! but we will see. He found the night times very hard and was home sick, but had a great time during the day. He scuba dived and snorkelled they went hiking and jetty jumping. His gastric issues were nil as he ate a diet of rice and watermelon for 5 days ! Lost 2 pounds but we are back on his ensure + and hope to gain it back.:)

We are flying to Singapore tomorrow for the pill cam results and the TPMT results and his prescription filled for AZA. I am apprehensive but I know that we have to take the next step in finding a concrete plan for Nick. Hope to fly back late tomorrow. Should we start our first dose tomorrow or do you think we should wait till we get home ? Do most people take the med at night ? Or if he does that will I miss any potential side effect while he sleeps ? I'm not paranoid or anything:ybatty: I will find out the time scale for LFT and FBC from the doc and see if we can have it done nearer to home and send the results to him, other wise I may have to take out a second mortgage :ylol2:

Will check back in and let you know our results.

Jane
 
I would start maybe start when you get back. It can take a few months to actually start working properly.
Josh is on 125 mg a day. We do 100mg in the morning and then 25 mg at night, but everyone is different in how they reacte to the drug.

When Josh first started on aza it gave him bad headaches, but these went within a few days and he has no problem with it now.

I am glad he had a good time when he was away, it's always a worry for us mums isn't it.
 
My daughter takes her dose at dinner and she had headaches in the beginning too. They resolved after a couple of weeks. It also took a few months to seem that it was working well.
 
Good luck with the Aza. Andrew had it after dinner as I felt happier giving it on a full stomach. We had weekly bloods for 8 weeks, then every 2 weeks, then monthly.
 
So good to hear that the excursion went well! :dusty: Aside from his homesickness, bless him. :heart:

Since it will be a big day and a late one I would wait until you are home, a day won’t make a difference. :) We take Imuran with the evening meal here as most people find that should they have the initial nausea type side effects they tend to sleep through it. You won’t miss the more serious side effects regardless of when taken BUT hopefully it doesn’t come to that! :ghug:

Good luck with the appointment and safe travels!

Dusty. xxx
 
My son always took his before bed so that 1) he'd sleep thru any nausea and 2) he'd always remember.

Where will he do his regulate labs? In KL?

I hope it works for him!
 
You might as well wait until you get settled in at home to start taking it. We didn't start until about 3 weeks after her diagnosis. The GI wanted to give her EEN a chance to start working before introducing something new. We take ours first thing in the morning. We went through a spate of vomiting that we thought might be attributed to the meds, so we initially split the dose. Once it was apparent that the vomiting was flare related and not due to the medication, we just moved the entire dose to the morning. She has never shown any notable symptoms. Hope everything goes well. Good luck!
 
I'm glad for his good trip minus the home sickness.
I hope the travel and appointments all go well.
Hugs
 
My son was on Aza for just a short time as he could not tolerate it. He would take it at bedtime, and 2 hours later be up with a fever of 105 F/40.5 C, which would last all night. If Nick has any outward signs of a reaction, I'm sure you'll know it, even if it's at night. Otherwise, the dr will closely monitor his liver enzyme levels with bloodwork, and that will show how well he is tolerating it. Best wishes!
 
Hi Dusty,
It was a very long day, we almost missed the flights home as the doctor was running 3 hours late. The pill cam showed ulcers in the terminal ileum which was the first time they had been seen, the rest of the pictures looked ok some inflammation but on the whole a little better than the last flexi sigmoidoscopy, however we have been on pred for quite some time. He gave us the prescription for AZA 50mg per day, we took our second dose tonight, boy was it hard to give it to him the first time, so silly because I know he needs it, but still difficult. So far so good no obvious side effects, very early days I know.

Fortunately we can have the blood tests done here in KL and I have booked us in for next Wed, won't need to sell the first born any more:). He is low on vit d and iron so have started to take a supplement. The Proffesor in Singapore wants to see us in two months unless his blood results are not normal, he would like us to keep him posted on any and all test results.

So all in all it was a good visit and we have taken the next step on the journey. Nick is being wonderful and just gets on with things, takes it all in his stride. My hubby had his oncology appointment and had great scan results, not in remission yet but no spread, no activity and his brain MRI is still clear, so life is GOOD ! Next scans in August.

Thank you so much for asking about us.

Take care

Jane
 
Hi guys,
Thank you for all your advice, don't know what I would do with out you all.
We have decided to take the AZA with our evening meal, took the second dose tonight, so far so good. Early days I know. First blood test next week, I have opted for weekly then biweekly then monthly.
Thanks again for all you help.
Jane
 
Hope it works fabulously for him. We started with a dinner time and then a couple of months later switched to morning with no issue. It was just easier for him to remember in the morning.
 
Thanks for the update Jane. :ghug:

Good to hear you didn’t miss your flight! :eek2: And extra good to hear that the inflammation side of things has improved. :)

I hope the addition of Aza does the trick hun and Nick is soon feeling fab and well on top of things for a very, very long time! What an absolute champion Nick is, bless him. :heart:

Brilliant news about hubby, I hope all continues to go well for him too. :hug:

You surely have a lot on your plate Jane and you do a wonderful job managing it all. :medal1:

Dusty. xxx
 
Hi, quick question.
We just had our first blood test in KL after starting AZA and the doctor here would like to up Nicks dose to 75mg, which is fine for his weight, we are on 50 at the moment and have been taking it for 8 days with no obviouse side effects. She wrote a prescription for more meds but they are from a different manufacturer, is this likely to make a difference? The Singapore brand is Azathioprine PCH and the Malay brand is Azamun both 50 mg. I won't increase until I get the blood and liver panel results but I don't want to screw things up, she did mention many of her patients stop taking due to bad nausea, I am hoping it's not due to the type of tablet. Will they be exactly the same recipie ? I know, it's a dumb question. :ymad: but would love some feedback.

Jane
 
Hi, Jane
I am pleased to hear that Nick is tolerating azathioprine well. You are probably over the worst in regards to side affects with it as they often appear early on.
Josh takes 125mg which he has no problem with. He also started on the low dose, increasing over a few months.
With regard to the different name, I am sure it will be fine. Azathioprine is also imuran, which sounds very similar to Azamun, so it is probably the same thing.

Good luck with the blood tests :hug:
 
Imuran:

Active ingredient:
Each tablet contains either 25 mg or 50 mg of azathioprine.
Inactive ingredients:
• hypromellose
• lactose
• macrogol 400
• magnesium stearate
• starch-maize
• starch-pregelatinised maize
• stearic acid
• iron oxide red (25 mg only)
• iron oxide yellow (25 mg only)

Azamun:

Active ingredient:
Each tablet contains azathioprine.
Other ingredients of AZAMUN® tablets are:
- cellulose microcrystalline
- mannitol
- maize starch
- povidone
- croscarmellose sodium
- sodium stearylfumarate in the tablet core.

The 25mg tablet coating contains:
- OpadryTM pink OY-1315GOpadryTM Buff OY-3682
- OpadryTM Buff OY-3690 (macrogol 400
- macrogol 8000
- hypromellose
- titanium dioxide
- sunset yellow FCF [CI15985]
- cochineal [CI75470]
- indigo carmine [CI73015]
- iron oxide yellow [CI77492], iron oxide red [CI77491]
- iron oxide black [CI77499])

The 50mg tablet coating contains:
- OpadryTM clear OY-7240 (macrogol 400 and hypromellose).

I am not familiar with the brand Azamun but I personally will only buy the brand Imuran for the kids. The generic Azathioprine has a powdery finish the kids hate and that coupled with this study is why i go with Imuran:

http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2000.00812.x/full
 
I'm glad Nick is doing well with aza so far! :) I hoepe the change of brands doesn't cause any sort of problem! :ghug:
 
I am whispering incase the CD fairy here's us and jinxes us. Things are going GREAT, normal bowls, no blood. Increased energy less joint pain and down to 10mg of pred tapering by half a tablet per week. Normalish blood counts, slight dips here and there but nothing terrible. :)

We just got back from seeing Godzilla as a treat for a great teacher conference, he was trying to persuade me to allow him popcorn, I was mean and held out not ready to push to hard. Very little growth or weight gain but we have high hopes. Waiting for this weeks bloods to come back and fingers crossed. He has a yucky cold but apart from that he is happy and healthy and loving life, he said he feels normal and it's a good feeling ! His face is less round and his emotions have levelled out. YAY shhhh I mean yay, I will take this good health for as long as we can.

X
 
Woohoo! Fab update Jane! And wishin’, hopin’ and prayin’ it stays that way for a very, very long time! :dusty::dusty::dusty:

^^^^ Does that look like a whisper?? :lol:

So happy for you both. :heart:

Dusty. xxx
 
OK, so I am GUTTED ! Obviously I didn't respect the CD fairy. Our GI was in the UK last week and she thought that it would be OK to wait two weeks for a blood test, Nick started to feel light headed and dizzy so I contacted our paediatric doctor and he took some blood. I went to the movies today with my lovely husband, we never go out! It was lunch time the kids were safe and at school, and what do you know, while my phone was on silent 3 calls from the DR and a text!
Nicks LFT was off the chart,
AST 42 range is 16-40
ALT 85 range is 8-54
GGT 470 !! Range is 11-63
Alkaline phosphatase 200 range 40-129
I am so bitterly disappointed ! The only thing that changed is that we went from 50mg to 75 we were doing SO well. Even now the only symptom is dizziness. His GI is back and we are going in tomorrow morning. Should I give him his AZA tonight ? The doctors don't seem to be confident and I haven't had any direction other than his levels are high and bring him in tomorrow,if you would like to.

Damn, damn, damn !
 
Hugs!!!
DS lft numbers went up while on 6-mp.
We had to lower the dose
Later ... they were triple normal range we got the call of stop don't give another dose .
But that said DS did not have any symptoms other than his Gi stuff.
Can you call to ask if you should give the dose tonight or wait ?

We ended up adding allopurinol but again every time we tried to get to therapeutic levels his liver numbers would go up so we switched to Mtx .
Which also didn't work .
 
Thank you my little penguin,
His GI responded to my email and just said would you like to bring him in ? It's so different in Asia there is no follow through. I think I have decided to hold off tonight, one dose won't hurt, I think, I hope?
Goodness I really thought we were getting some where.
Thank you for responding, it gets very lonely sometimes.
 
Fwiw one never hurt DS - there were a day or two where we went oops on the 6-mp pill due to nausea vomiting etc....
Now when we skipped a week to add allopurinol things went down hill fast
 
So sorry to hear this. Did he have a TPMT test done before starting? Maybe with dose adjustments and Allpurinol things will fall into place. It can take awhile to find that sweet spot, but I'd also be mentally preparing yourself for a med change as well.
 
Yes, we went to Singapore for the TPMT test and it was ok for him to start. We only have a couple of choices of meds that the Malay government approve. Can we come down in dose or has the damage been done ?
 
We also had to do the imuran allipurinol combo and it worked for a while for us, we dropped the imuran dose way down and added allipurinol.
Jack would miss doses and 1 even 2 days never seemed to make much difference. Hope everything works out.
 
I would definitely hold off his dose tonight. When my son's numbers went up they said to stop straight away. We went from Aza to Mercaptopurine and he has been fine with that as it is easier on the liver.
 
If you stick with Aza he'll come way down on the dose. Allpurinol makes it work better with less medication, if that makes sense. Or like Sascot said, switching to 6MP might be an option. Same med, just in a broken down form that may be easier on him.
 
Now I see the double post. :eek2:

Have answered the other one and likely not told you anything that you haven’t been told here. :lol:

Good luck today Jane! :ghug:

Dusty. xxx
 

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