Quick Imuran question and a bit of a vent

[Goofychicken]

This question is probably pretty dumb We have so much to learn!

Is there any kind of bloodwork or other test that can check the efficacy of imuran? We THINK it's working - we've finished loading (she jumped to 2.5 mg/kg about 3 weeks ago) and EEN for her last flare ended about 5 weeks ago. So far so good. But I hate not knowing whether it is actually working!

I really dislike this whole viewing my daughter as a ticking timebomb thing. I wish I had a magic 8 ball to tell me when she's going to flare again. We're trying to learn to enjoy the good times instead of constantly worrying about when our luck is going to run out, but it's HARD. I know this is still all so new to us and we'll get there but I want to get there now!

We have to take her for bloodwork tonight and she's going to freak out when she finds out. But we're taking her to pick up our (her) new kitten right afterwards and she doesn't know about him yet so this should soften the blow. DH thinks we're setting a bad precidence and she'll be looking for a new kitten every time we get bloodwork done! lol We're using him as sort of a therapy animal for her. She adores our older 3 cats, but they're all getting up there in age, so we thought if we got her her own kitty now, she'll form a tight bond with him and he can hopefully be around into her teenage years and can be a good friend to lean on when she's not feeling well.

Fingers crossed all of her labs come back looking good! We're not seeing any sign of a reaction, but you never know.

Hope everyone's week has been good and that you can all have a restful long weekend with your families!

 

[Jmrogers4]

They can check for theraputic levels of Imuran. But I would go more by her CRP/ESR levels are they raising / lowering. Another thing is a fecal calprotectin which also can test levels of inflammation.
My son was on Imuran for several years and while we believe it worked for the most part we know suspect that he had some low level of inflammation occurring since he did not grow or gain weight while on it.
His levels showed theraputic and blood levels were normal it was not until recently that we have discovered that fecal calprotectin is about the only thing that shows inflammation on my son.
So I guess what I'm trying to say is you need to look at the whole picture. If blood work is normal but she is not growing/gaining then that would call for further investigation into if Imuran is working or not. If blood is normal and she is growing/gaining and showing no symptoms you can assume it is working. Make sense?
We still stop for an ice cream cone after labs, doesn't need the bribe anymore as labs don't bother him but I think of it as just a little extra since he has to do them so often. So it doesn't have to be a kitten each time

 

[Goofychicken]

We usually take her to the bookstore or something like that. It just happened to coincide with kitten pick up today She still FREAKS when she has to have blood drawn, but she's 4 so it's to be expected. I know eventually it won't be such a big production! Her CRP/ESR levels were normal last round (about a month ago), so we'll see what they come back as this time. And she's gaining. She had dropped to 26 pounds with the last flare, and with EEN we had gotten her back up to 32 lbs. Since coming off of EEN she has gained another 2 pounds so I think we're on the right track. I was just curious if there was an additional test to check efficacy.

 

[mallowpufft]

If she isn't having any pain and things are relatively normal, it's working. My GI has only had the capability to do the labs for the past year. They used to have to have to send them out to Prometheus.
The biggest reason to make sure the Imuran levels are in the therapeutic range is to make sure they're not too high and damaging her liver.
I've been on it for over a decade and at the max dose my GI is comfortable with for four years and I'm nowhere near the bad range. It's a cumulative thing so even though she's done loading, the test won't show much for the forst six months to a year.
And as much as it sucks, us Crohnies are ticking time bombs. I just try to keep my stress levels down and hope for the best (but be prepared for the worst). Hopefully this therapy works for her and keeps her body happy for a while.

 

[Tesscorm]

My son has never used imuran but, from all I've read here, you'd think I'd be absolutely certain about testing for therapeutics levels! :ybatty: But, while not certain, I do believe levels can be tested. I also believe that imuran does take 2-3 months to become therapeutic.

However, there are instances where a med can be at therapeutic levels but not be working. I think it would be better to test for disease activity/presence rather than just the med levels. Ie, blood work, fecal calprotectin, MRE, etc. My son is on remicade and his last test did show remicade at therapeutic levels, however, at our upcoming apptmt, I will be asking his GI for an MRE because I want to know that the med is actually doing something and that there has been a clear improvement.

The ticking timebomb cloud will dissipate as time goes on and your daughter continues to do well. My son has been mostly well almost since beginning treatment and, while any symptom/comment still causes my 'alert system' to flash, it doesn't flash quite so quickly nor does it immediately jump to RED ALERT!!! right away.

I really encourage you to try to continue with EN... not exclusively but as a supplement. I'm sure you've read about supplemental EN all over the parents forum and I really do believe it has helped my son remain in remission.

 

[Jmrogers4]

That's great I hope it continues for her. My husband has been on it for about 12 years and except for a few very minor flares as been symptom free.
Have you heard about buzzy bee? I know some of the younger kids have used it.

 

[Tesscorm]

Sorry, I was so slow in typing, I see you've already gotten responses.. :lol:

 

[Goofychicken]

Buzzy bee? Nope! What is it?

As for EN... Getting her to drink any of the shakes is impossible. She hates the taste of them. I've even tried mixing a bit of ensure or pediasure into her milk or chocolate milk and she can tell it's in there. Maybe we just need to work on building her taste for it?

 

[Jmrogers4]

I don't have any experience with buzzy bees but here's a website http://buzzy4shots.com/
Jack at first and for quite a number of years absolutely refused to drink them. It was not until he was faced with drinking or NG tube he decided to drink them and it still took forever and a couple of days over the sink, taking a sip, gagging and drinking a sip of water to wash the taste out and he was 13 at the time!
We used beneprotien prior to that it was supposed to be tasteless and it was but it did change the texture of somethings so he wouldn't eat/drink it but it worked well in smoothies, shakes, pudding, even mashed potatoes and he had no idea.

 

[Farmwife]

We have the Buzzy Bee. It works for Grace and my son. I think it's more of a comfort blanket then actually taking the pain away. It works for us.

My Grace is still On EEN/EN. She has a g-tube surgically placed. She could drink it but after she felt better she decided she'll have nothing to do with it. KIDS

 

[Tesscorm]

If you google Boost recipes, their site has quite a few recipes that incorporate the Boost shakes (i'm sure you can use any other shake as well). Also, Boost sells fruit beverages (like juice) and Boost puddings (I've never used these). Funny, (but, I'm so grateful) my son who has always been such a picky eater (even now!) has no problem with the Boost shakes or fruit drinks!

When my kids were younger, much earlier than S was even diagnosed, I used to split a package of Carnation breakfast shake between them. It's fairly thick, so I'd give each 1/2 a shake in a glass, diluted with milk - they just thought I was a cool mom letting them have chocolate milk with breakfast! :lol:

 

[Maya142]

Another option is Peptamen Jr - definitely doesn't taste as good as Ensure or Boost but plenty of kids get used to (I'm thinking of mylittlepenguin's son and my daughter). We initially used bribes to get her to drink them but now she drinks 2 a day, no bribes necessary. They have a strawberry flavor - it's my daughter's new favorite.

 

[DustyKat]

Thiopurine Metabolites is the blood test you are looking for. It will show the levels of 6MMP and 6TGN and it is according to these that the GI will adjust a dose up or down. Weight basing of doses has largely been replaced by this test, having said that the GI needs to start with some sort of measure and that is normally weight and the result of the TMPT test. I assume this test was done? It should be the initial test done when commencing Imuran, it will give an indication of the level present of the enzyme required to break down the drug.
As has been said, Imuran normally takes 3 months to become fully therapeutic but for some it can be as long as 6 months so you would not have an accurate measure of Thiopurine Metabolites if done too soon.
Until Metabolites can be done Liver Function Tests will give you an indication as to the drugs potency. It will not tell you if the drug is at the appropriate levels but it will tell you if the liver is managing the drug or not and this is essential at the outset and if doses change. LFT's should be done weekly for a month, then fortnightly for a month and then pan out to second monthly for the duration of the drug. Most doctors would recommend 3 monthly but my personal preference is 2 monthly.

This is a very good article:

How Do You Monitor Patients on Azathioprine/6-Mercaptopurine?

As to the clinical indicators of the drug working that would be things such as serum inflammatory markers CRP and ESR or the faecal inflammatory markers Calprotectin or Lactoferrin. Other bloods that would also show effectiveness would be normal levels of things like the White Cell Count, Platelets, Haemaglobin and Ferritin, assuming that your daughter’s bloods are an accurate measure of disease activity.

Another couple of things I will mention as a side issue…

I would recommend the use of the brand drug Imuran over the generic Azathioprine as this study clearly shows a considerably enhanced uptake of Imuran over Aza. If that is not possible then that is not an issue but I would also avoid switching between brand and generic due to the different uptake rates.

Bioavailability of Azathioprine v's Imuran v's 6mp

Also if your daughter ever has issues with the Imuran proving to be troublesome to the liver and the dose can’t be increased, I see the GI already has you on the maximum weight per mg ratio but that isn’t always set in cement either, then there is a drug called Allopurinol that can be used to alleviate the situation. It doesn’t always work but by introducing Allopurinol you must reduce the Imuran to a quarter of it’s original strength. So if you were on 100mg of Imuran you would drop back to 25mg. Doing this can reduce the load on the liver and the Imuran can remain a viable option if it is working. I’m not sure how the ratio’s would work in one so young though. :ghug:

Good luck mum, I hope all goes well!

Dusty. xxx

 

[Goofychicken]

Thanks Dustykat. Our lab schedule is a little different than what you have recommended. Our GI wanted once a month and our ped suggested every two weeks (she's more cautious and he's more fast and loose), so we settled on every 3 weeks during loading. It has been this way from the get go. He wants to see two or three more labs at the three week interval and if he's satisfied with her liver panels, we'll drop it to every couple months. Luckily we haven't seen any issues to date.

Oh and thanks for the resources! I'll read them tonight when I get home from work

 

[Cupkatemom]

So appreciate your post Dustykat!

Reese just had her blood panel to gauge the level of 6MP at the 3 month mark (2weeks ago). We thought she was in therapeutic range because she is growing/gaining again. Her levels were not yet where the doctor wanted them. We just increased her dose to 75mg from 50.

We have had lots of blood tests prior to this, but none tested for this specific level - just basic CBC and other things to check the liver and such.

 

[my little penguin]

To drink the shakes
Straws are your best friend they by pass the taste buds.
Also a lid like a sippy cup to hide the smell.
DS was 7 so old enough to comply but not old enough to argue .
Little kid en options
Kids boost
Pediasure
Peptamen jr
Peptide

Elecare
Neocate
E028 splash

Good luck
DS still drinks 2-3 peptamen jr a day to maintain weight and growth

 

[Mehita]

What part of labs does she freak out about? The poke?

We tried Buzzy Bee and like Farmwife said, it's like a security blanket. My 14 year old didn't fall for it though. It's all yours if you want it... just PM me.

My son always does Emla creme for blood draws and j-tips for his Remi infusions. You might want to ask about those. Our ped gave us a prescription for the Emla creme so we put that on at home before lab appts and are ready to go by the time we get there.

Our story with Imuran is similar to Jmrogers. Low simmering inflammation and then the ticking time bomb went off. He was at therapeutic levels, but he was still having symptoms. Unfortunately, it wasn't until he developed an abscess and fistula that his GI agreed and I was able to toss out the "told ya so" line. Listen to your gut, follow the labs, but... enjoy the down time too.

One suggestion, if you're not doing this already, create a spreadsheet and track all her lab values over time. I never used to think my son had a good indicator until I saw it in the spreadsheet and correlated numbers to his flare times. Turns out CRP is a good indicator for him. Now I only freak out when his CRP is off

 

[Catherine]

My daughter is example of why testing of levels are important and not going just on body weight.

Sarah is on 150mg imuran which is almost 3x times body weight. This has her at the low end of the range.

 

[Goofychicken]

She must have been a little dehydrated, because they were only able to get one of the two vials they needed - we need to go back for CBC, but good news! I got an email from the ped and she said the labs that came back were perfect! Liver function and ESR/CRP is normal! Phew!

Mehita - you don't want anything for the buzzy bee? I'll of course pay for shipping. I'll send you a message later today!