Medication - How do you ask?

[Catherine]

How do you ask your teenage/young adult whether they are taking their medication?

Sarah tells me she always taking morning medications? (which includes aza)

The GI has requested that I ask whether she always takes her medication.

She is 18 years old in less than a month.

If the answer is yes, the GI may double aza? To maybe 250mg per day.

After getting a opinion from a well known Australia researcher.

:frown::frown::frown:

 

[Tesscorm]

Stephen's supplements I put in those daily pill containers... easy to see if any are not taken.

My daughter's HGB fluctuates a lot, I'm constantly on her to take her supplements - she says she does???... But, I often wonder if she does and if the HGB fluctuations are related to her forgetting??? (She refuses to use the daily pill containers.) So, a couple of nights ago, I thought to count all the supplements in her bottle and then recount in a couple of weeks. As in your case, in order to know if something more needs to be done re her HGB, we need to 'accurately' know if she's taking supplements.

It's tough with this age... if you ask too often, they get annoyed but... sometimes they don't appreciate the importance of their answer. :ywow:

 

[DustyKat]

So are you concerned that he will up the dose when in fact she may be skipping meds and therefore getting false metabolite readings?

Okay. First up I just ask straight out with Sarah. If she says yes I have to take her word for it BUT if I had reason to doubt it, say symptoms etc, then I would discuss my concerns with her...

So, if say in my Sarah's case metabolite levels were on the low side and the doc wanted to up the dose I would say to Sarah...are you taking your medication. If she said yes and I had doubts I would straight out say that the doctor wants to know because they want to increase your medication dose due to low metabolites but they need to be sure that you are taking your medication every day because that is what they are basing their decision on.

With Matt he has his medication in a dosette so I can see if he has at least removed them. As to whether he then takes them well...as I said in another post...you could rule a line with him so I know they go straight into his mouth.

Dusty. xxx

 

[Catherine]

I actually believe Sarah is taking the medication (aza). She admits to forgetting to take the supplement at night about 1 to 2 twice a week.

The tablets are in a 7 days pill container which she is now filling herself.

I have ready been to see our chemist, the timing of the refills fits with her taking them. Aza 50 mg come in a 100 tablet box and we have got a refill every two months since January, he tell me she should be coming to the end of the box and should have used least half a box of 25.

The levels of aza in her blood have dropped since last test to 18 and her dosage was increased.

If she not taking the tablets she must be throwing them out but I can't see her doing this.

GI said to tell her not in trouble we just need to know.

If heard the GI right her level is only 18.

The levels are that low now the GI can't tell what her body is doing with the AZA.

I am at work, but if memory serves me correct it was 180 before the dose was increase.

 

[DustyKat]

Wow, that is puzzling.

Are both levels low?

Dusty. xxx

 

[Catherine]

I haven't seen the report, got a telephone call at work.

 

[Catherine]

Will be getting second opinion from Miles Sparrow? if Sarah's is taking the meds everyday.

 

[DustyKat]

Ah okay. Have this saved in my reading list. By Miles Sparrow no less!

As far as I know he is highly regarded.

• When do you need to measure thiopurine metabolites?

Measuring the nucleotides 6-TGN and 6-MMP is only useful in patients who fail thiopurine treatment and who are unable to enter and maintain a steroid-free remission despite an adequate dose and duration of immunomodulator therapy. Conversely, if your patient is well and tolerating thiopurine therapy, then metabolite measurements do not provide any additional useful clinical information.

• What do the results mean and how do we use them?

Measuring thiopurine metabolites effectively clarifies the reasons patients are not responding to immunomodulator therapy, and it identifies 4 groups of treatment failures (Table 9-2). The first group are patients with negligible or undetectable levels of both metabolites. These patients are likely to be noncompliant and can be questioned and managed accordingly. Confirming compliance before switching from thiopurine therapy is a justifiable reason for ordering metabolite testing. The second group are patients with low but detectable levels of both 6-TGN and 6-MMP. These patients are under-dosed and should tolerate dose escalation. The third group are patients with low 6-TGN levels and high 6-MMP levels. These patients have an unfavorable metabolite profile and are thiopurine “resistant.” Further dose escalation is unlikely to be successful. The last group are patients with therapeutic, or high, levels of both 6-TGN and 6-MMP, and ongoing active disease. This group is truly thiopurine “refractory” and will require a different class of therapeutic agent.4

• How often do you need to measure thiopurine metabolites?

The first set of metabolite measurements, which establishes the patient’s genetically determined thiopurine metabolite profile, is the most important, and these can be performed after approximately 4 weeks of therapy. The confirmation of therapeutic metabolite levels by any subsequent dose adjustments should ideally be determined by a further set of metabolite levels 2 to 4 weeks later. Subsequent metabolite levels are thereafter only necessary if disease remission cannot be established or maintained at any time.

http://www.healio.com/gastroenterology/curbside-consultation/%7B67faf0e0-974c-4f86-a430-d735ef89a8d7%7D/how-do-you-monitor-patie

 

[Catherine]

Thank Dusty

She was in Group 2, and she appears to have moved to Group 1.

But still really believe she is taking the medication.

 

[DustyKat]

I hear you Catherine. :ghug:

As it says...these patients are likely to be non compliant. It doesn't rule out that there are exceptions to the rule.

Dusty. xxx

 

[rygon]

Would it be best if the GI talked to her directly, instead of through you? She is an adult now, and maybe her answers would be different if she was talking to the professional rather than yourself. Also with a face to face discussion on her own the GI may get a better understanding of the situation, rather than having to use you for the questions and answers.

 

[Catherine]

Both the GI and I wait for Sarah to speak but she hardly speaks to the GI at all.

We go to school interviews, and hear the same thing at every interview. Sarah need to talk more, it would be good if she would ask more questions or took part in class discussions.

The GI does not want to damage the slowly building relationship with Sarah.

It also very hard for the GI to talk to her direct when she is a high school student. I am allow to take personal calls at work but Sarah can't at school.

Sarah health is very important to me but I can't afford to have a face to face consultant with her GI at the moment.

 

[Dexky]

Perhaps you could show her Dusty's chart w/o the description of "likely". Don't make it confrontational but make it seem there is no other explanation than non-compliance. If she is adamant that she's taking them you should be able to tell...I think.

 

[my little penguin]

One other thing
Ask if she changed how she takes it.
With food /milk ?
Closer to dinner etc??
With vitamins etc ???

 

[Catherine]

I have spoken to Sarah, she says has taken them everyday. I believe her. I have also counted the tablets and number seen to match with her taking them least 95% of the time.

She has always taken the tablets in the morning, with breakfast. She take a caltrate tablet at the same time. Twice a week she has a toasted cheese sandwich when she gets to school takes the aza with this.

This timing means she is taking them after strenguos exercise five morning a week.

Her last courses of pred was also taken at the same time as the aza.

 

[Catherine]

When we get the paper copy of results, Dusty's chart or very similar appear on the result sheet.

it should come in the mail next week and Sarah will open it read as it will be addressed to her.

 

[my little penguin]

I know milk so in this case cheese may cause an issue .
So two days missed a week plus two days milk ....
Maybe ...
Something to ask the doc about

 

[DustyKat]

Good luck Catherine. I hope they are able to find a reason why Sarah's results are off.

Dusty. xxx

 

[Catherine]

After much tablet counting she missing 6 doses of aza in the last 66 days.

 

[crohnsinct]

Wow Catherine that is hard. I agree I would preface the discussion with "no one is mad and you won't get in trouble we are just trying to understand the situation so we can make the right treatment decisions".

You mentioned she takes them at school after a workout. I am guessing that means the pill travels a bit. Any chance she is thinking "yeah I take my pill out everyday" but it is sometimes getting lost in the shuffle and she isn't really counting or remembering those days as lost dosages? I only ask because there is no way O would be able to travel without losing her pill...I am lucky she her head is attached!

 

[Tesscorm]

After much tablet counting she missing 6 doses of aza in the last 66 days.

I know almost nothing about Aza but it doesn't seem that missing 6 doses in 66 days should have THAT much of an impact??? I know it would certainly be best if she missed none but, do you think missing only 6 doses would throw her numbers off by this much?

 

[Catherine]

The pills only travel on Monday and Wednesday when she go straight to school after training. All other days she comes home from training and takes the pills at home.

They travel in a pill case.

I have spoken to her believe has taken them everyday. She understand how dangerous it would to increase the dosage if the problem is missed doses.

She dead against the next treatment which is a weekly injection.

I need to see the actual report.

New question how long does a dose of aza stay in the blood system?

I know she took the dose on the morning of test just as we were leaving home and blood was taken less than 30 minutes later.

 

[DustyKat]

For a drug that takes so long to become therapeutic I would have to wonder if it would be that sensitive to a missed dose/s???

Do you have any thoughts on this Aussie?

Dusty. xxx

 

[DustyKat]

Sorry Catherine, I had your thread open when you posted again.

I don't think Imuran stays in the blood stream itself for long per se but being an immunomodulator I imagine that the effects of the drug may remain in your system for some time after cessation. How long that is though I don't know.
The metabolites would give a more accurate picture of how the drug is affecting both the bone marrow and the liver hence why I don't think a missed dose would affect the overall picture but that is only my thinking.

Imuran is best taken with food. Imuran can irritate the stomach lining and therefore should be taken with food which serves as a buffer and reduces the irritation. The tablets may be crushed if necessary. There are no food or beverage restrictions. Imuran can be taken with milk. It does not interact with alcohol or tobacco.

If you forget a dose, take the normal dose of the medication as soon as you remember and resume your normal schedule the following morning. If you do not remember until the next day, skip the missed dose.

http://www.gihealth.com/html/education/drugs/imuran.html

Dusty. xxx

 

[Catherine]

Sarah 's results are all over the place

6TGN 18 previously 169
6MMP 438 previously 298
6MMP TGN ratio 24 previously 2

She fits a 2 groups according to the notes on the test results, 1 non-compliance or 3. thiopurine resistance.

GI will ring on Wednesday with action plan.

 

[DustyKat]

I don't like the thought of number 3 Catherine but if your thinking is right it seems that Sarah may be heading toward that path.

Good luck with the phone call hun, a nervous wait for you no doubt. :ghug:

In my thoughts, :heart:

Dusty. xxx

 

[Catherine]

The GI mentioned in her phone call on Friday that Sarah maybe shunting but she levels
were too low to tell for sure.

There was mention of allopurinol and a med given by injection, it was also said that aza was to good a med to give up on yet.

I was more concerned about asking the medication question.

I believe the reason for the second opinion is to see whether the right course of action is to increase aza to either get aza into range or confirm shunting and change treatment plan.

 

[Catherine]

Sarah is increasing aza to 150 mg from tomorrow, will retest aza levels in two months.

 

[Dexky]

Good luck Catherine! Has the GI given any indication what may be next?

 

[Catherine]

Hopefully the increase will give us idea of what happening.

Retest aza levels after two months.

1. With the aza levels higher they should be able in work out whether she is shunting, if so add Allopurinol.

2. If only a small increase aza again and retest.

3. Change med if no response

 

[Tesscorm]

Good luck! I hope the increase is enough to rule out any other concerns re dosing/levels.

 

[my little penguin]

Fingers crossed that it works !!!!

 

[DustyKat]

Good luck with the increase Catherine! I hope it does the trick for Sarah, bless her. :heart:

:goodluck::goodluck::goodluck:

Dusty. xxx

 

[Clash]

Good luck with the increase I hope it straightens things out!

 

[Catherine]

It only taken 21 months but sarah's aza levels are now in range.

Dose 150mg
weight approx 58kg

 

[kimmidwife]

Glad to hear it is finally in range. Is she feeling good?

 

[Mehita]

Woohoo!

 

[Catherine]

The seems to be well. Life is very busy. Mild anemia and white cells low end of normal.

 

[Catherine]

Here are the results. Latest results taking 150mg aza

6-TGN 291 (235-450 pmol/8x108 RBC)
6-MMP 1269 <5,700 pmol/ 8x108 RBC)
6-MMP/6-TGN 4 (11-20)

These latest results are called interesting but now in therapeutic range and non toxic range.

Just post previous results below to put comment in context.

Results from 125 mg

6TGN 18
6MMP 438
6MMP TGN 24

Results from 100 mg
6TGN 169
6MMP 298
6MMP 2

 

[DustyKat]

Hallelujah! And hoping, wishing and praying it stays that way! :heart:

Has Sarah finished her exams?

Dusty. xxx

 

[Catherine]

Sarah has done half her exams. Has second math exam on Monday. Decided it more important see her boyfriend today than study.

It very trying being her mother.

 

[DustyKat]

Ah okay, quite a few here have finished their HSC but the exams overall are still going.

Oh no! Every parent’s nightmare! A year 12 student with a boy/girl friend! :yfaint:

:hang: Mum!

Dusty. xxx

 

[zilla7777]

Good luck for her tomorrow on her exam! Mine is tomorrow too, we'll likely be sitting the same exam. Ahah. As Dusty said, hang in there! I can imagine how hard it must be on my Mother...

 

[crohnsinct]

So O and I sat on a parent/patient panel at an IBD Symposium put on by our clinic. The first question for the kids, "how do you remember to take your medicines"....O's response, "Well my mom usually sets it out in the morning and I forget. Then at night she comes into my room and won't leave until I take it". Not exactly my proudest moment. GI then went on to say we have to get the kids to figure a way to take their meds on their own no prompting...sure doc...how long has it been since your kids were young teens?

Good Luck to Sarah and zilla on exams!!!!!!

 

[Catherine]

Crohnsinct, Sarah is now remembering her morning meds, in fact she took in the car on the way to school this morning. She didn't have time to take them before in left as she didn't get up when her alarm when off. Afternoon meds are a different story. She remember to take them 2-3 times a week. I am starting to sound like a broken record.

Zilla7777, good luck with your exams, do you finish shortly. Only the year 12 with exams today are at school as the other year levels have Cup eve off. Public holiday tomorrow for a horse race.

Sarah has exam on Wednesday and she last one next Monday.

Dusty the boyfriend, live in Geelong, two hours by train away.

 

[crohnsinct]

Haha a public holiday for a horse race?! I gotta move! Although we have Tuesday off from school for a horse race...we call it election day!

Boyfriend two hours away is the best kind in my hubby's book. How did she meet him?

 

[Catherine]

Melbourne Cup has been celebrated as a public holiday in Melbourne since 1877.

Where I grew up we got a public holiday for Elmore Field Days. Machinery show is always good reason for a public holiday especially went you had attend with your father. My father, sister and I purchased a sewing machine for my mother on year. My father went another year on his own brought me a sewing machine for my 16th birthday. I got a lot use from that machine.

Sarah met her boyfriend at a school friend 18th birthday party near home. The problem with them being 2 hour apart is every time they see each other it a full day event.