Update on Dusty's Matt

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Thinking of you Dusty. Wishing you and Matt a quick resolution to whatever is going on. Whatever this is, it will go away. Like everything else it will pass. I hope that you are not suffering too much. I heard someone say that when you have a child it is like part of your heart is walking around outside your body. Very true, no?
 
Thanks guys. :ghug:

Matt is getting along much the same, periods of good appetite and no symptoms interspersed with periods of decreased appetite and complaints of a sore stomach/just not feeling right. As far as I know he has had only one more episode of blood, small amount and fresh. His upper respiratory symptoms persist and are unchanged in severity.

FC was done last Tuesday, still awaiting results. Bloods done last Thursday and all are back bar Metabolites. CRP has increased further to 29 (2.9), Lymphocytes down to 0.5 and all else is blindingly normal, including Platelets, INR and Ferritin, although Iron is trending down.

His MRE is tomorrow. Different prep this time. He is to have one teaspoon of Metamucil in 150mls of water every 15 minutes for the two hours preceding the test.

Scope on the 19th May and the irony of the date hasn’t been lost on me! World IBD Day, how fitting. :yfrown: A different prep this time round with this too, he is to have two lots of MoviPrep.

So that’s where we are up to and while I want results I also don’t want them, Ugh!

Thinking of you all so much. :Karl:

Dusty. xxx
 
Dusty...I hope you get off this roller coaster soon. Up & down it is hard to plan anything.

I get the wanting / not wanting. It stinks the kids are going through this and with no clear answers you start to let the mind wander. Thinking of you.
 
Gosh Dusty, I hope they can get to the bottom of this soon. Its great that Matt has all the imaging scheduled right away and close together so you will have a complete picture. In the meantime it's so hard not to worry......will be thinking of you.
 
Thank goodness that is over! This MRE appointment has been nothing short of a PITA from the outset to the end. :yfrown: I don’t think I have ever said the phrase…it would be less painful to poke my eyes out with a pen…more than I have in the last month!

Over a month ago, when the IBD nurse rang me, I contacted radiology to ask if they do MRI’s. Being rural this is a fairly new service in our area so I rang to double check. The response was, yes we do. At that point I also asked how long the waiting list was and explained that it to be a week before his scope on the 19th May. I was asked to send the referral when I received it in the mail. No worries the wait was about 2 weeks. Plenty of time.

Receive the request in the mail the following week. See it is an MRE so ring again and ask if they do MRE’s. The lass on the desk wasn’t sure so asked that I fax the referral up. Again I explained when I needed to have the MRE done. Fax the referral up and ring the following Monday, 3 weeks ago. Yes they have the referral and yes they do MRE’s. Again I explain that the MRE needs to be done on the 12th May. No problem they say, we will ring back to confirm the date and time. Waited all week, nothing, give them an extra couple of days the next week, nothing. Ring again to confirm the date, the MRE is not booked as we don’t have a referral. Um yes you do you were looking at it last week and telling me all would be fine. Yadda, yadda, yadda….well can you please put in a tentative booking for the 12th. No we can’t do that because we don’t have the referral, um yes you do. But I can’t find it. Not my problem just do a tentative booking pending receipt of the referral tomorrow when I drop it in there!

Drop the referral in and told they will ring that day or next to confirm the date and time. No call received. Monday last week I ring again to confirm the date. No sorry, not booked. I explain the timeline of events and they transfer me through to the technician. Oh I’m sorry, the earliest we can do that is the 18th. Um no, we will be in Port then and Matt will doing his scope prep. Oh dear they say. At this point I asked if I was sounding really pissed off, to which she replied yes. Again I explain the timeline of events and she kindly books him into the slot set aside for hospital emergencies.

Arrive today all prepped up, do all the paperwork and the lass at the desk asks when he is seeing the specialist. Next Tuesday for scopes I say. To which she replies, oh that explains why we had to fit you in. Um, I beg your pardon? We had to fit him in. No you didn’t have to fit him in, you didn’t book it for the 12th like I asked 4 weeks ago nor numerous times since then.

Go down to the MRI room. Matt goes in and is in there for about 30 minutes and comes back out. Wow that was quick! To which he replies he hasn’t had it yet! What?! Well the technician asked if I had had two litres of milk for the prep and I told him no. Seriously? Didn’t tell him you have had prep though? No. Ugh! I go and see the technician and say what about the Metamucil? He says that is an older prep, now they use milk. But he has already had the Metamucil! Oh, I thought he hadn’t had any prep. That made for a very happy technician, and mother!, and finally the MRE was done but holy hell it took some time by the time he finished.

So yes, it would be less painful to poke my eyes out with a pen! :mad2:

Report should be ready in about 48 hours.

Feeling nervous about the report and the scopes but also wondering that even if all was to be well what are his chances of staying on Imuran given his Lymphocyte level. *sigh*

Dusty. xxx
 
Wow Dusty
Wow!
Never experienced anything like that at all.

What is the milk prep?
Just plain milk or milk plus something ?
DS is allergic to the prep they do here so ....
Always looking for alternatives
 
@mlp, just plain milk. :)

No other oral contrast just IV.

Since Matt has psyllium everyday he found the Metamucil prep a breeze and much preferred it over barium. I don’t find that hard to believe! :lol:

Dusty. xxx
 
OMG! What an ordeal. Thank goodness you took no prisoners and pushed them. It is just plain stupid we have to advocate for our kids like this. I worry about them doing this in adult care. Maybe listening to us nag & push & fight will get them prepared. Hoping answers come in 2 days and you aren't calling all over town for results. Hugs.
 
I have my results bases covered. A copy of the report goes to the GI and the GP, plus they can retrieve it online from radiology if there are any hiccoughs. The GP will email it to me.

Dusty. xxx
 
Holy hell, Dusty! Forget poking your eyes out with a pen I would've been poking theirs out, after the procedure was done, of course!
 
:voodoo: Disgusting! How do these people keep their jobs!?!?!? Especially in the medical field?!?

I guess most of us have felt your frustration! :voodoo: But, so glad, in the end, it was done.

I hope you get results quickly and that what's shown allows for a fairly easy fix! :ghug: :ghug:
 
:eek: Unbelievable! I sometimes wonder if these people in the medical field can tell up from down. :yrolleyes: Hang in there Dusty!
 
I have not had a brilliant track record with this mob but my options are limited given they are the only radiology available without travelling some significant distance. That’s not to say I haven’t had some very good experiences with them because I have.

If this latest episode had indeed turned pear shaped and the MRE was not done when I had asked I was going to make an official complaint, starting with them misdiagnosing Matt at the outset in 2010 and moving on from there, and believe you me a not so pretty exchange took place at that time. They wouldn’t remember it but I sure as hell do! :lol:

As it was they received the message loud and clear yesterday that I was displeased with how things had panned out over the last month. :eek2:

Dusty. xxx
 
grizzly-bear-mascot-head-vector-graphic-155565.jpg
Me, yesterday. :lol:
 
Dusty - hope the report is all good! Sorry to hear how difficult they made this!

@SupportiveMom - my advice is (where possible!) to not let your adult kids do this thing alone. Having to fight like this for appropriate medical care is tough and even adults can need help at times with someone to advocate for them - especially when sick. It's always been the biggest irony to me that you often have to fight hardest to get help when you are least able to but most need it.

Not to say you can't be an independent adult but that it helps to recognize that even grown ups benefit from someone to advocate for them at times and for us all to be open to that :)
 
So does that mean I will be going to GI appointments for the rest of my life with D? Oh she would just llllloooooovvvvvveeeee that (insert sarcasm here). She is already asking when she can go to her GP appointments alone. I think I have too independent of a kid. She has made it clear in no uncertain terms I am going to the GI appointments as long as she has this current GI. She is afraid she would say something stupid. She really doesn't like her.

me I'm happy to take my kid as an adult as long as she lets me. I wonder how many people have a parent or SO go with them.
 
@SupportiveMom - I was an independent kid who was happy to go see my GI alone at 17 (and my mom thought it was great that I wanted to take control of it all too) but we both changed our minds within one appointment when he morphed from a kind and seemingly helpful doctor to a mad man ranting at me when I asked if he thought I could try dietary therapies for Crohn's (something he'd mentioned at an earlier appointment). That's coloured my view somewhat obviously! As have too many of the doctors I've had over the years who have these episodes. I don't think it has to be a parent who accompanies or that you need to play an active role but it's nice to have someone there to turn to and say "wait, did he/she really just say that?" It may be playing it safe, and I finally have a team of GIs that I'll see alone (except my somewhat temperamental but otherwise brilliant surgeon, classic bedside manner at times) but on average I believe you get treated better by doctors when there is another person present. FWIW my many hours sitting in the waiting rooms of adult GI clinics over the last 19 years say that the vast majority of IBDers take a parent, partner, adult child or friend into the appointment with them. But hopefully it won't be a lifetime of GI visits...call me mad but I'm optimistic ;)

p.s. sorry for chatting on your thread DustyKat!
 
Thanks for that input 24601! I will remember that.

I think you are right because my friend was recently in the hospital with gallbladder problems. She was either in so much pain or so drugged up that she couldn't concentrate on what the docs or nurses were saying let alone keep it all straight a few days in (complications). So I became her gate keeper. I even caught the nurses/aides trying to feed her an hour prior to her surgery and had to remind them that she was NPO. I also had to rattle a few cages looking for test or imaging results (this hospital is notorious bad with follow through and communication). It got to a point where she wanted me there all day every day until she got out.

Glad you pointed out the benefit of having your "person" there at routine visits as well.
 
My personal belief is that whilst ever a patient is willing, no matter the age, they should be accompanied to every specialists appointment regardless of the discipline. It is always better to have that extra set of eyes and ears in the room and you complement each other in one picking up what the other may miss. It also allows for a post appointment discussion and for thoughts to flow on how each interprets what has been said. It really comes into its own if it is an appointment where bad news many be given. It is understandable for a patient to be overwhelmed by a diagnosis or change of treatment and from that point on in the consultation ‘switch off’.

My kids go to the GP alone but I accompany them to specialists. They are happy for me to do this and do look for me to do it. I don’t take control as such but rather give them the freedom and responsibility to conduct the consult in the way they wish. I will speak up if incorrect information is given or I feel a topic hasn’t been discussed or appropriate questions asked.

I do always ask if either would like to speak privately and offer to leave the room.

Dusty. xxx
 
Dustykat,
I agree with that! Even adults should not go alone when it comes to specialists.
Glad Matt is done. Sorry you had to go through all the craziness. Hopefully the results come on time as promised!
 
I go to all Sarah's GI appointments. Maybe hard now she in the UK.

I attend most of my husband's specialist appointments, his specialist is currently seeing him every 8 weeks, so I miss a few.
 
F***

MRE results are back...

Comment: Diffuse thickening and enhancement of the distal ileum extending from the enterocolic anastomosis and extending for an approximate length of 27cm proximally with increased mesenteric vascularity. Findings likely suggest changes of recurrent/residual Crohn’s disease. Enhancement of the wall and increased mesenteric vascularity suggest active Crohn’s disease. No significant proximal bowel obstruction or mesenteric abscess is seen.
Click to expand...

The rest of the small bowel, stomach and abdominal organs are normal.

Dusty. :(
 
Oh Dusty,
So sorry that you and your family are having to deal with this. May you soon have more info about options and next steps. :ghug:
 
Really sorry to hear Dusty. What a nightmare MRE!!
Hope you can get this under control quickly and that Matt feels better soon :ghug:
 
Sorry to hear this Dusty! :ghug: Hope they can get Matt's disease activity under control quickly! Do you have an idea what the treatment options will be?

Also so much yes to everything you said about us all benefitting from another pair of eyes and ears at specialist appointments! Even with an entirely helpful doctor it's always great to have someone else to remember what was said and what questions should be asked and have someone to discuss it with later. I make a slight exception with my current GI because I email with him and have his mobile phone number so anything I want to check or that I think of afterwards, I have the ability to do that, as well as open invitation to all clinics. But so often we have these relatively brief and spaced out appointments and having someone else there helps to make the most of those opportunities which are critical to our treatment and the course of our disease.

I'll stop rambling about that subject now but it just happens to be one of my hot topics. I also believe you should be wary of any doctor who doesn't want you to have someone accompany you to an appointment - there are some who don't like it and in my opinion that's not likely to bode well for their attitude towards patients and illness.

Really hope Matt will be feeling better soon!
 
Oh man Dusty! So sorry to hear this. I was really holding out all hope that this was just a blip. Crohn's Sucks:voodoo::voodoo::voodoo:
 
Dusty all I can do is send virtual hugs to you and yours.
Update when you can, I know you have a lot on your plate.
 
Dusty,
Sorry to hear. Glad you got the results quickly. Hope they come up with a plan and get things under control quickly!
 
I'm so sorry to hear this. :( After so many good years, must just feel like a sucker punch to you and Matt! :ghug:

Wish I could say or do more than just send virtual hugs and tell you I hope it can be brought under control very quickly.

Sending lots and lots of hugs and thoughts your way! :ghug: :ghug: :ghug:
 
:yfrown:Oh Dusty. I am so sorry to hear this news. That is not good.

What is next for Matt? I hope it is not surgery. Makes me sad.
 
I know I have had a dream run when it comes to my two post surgery, but needless to say this has dredged up a lot of old feelings and fears of those days pre surgery. :(

I would be lying if I said this was unexpected even though I was hoping beyond hope that the result would miraculously return as normal. I must admit though that I am a little surprised and concerned at the length of bowel affected.

As to Matt, he is going on much the same. I haven’t actually told him the result yet as I didn’t see much of him yesterday and I have yet to print it off. I shall do that today and speak with him tonight.

I don’t know what the way forward will be or what the GI even thinks or does in these circumstances as this is uncharted territory for us. It has been a number of years since we have had the…we will do this and if that fails move to this talk. Plus it is a new GI to boot.

My own assumptions would have to be that he will commence Prednisone to bring things under control, I don’t even know what this GI thinks about EEN or if Matt would be willing to go down that path, and then move on to a biologic. I would have to think that Imuran is now off the table as would this flare not suggest a failure of the drug? Plus there is the issue of the decreased Lymphocytes that have now reached the borderline at which the drug should be ceased should they fall any lower. *sigh*
I am now at that crossroads we all find ourselves at in not wanting to give up one scary drug for another! :lol: Or for the newbies, not wanting to start them n the first place!

Lastly, thank you guys so much for all the kind thoughts and wishes. It truly does mean so much to know that there are others out there that get it. :ghug:

Dusty. xxx
 
Imuran I would think has fail Matt and would be off the table unless you could increase the dose amount but didn't it need to be reduced because the blood levels were too high. May you could try using the other drug (sorry can't remember it name) to shunt it.

You could look at MAP treatment?

Assume there is enough small bowel involvement to allow the use biologic when you add the amount involve now and the amount remove by surgery.
 
Hmmm...this reminds me of a conversation I had with O's GI way back at the beginning. It was when she was super close to finishing Prednisone. I needed just a tad more but the script was for a larger amount. I asked if I should fill the larger script or if they could write one for a smaller amount (waste not want not). He said I should fill the larger amount because if she flared we would probably do a stint of prednisone. When she later added EEN he said the same thing...hit future flares with a course of EEN.

So at the time this made me think that it is possible to have a momentary flare and get it under control with steroids and such and go back on your merry way with your maintenance med. But that would assume they can tell the difference between a med failing and a flare...I guess maybe our doc treats as a flare and then if they can't get it under control declare the drug a fail?

I am sure Matt's surgical history and his lymphocyte issues changes this a bit but just thinking out loud.
 
Sending my support. I know this has been rough. At least you gave some answers to move forward with. Sounds like prednisone might be the only quick fix until a maintenance drug can start to work. The doc give any suggestions or ideas of next steps? Glad there are no assesses or strictures.

How is Matt doing with the news? I hope he is handling it ok.
 
I would think Imuran would be off the table
If he was having a little bleeding or numerous BM etc that would be a "flare "
But damage showing up to that extent on an mre probably shows things have not been good for a while without symptoms
Maybe I am wrong

Good luck with the scopes
Hopefully that will give the GI the compete picture
Hugs !
 
Matt hasn’t seen the GI yet.

When all this started the doc was just about to go overseas so he upped his Pentasa as an interim measure. We waited a couple of weeks and then started the tests two weeks out from his scope which next Tuesday the 19th. He will see the GI next Tuesday pre and post scope.

He already had his 6 monthly appointment booked for the 4th June and we were advised to keep this in case he needed to see him for histology review. Based on his MRE result I imagine this appointment will remain. I am guessing the GI will do something next Tuesday to treat the inflammation and then perhaps discuss his long term treatment options on the 4th when he has all the results in front of him??

Which ever appointment time is the most appropriate to raise particular topics then I will be broaching EEN, MAP, a horizontal shift of meds within the same class and biologics. And yes, I don’t know what the options for remaining with thiopurines will be given his lymphocyte count. He has had no trouble metabolising the drug so upping it wouldn’t be the issue, just the blood counts. His latest metabolites are still pending.

Matt had 28cm of bowel resected and now has 27cm affected. Sarah had 68cm resected back in 2006.

Dusty. xxx
 
Sorry mlp, posting at the same time.

My surprise at the length of bowel affected has me thinking the same way as you…this hasn’t just happened in the last couple of months or so.

Dusty. xxx
 
Just a question... I don't recall if Matt has ever had an FC test?? If you and MLP are correct in that this has been happening for a while, it seems his labs didn't reflect that until very recently, fairly close to when he started showing symptoms. Just wondering if he's had FC tested and if it reflected anything 'off' sooner than his labs? I'm assuming no test or you would have followed up a high result immediately.

Won't help anything now but, certainly a confirmation that both labs and FC tests should be regularly done. :(

:ghug:
 
Biologics are hard to get in Australia, is that right?
Just wondering if he would be able to jump to Remicade or Humira to avoid more surgery...
:ghug:
 
He has never has an FC done Tess.

We discussed FC at his last appointment, in December, and the GI said he has found that FC doesn't correlate well as a marker for inflammation in small bowel disease. He only does them when he schedules scopes.

When I received the pathology request from the GI a month ago it didn’t have FC listed so I had the GP do one. The results are pending, it was done Tuesday last week.

Dusty. xxx
 
The FC test results usually take 10-14 days. The timing of FC should pretty much match with the MRI which is good.
 
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@Maya142.

We have the same system as the UK. Because approved biologics are covered under the PBS, so heavily subsidised by the government, there are very specific guidelines as to their being prescribed. I would imagine that Matt shouldn’t have an issue being prescribed them due to his surgical and medication history.

Dusty. xxx
 
DustyKat said:
Sorry mlp, posting at the same time.

My surprise at the length of bowel affected has me thinking the same way as you…this hasn’t just happened in the last couple of months or so.

Dusty. xxx
Click to expand...

I was thinking the same thing. That has been going on for a while. :stinks:
 
Dusty,

I was thinking about you guys. I have been on Humira for 4 years next month. I started it about 8 months post surgery. It took that long to get approved for it. When I started Humira I also had a colonoscopy that showed new inflammation at the anastamosis site. The Humira was able to beat back that inflammation and put me in remission, which I continue to enjoy to this day.

I just wanted to stress that while a biologic is indeed a scary thing to consider, many of us have had good experiences with them. I know the risks involved, but for me the benefits have out weighed the risks.

I hope things begin to turn around soon for you and Matt.
 
I think it's good that you've done the FC test. I understand your gastro's point of view but I have small bowel disease and for me it's my only inflammatory marker these days so it certainly has a role to play for me. I hope it proves helpful for Matt.

Also when Matt had surgery did they measure the length of his small bowel? Or perhaps give an estimate from the scan. I think it's good to have that info mostly so it's not a surprise at a later date. Doesn't change the aim of the game of course which is preserve, preserve, preserve. Would be crazy not to approve biologics for him.
 
24601 said:
Also when Matt had surgery did they measure the length of his small bowel? Or perhaps give an estimate from the scan. I think it's good to have that info mostly so it's not a surprise at a later date. Doesn't change the aim of the game of course which is preserve, preserve, preserve. Would be crazy not to approve biologics for him.
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Not that I am aware of 24601.

I spoke with Matt about his results last night and he has read the results of his bloods and MRE. He didn’t say much, he was more interested in what was for tea. I guess we have different priorities. :lol:

Dusty. xxx
 
DustyKat said:
Not that I am aware of 24601.

I spoke with Matt about his results last night and he has read the results of his bloods and MRE. He didn’t say much, he was more interested in what was for tea. I guess we have different priorities. :lol:

Dusty. xxx
Click to expand...

Tea? See in America's he would have wondered about coffee.:yfaint:
 
:ack: don't get Dusty started on Aussie lingo... she'll be all about fair dinkums, bubblers, Noras and roots! :lol:

Dusty - am so glad Matt took it in stride. ALWAYS so hard to give your child bad news. But then, he has good reason to take it in stride! He's got the best mum advocate anyone could ask for!!! ;) He KNOWS he's in good hands - why stress when mum does it for you so well?!?! :D

Sending lots of wishes that it can be brought under control quickly, quickly, quickly!!!
 
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Stone the flamin crows Tess! :lol:

Okay, and I quote:

Lower-middle-class and working-class people, especially from the North of England, the English Midlands, and Scotland, traditionally call their midday meal dinner and their evening meal (served around 6 pm) tea, whereas the upper social classes would call the midday meal lunch (or luncheon), and the evening meal (served after 7 pm) dinner (if formal) or supper (often eaten later in the evening). In Australia, the evening meal is still often called tea, whereas the midday meal is now always called lunch.
Click to expand...

So what I am saying is, I ain’t no upper class bitch but rather just a half breed Aussie that has bastardised the English language. :tongue:

Dusty. :eek:zythunder:
 
LMAO!! Well, who would think a meal could be so complicated! Lunch, dinner, tea, whatever... as long as it's a nosh-up on the barbie, I'll be there with bells on!

Half breed Aussie, eh? Hogwash!! You're nothing if not dinky-di!

;)
 
Well I'll be by this definition I'm upper class......:dance:

Lower-middle-class and working-class people, especially from the North of England, the English Midlands, and Scotland, traditionally call their midday meal dinner and their evening meal (served around 6 pm) tea, whereas the upper social classes would call the midday meal lunch (or luncheon), and the evening meal (served after 7 pm) dinner (if formal) or supper (often eaten later in the evening). In Australia, the evening meal is still often called tea, whereas the midday meal is now always called lunch.

Gotta let y'all go, storms a brewin and got to get my towels off the line across my barn yard.:D

Any again so sorry about the results......man can we get off topic.:eek:
 
Hey Dusty! Just sending mega hugs and letting you know I am praying for you guys today! :ghug: Hope the news is better than expected!
 
Well the scope confirmed what we pretty much knew. :(

Matt struggled with the prep a bit, as in getting the amount down in the prescribed time. He was a glass short of the 2 litres but he was well running clear by then so it made no difference. His appointment was late in the day, 4:30pm, and they rang for me to pick him up at 7pm. By that time he was the last one there so while he was in the recovery room the GI came out and spoke to me in the waiting room.

The inflammation is mild to moderate and chronic in nature and as a result he does not want him on Prednisone. He has no large bowel disease. He is to switch up to a biologic and it will be up to Matt to decide whether it will be Humira or Remicade. He has spoken to Matt about it and it will be further discussed on the 4th June as the histology results will be well available by then.

In the meantime we are to carry on as is. Matt has been out of sorts and I don’t know if it was the prep, what the doc spoke to him about or both but now we are home again he seems to be in good spirits. Aside from the prep days he has been okay symptom wise, appetite good and no blood.

I am in the process of formulating an email with a list of questions for our next consult so I think I will create a new thread and ask the brains trust to help me out so I cover all my bases. :wink:

Dusty. xxx
 
Oh, I forgot to mention that I received his FC results on Monday.

Faecal Calprotectin ug/g > 300*

BRI (</=50)



CALPROTECTIN IS HIGHLY ELEVATED.

An unexpectedly elevated Calprotectin should be followed up with

endoscopy or radiology.



BRI = Biological Reference Interval
Click to expand...

I was a bit pissed that they didn’t give a specific number above 300 but hey ho, it’s better than nothing and something to work with when monitoring progress.

I also received his Metabolites this morning and I’m not sure what to make of the numbers. The GI wouldn’t have had these results on Tuesday so I don’t know what his thoughts are.

TGN 281
Units: pmol/8x10*8 RBC

6MMP 104
Units: pmol/8x10*8 RBC

6-thioguanine nucleotides (6-TGN or TGN) are active
metabolites of azathioprine and 6-mercaptopurine.
Concentrations above 235 pmol/8x10*8 RBC are
associated with greater efficacy in inflammatory
bowel disease. Significant leucopenia is more
likely above 450, but can occur at lower concentrations.
Unexpectedly low levels of TGN (in the context of an
adequate prescribed dosage) can indicate poor
compliance.
6-MMP is a thiopurine metabolite. Concentrations
above 5700 pmol/8x10*8 RBCs are associated with
hepatotoxicity. If the ratio of 6-MMP to 6-TGN is >20,
therapeutic concentrations of 6-TGN may not be
achieved with a dose increase.
6TG and 6MMP are now quantified by LCMSMS
Click to expand...

He last had them done in December and they were fine, good solid numbers as has been the case since the outset. Whilst his TGN is considered a good enough number he has always been at least double this number as has his 6MMP (both in the 500’s) and it is in this context that I am making my observations. Non compliance is not the issue, whilst he may occasionally miss his morning meds he never, or almost never, misses his evening meds which contain the Imuran. His LFT’s are great so no liver issues feeding into it.

What are the chances that diffuse thickening of a mild to moderate nature would affect absorption to that degree?

Is Imuran in the process of just not working anymore?

So this has happened in the last few months and coincides with the flare. His lymphocytes are a low despite low 6MMP numbers so I can’t see a dose escalation being on the cards unless Allopurinol is added??

Now that his 6MMP is much lower than usual will his lymphocytes recover whilst still taking Imuran?

My questions are just me thinking out loud but any input would, as usual, be welcome.

Of course this may be all hypothetical given his current situation.

Dusty. xxx
 
Hi DustyKat

We have always get a number for faecal calprotectin.

Our GI response to Metabolites levels was to increase Imuran dose but I don't know whether that would be possible with the lymphocytes level.

I don't think adding Allopurinol would help because of the levels Metabolites. Sarah's GI said something about have to get the Metabolites levels higher to see whether they are a shunter? first.
 
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Sending lots of good thoughts your way. I hope you get the next steps sorted out quickly and I hope Matt is feeling better soon.
 
My son's lymphocytes dropped too low after only a few weeks on Azathioprine. He was then put on 6MP but they dropped again. After his recent flare he is now on weekly Humira, tapering steroids with the plan being to add in MTX once he gets down to 20mg Pred. Hope you get answers and a clear plan soon.
 
Just catching up Dusty, I'm sorry to hear that things are rough at the moment. Hopefully they will be able to start the biologic soon and get Matt well on his way to better. Sending warm thoughts.
 
Good luck at the appointment tomorrow...or is it 6/4 already over there...I will never get used to the time difference. :kiss:
 
Hi Hope you get a way forward soon.

My son(16) was diagnosed at 12 did EN pred pentasa then aza. 2 years on aza and lynphocytes dropped too low so had to stop. that count has been low for 18 months. 4 months ago after routine scpoes we ended up with terrible results - severe inflammation so on to pred for 11 week course after 5 days IV and they added remicade ( could have had humira) - went with that as no needles except every 8 weeks. Has been a miracle so don't doubt that at all!

Good luck
 
Thank you so much for all the warm wishes and thoughts. :heart:

The appointment was a very lengthy one, I guess near to two and half hours, but a productive one. All the photos of the scope were viewed, the histology results discussed and all the questions I sent answered, ended up being 26 in all and the GI was tolerant enough to ask if there were any more I had. :lol: He has already sent a letter to the GP about the scope and histology so I shall obtain a copy of that.

After much discussion about treatment options, including the pros and cons of each and their potential side effects, Matt has decided to go with Humira. The application was completed and this will take about 3 weeks to process. He has elected to go with the pen over the syringe. The IBD nurse gave him a dummy run through the process and also his Humira pack with all info and other stuff in it and a travel pack. We will go back when the script arrives for him to have his initial doses and be taught to self inject. He will do the next lot of loading doses and continue on from there fortnightly. Then back on the 20th August for review again and hopefully signs that it is working so a 6 month renewal can be made.

He is to continue with his current medications regimen with Lymphocytes being closely watched. If all goes well Imuran would not be withdrawn for 2 years.
He has some stricturing at the operation site as would be expected and inflammation is present in this area and proximal to it as evidenced in the MRE. It was because of this that the GI did not want to use Prednisone. He felt that Prednisone would have the potential to complicate matters as it may create further scarring in an already narrowed area.

Both the GI and nurse were very good and upbeat with Matt and as usual Matt was very pragmatic. He said very little and asked nothing. He was pressed somewhat about how he was feeling about it all as they both acknowledged to him that it can be overwhelming, he just said…well I have to do what I have to do and that’s that..and then added…I just do as I am told!

He has been a tad up and down emotionally but I can’t expect any different and imagine that won’t change as he strives to come to terms with things.

Dusty. xxx
 
Well I'm glad that's over and you guys have a direction.:rosette2:
I hope it works and works fast for him.


Can I ask for the reason you decided on Humira over Remicade?
 
I hope he gets quick results. Tell him not to get discouraged by fatigue with the loading doses. It takes a few months to get a body used to it.

Sending hugs down under.
 
Dusty, am sorry that the appointment was necessary at all but glad the appointment was productive and that a firm plan is in place.

I hope the humira does the job quickly and that Matt find the self injections tolerable. :ghug:
 
Good luck!! Hope it works like magic!!

My daughters always iced before and after the shot and that helped some. They also chose the pen because it was easier. They liked to watch TV while doing the shot to distract them.

Like Pilgrim's daughter, my younger daughter also had a lot of fatigue with the loading doses, but once she got to the maintenance dose, she was absolutely fine.

Sending hugs.
 
Glad to hear that the docs were so thorough with everything. I truly hope humira does well for him!
 

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