Update on Dusty's Matt

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Hi Dusty,
Just checking in after vacation. I am curious about how much surveillance Matt had between is Imuran and last scope. Did he have a yearly scope. MRE? Also, my GI said that the FC did't correlate well with upper GI inflammation (same as your info), yet, it does correlate with Matt's inflammation now. Are you going to follow his FC with future tests? Does it make sense?

My daughter had a FC of 125 in March and was told that the doc didn't think she should get another "mostly reflects what's going on in the colon." I am wondering if we should push for another one.

Good to see you are back. I hope things go very well for your Matt.
 
Poached Pear, my son's disease was located at his terminal ileum and upward a bit from there. FC has been a great tool for him. We had one FC the same time as scope and MRE which gave us a baseline and showed that all the results correlated well.
 
Thanks again guys. :ghug:

@Farmwife: The choice of biologic was up to Matt. The GI told him that in scheme of things there was little difference in efficacy between the two and that covered the question I had asked about the choice coming down to location of the disease and a history of fistulising Crohn’s. With that in mind in came down to the different delivery between the two. So the obvious to us was put to him…
-Remicade: 6 times a year with the need to go to the oncology department to have it administered via an infusion. The loading doses would have to be done at the normal rate but after that they could do quick infusions, the nurse had already sussed it out with the local hospital. There would also be an hour of observation post infusion. Being rural we don’t yet have infusion centres so it would be done at the rural referral hospital 20 minutes away.
-Humira: You do it yourself at home but the trade off is 26 needles a year.
I know Matt doesn’t like hospitals and IV’s full stop so I am assuming that is why he chose to go with the Humira. And the pen over the syringe would be because it is automatic as such and he doesn’t have to deal with the ‘needle and syringe’.

Thanks Pilgrim and Maya142 for the heads up about fatigue. I would have to say that this is the probably the most troubling symptom for Matt at present. When they told him that so many of the patients they see feel so much better and their energy levels improve significantly when switching to a biologic Matt said…cool. That one word from him speaks volumes in how it must be affecting him.

@Poached Pear: No he didn’t have scopes done yearly nor imaging. His surveillance up till now was purely clinical and observation based. I must add that during this time his old GP left the practice for a political career and this a new GI. If Matt hadn’t flared now he was scheduled for a scope this year any way.
Regarding FC, I had a lengthy chat with the GI about this at his last check up in December. The GI was of the opinion that FC in small bowel disease doesn’t correlate well with endoscopic findings. By that he was meaning that he sees too many patients with normal FC’s that on scoping show active disease. As a rule though he does FC regardless of disease location when scopes are scheduled but not as a regular surveillance tool with small bowel disease. When I received the pathology request FC was not listed so I had the GP do a request for it. Given that he had a positive FC result then I will continue to use it as a surveillance tool to monitor both response to treatment and maintenance of remission as it proves it is useful in his case. All that said I do personally believe that FC is not as reliable a marker for small bowel disease as it is for large bowel disease. I do feel it is highly individual and hence why it is so important to know the nitty gritty of how your child’s clinical results match with what you see in front of you. In our case my daughter’s bloods essentially reflected nothing of the war that was being waged within her so perhaps she would be one for which FC proved futile as well? My son’s bloods on the other hand show everything and often before it is reflected in his well being. Perhaps with his level of sensitivity he is one for which FC in small bowel disease is as reliable as it is in large bowel disease.

Dusty. xxx
 
I would only add that my son's inflammatory markers are like Sarah's and show nothing of the damage being done inside but so far fc has been a useful tool. Also, I do worry since it is small bowel disease and CD is not static everything is always changing(my son started with symptomatic flares but the year before his surgery his was completely asymptomatic) that the usefulness of fc may not always be reliable for us.
 
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Just wanted to add for Poached Pear that my disease is only in jejunum and ileum and FC is my most sensitive inflammatory marker and for me can be significantly raised, and correlates with MRE, when bloods show nothing at all. But agree that with this disease it seems it can all change - I used to have raised markers in bloods but not any more.
 
Hi Dusty!
Humira is a good med. The trick I use to decrease the pain from the injection is to take it out of the refrigerator at least a half hour before the injection. It helps to warm up the med.

I hope it works wonderfully for Matt.
 
Hi Dusty,
So sorry to hear your news, but hopefully the Humira will be great for Matt. FWIW, we went round and round with LJ for over 2 years switching meds and doctors. Finally was able to move his care to CHOP. They put him on MTX right away & Humira a few weeks later (dang insurance approval) and it has all really given him his life back. He gets a lot out of the MTX, that kicked in for him within a few weeks, the Humira of course took longer. He prefers the syringe, being able to control how fast you put it in helps with the sting. It does hurt, but it's over quickly. The MTX injection really doesn't hurt at all. As already said, we do take the Humira out 30 minutes ahead of time. There are lots of Remi fans here, but for us, you can't beat the convenience of doing a quick injection at home.
Also, LJ really didn't have any fatigue or issues with the loading dose. Best wishes & prayers sent your way!
 
^ yeah, when discussing possible next steps for our younger daughter our GI explained that if the kids are younger he uses Remicade but if they are older teens or in college he goes with Humira as it is much more convenient for their scheduling etc.

This school year we really started to feel the pinch with Remicade and O is getting a little antsy over the missed school and such. No evening or Saturday appointments. Even that wouldn't help much though with her schedule.
 
^true CIC
Our GI also said that they prefer to have their college kids on an injection over oral because the kids will still do an injection where lots seem to "forget" to take the oral meds once on their own.
 
@DustyKat - I just found this thread after Tesscorm referred me to it. I wanted to send my support to you and your son. I cannot believe what you have been through and your strength is just amazing. Your family is blessed to have you. Plus your sense of humor is just awesome :)

Reading your story/journey with your son reminds me alot of me and my son. They are both the same age and seem to have a similar disposition. Your son has been through alot more upfront than mine as it were, but are in the same spot now w/ Imuran no longer effective and new biologic decisions. My son is to the point where he just wants to "not feel like hell every day."

Anyway, I just wanted to send my support your way as you all continue through this madness. I hope you are achieving stability and get some much deserved relief and peace.

All my best.
 
I’m so sorry to hear about your boy theresad. :ghug: But I have seen your thread about starting Remicade and you are right, they sound very similar indeed! I do hope with all my heart that it works wonderfully well for him and he soon finds long a lasting relief, bless him. :heart:
 
Update:

The IBD nurse rang us on the 25/6 and the Humira script came in exactly on the 3 week mark. We went down for an appointment on Monday, 29/6.

The nurse gave the first two injections and Matt gave the last two. He said they stung more than he thought they would but it didn’t last. He will do the next two loading doses before moving to his fortnightly one. He has had no side effects at all thus far. :)

He had bloods done Friday 26/06 and surprisingly enough they are the best they have been since December. CRP not normal but very close to it and Lymphocytes have climbed back up to a much more acceptable level. He was quite upbeat in the lead to starting Humira and I will admit that it did surprise me. Thankfully that upbeat feeling has remained post loading loads.

He has another appointment with the specialist on the 30/07 and then a major review on the 21/9.

Onwards and Upwards!
Dusty. xxx
 
So glad to hear it's gone well! And that he's been in good spirits throughout! No doubt his mum has helped in keeping that positive spirit going! :D
 
Matt did his second loading doses last Monday with no issues. Was happy that there only two this time and is even happier that it will be one next time. :ybiggrin:

Bloods due next week as we head back to the GI the week after.

Is he any better? I don’t know. I have asked him and he says he feels the same but he hasn’t complained of any pain, appetite hasn’t increased significantly but then he isn’t saying he doesn’t feel like eating and I think the fatigue isn’t as bad. But maybe it is all attempt on my part to keep my bubble intact! :lol:

Time will tell no doubt.
Dusty. xxx
 
I hope time tells that things are turned around and long, stable remission is your reality for years to come!

Who knows on the CD side if Humira is working magic on our end but the rheumatologist thinks it's working it's tricks on that end so I am hopeful!

C still isn't as keen on humira as he was Remicade but doesn't say as much about having to do the shots (started in February).

Hopefully humira is kicking CD butt for both our boys!
 
Hi Dusty - hard to tell with these boys 😄 my son has his second loading dose on Tues, and I keep asking him if he feels any improvement (fatigue, appetite, pain). I get a lot of "I dunno, I guess?" Argh....

I think we should trust our instincts and observations, and if it's just a hope bubble I guess that's ok too! I notice slightly more interest in eating (AKA I have to do less nagging) and he does seem to have more energy and better mood? I guess it all takes time and little signs of improvement are better than its been in awhile, so I'm going to take it!!

Keep the faith and positive thoughts your way!
 
theresad said:
Hi Dusty - hard to tell with these boys 😄 my son has his second loading dose on Tues, and I keep asking him if he feels any improvement (fatigue, appetite, pain). I get a lot of "I dunno, I guess?" Argh....
Click to expand...

I so feel your pain! It’s like getting blood out of a stone! :ybatty: :lol:

I hope your observations prove to be spot on hun and your lad is responding, bless him. :)

It will be an interesting journey for us both and even more so given that our boys have started it so closely together. :thumleft:

Dusty. xxx
 
Yup....like getting blood out a stone is right!! I now depend on the "eh""s and "!"'s in his texts to alert me to trouble or good news!!

Hoping the humira/remi works wonders for your kids!
 
Well so far so good thus far…

Next shot due Monday which will see the start of his one injection fortnightly regimen.

We head back down to see the GI this coming week and with that in mind the GI ordered bloods be done this week. The results have been returned and all that were out of whack or borderline are heading in a positive direction. His CRP is close to zero (NRR <5.0), Lymphocytes have risen again this draw (from 0.67 to 0.77) and his iron level, which has been sitting at the lower end of normal for some time has more than doubled (from 9.8 to 22.7 this draw??). The only thing that remains out of range is Eosinophils at 0.92.

After this coming visit with the GI his next visit has been set down for the 24th September. I will have FC done before then.

He played his first game of soccer today after a 4 week scheduled break, it is also his first game since starting Humira. After the game he said he felt it was the best he has played
all year but he is still playing his cards close to his chest and not conceding that Humira may be the reason for it. I agree though that it is best not to count our chickens before they are hatched.

And the icing on the cake is Matt turned 22 on the 22nd! Hoping Humira is a long and lasting present to well being for him! :)

Onwards and Upwards! :heart:
Dusty. xxx
 
That's great news! So glad he's feeling good and most importantly hooray for beautiful lab work😄 what a joyous update Dusty!!
 
Happy Birthday to Matt. And wow isn't it amazing when our boys hit their 20's. This person who used to be a teenager is actually a great guy! :)
 
Thanks so much for the birthday and well wishes everyone. :):):)

@Farmwife - He is prone to seasonal allergies and I have thought about the fact that he continues to have a snufflyness about him that has been present for some time now and perhaps this is what is feeding into the persistent elevated reading??

@hawkeye - Yes, university is in full swing. Second semester started 4 weeks ago.

Dusty. xxx
 
Dusty fwiw
With Ds pollen season even when his allergies are under control
His eos bloods are always high ( except if he is on pred )
After pollen season they go back to normal

Allergist told us that was normal for atopic kids no biggie

Happy birthday to him !!!
 
Great news that he's responding to humira so well!! Lots of wishes that it continues for a very, very long time!

And, a very happy birthday to him as well! :D
 
It's so good to hear that Matt is doing well.....does the heart good to hear them say they feel well and have the energy to play!!! I hope the Humira continues to work as it seems to be doing so according to his lab results!
 
Glad Humira seems to be working for him. My son had high eosinophils for about 6 months last year. The GI wasn't too concerned. He has seasonal allergies and his asthma was bothering him more than usual too. It's back to normal at the moment. Hope your son has a happy and healthy Golden year. :)
 
Just back from the follow up with the consultant and the IBD nurse and they are happy with Matt's progress. :) He has now been on Humira for one month.

His flare up symptoms were never severe in the scheme of things so I think obvious in your face improvements will be hard to pick. Matt felt he didn’t really feel much different but when the right questions were asked and he thought about it he has realised there have been changes for the better. I too have seen positive changes…Looks better (better colour in his face and the dark circles under his eyes are gone), less fatigued, better appetite and no pain.

Next consult is the 24th September, that will be a more extensive follow up as it is the major review for his Humira approval. Hoping all continues to go well until then!

Onwards and Upwards! :heart:
Dusty. xxx
 
That's great C has a follow up the 18th. It will be 6 mos on humira for him. We too won't really have anything outward to gage since he's asymptomatic. He'll have repeat scope done in late Oct for that. But his rheumatologist was inclined to believe there was improvement on the joint side.

So hope Matt continues going strong with continued success!
 
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That is such good news! I think sometimes it's difficult for them to see the changes in themselves and it is more obvious to us...especially the skin colour and appetite! So glad he is doing better.
 
Finally back for an update. Things have been a tad all over the deck at our end, hence the absence. *sigh*

Anyway, looking at the date of my last post means we have had three further GI consults since then with the last being the 18th February. As far as Matt goes things have been pretty stable. I have had niggly feelings that there has still been room for improvement but with nothing to base those feelings on. His Iron studies were trending toward iron deficiency anaemia in October and after Matt giving a flat out refusal to have an infusion, very odd for him, he did end up conceding to have his Ferinject infusion a couple of weeks later. This improved his numbers but didn’t really improve his feelings of fatigue.

He has continued to cruise along and remains on Humira. I have been tossing up a couple theories over the past few months for my feelings and they include: Humira taking the extreme period of time to fully kick in. The stress of completing his thesis, Matt doesn’t really buy into this one but I think he may not fully appreciate the correlation between stress/fatigue/health. And finally the stress of having Sarah living at home, they do get on famously but it really is a case of polar opposites…Extroversion meets Introversion…and both at the extreme ends of the spectrum.

However, last night he did say to me that he has felt better and more energised over the past couple of weeks. The things to change in that time are his thesis is completed, or close to it, and Sarah has moved out...to Japan! He is meant to move away to continue his studies at the end of this month but I just don’t see him meeting that deadline.

His bloods are looking fab, all well within normal range. Even his lymphocytes have crept back into normal territory, the first time in years.

I have continued with him having FC’s done. I know I stated previously in the thread that I was disappointed with the first FC result as they only provided a number of >300. I did end up sending an email to the company stating why I was displeased with the way they reported their results. His result two months after starting Humira, September last year, was 281 and his result at the end of last month was 24. :) Interestingly, when I received the results last night his very first FC, done in May last year, now shows an actual numerical value: 2318 u/ug.

Dusty. xxx
 
DustyKat said:
I have continued with him having FC’s done. I know I stated previously in the thread that I was disappointed with the first FC result as they only provided a number of >300. I did end up sending an email to the company stating why I was displeased with the way they reported their results. His result two months after starting Humira, September last year, was 281 and his result at the end of last month was 24. :) Interestingly, when I received the results last night his very first FC, done in May last year, now shows an actual numerical value: 2318 u/ug.

Dusty. xxx
Click to expand...

What! So glad they are doing so much better!
 
Glad things have settled down, that FC result is fab. Glad things are going well. Sarah moved to Japan? Wow, my daughter would love to go to Japan!
 

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