Is medication or ENT able to keep inflammatory markers in the normal range?

[Charleigh]

We saw a research doctor at Chapel Hill in November. It was a great visit. E's inflammatory numbers (ESR and C-RP) have made an incredible improvement using the paleo diet and probiotics. His symptoms are great most days (some days/weeks are better than others, so he is not perfect by any means). His growth has been crazy good too. So I am pretty happy with our med-free choice so far. The research doctor was adamant that we need to see the inflammatory markers completely in the normal range though? He says that if E's numbers are not completely normal by February then we should consider meds or ENT to attempt to get those numbers down. At the same time, I have heard several comments that medication has not helped to achieve normal labs ranges anyway. So my question is...

If your child is on medication, are his/her lab results in the normal range? If so, which medication are they on?
I want to be informed and go into the February visit with some idea of whether it actually helps.

As always, thanks ya'll

 

[greypup]

Hi Charleigh

Sorry I don't have solid info for you as M has started Imuran in Nov. She also did a 13 day EEN in Dec bc she had some abdominal pain. I think we have since figured out that she was not taking in enough liquids and was dealing w/constipation and trapped gas which was causing major pain.

Her doc is very happy w/her blood work on the monthly basis that she monitors it but I honestly don't know if they are checking her inflammation markers.

Good luck finding your answers. I'm happy for you that you have been able to manage this far and feel confident!

 

[my little penguin]

The reason for the normal numbers is :
Inflammation can be simmering on the inside without serious outside symptoms doing lots of damage .
This can cause a very bad situation.
However if the numbers are slightly off but the symptoms are good and the imaging/scopes /fecal cal etc all match up with good that is another story as is what the kiddos history at presentation in terms of numbers.

My kids numbers are typically normal even when flaring so when they become elevated even slightly we proceeds to more intense monitoring
Scopes imaging etc..,,

He is currently on humira and his sed rate was 22 last blood draw( 20 is the end of normal )
But he just had surgery slightly before that so ...
A reasonable explanation of the higher number .

Good luck

 

[Tesscorm]

I think inflammatory numbers SHOULD be in the normal range when in remission, however...

Keep in mind that CRP and Sed Rate indicate inflammation anywhere in the body, not just intestinal. So, when my son has had bloodwork done, I have sometimes had to consider other injuries when looking at his numbers (more so his Sed Rate, rather than CRP).

I don't know this for certain but I think anyone's numbers can fluctuate outside of 'normal' at times and what's more important is a trend or 'average' (would explain why doctors often want to rerun a test on a 'healthy' person when a result is outside of normal before moving ahead with treatment). Prior to starting remicade (being on supplemental EN only), S's CRP and ESR fluctuated, even touched into normal range a couple of times but, typically, were above normal. Since starting remicade, is CRP has fluctuated, however, within normal range. His ESR has fluctuated from a low of 2 to a high of 30, well above normal, but this was 3 or so weeks after dislocating his shoulder... it may be related to the shoulder and not intestinal??? (waiting to see results from next test)

Fecal calprotectin would be a better indicator of intestinal inflammation.

I also look at Stephen's HGB - this was always low and has only reached normal levels since starting remicade. It not only has reached 'normal', tests have shown a small improvement at almost each time (again, trend/average is indicative of progress being made).

But, even looking at other indicators can be confusing because while his HGB and CRP are good, his WBC has been increasing in last two tests almost reaching maximum level - indicating possible infection??? (again, waiting to see next result...)

Did the GI mention an MRI or scopes before commencing on meds?

 

[Mehita]

This topic is always a tough one for me.

My son has never had impressive inflammation markers. For several years he hovered just slightly above the normal range but never had anything exciting enough for a doctor to notice or put him on meds. It was always, "let's just monitor and test again in a few months". He was dx with Celiac at the same time so he went gluten free immediately and that seemed to help a lot.

About two years later he started vomiting all the time. It got so bad that some weeks it was for 10-12 hours at a time, several days a week. With an MRE we discovered he had a stricture in his small intestine and based on the scar tissue, this had been going on for a long time. Low simmering inflammation, over the course of years (I think since dx) had finally built up enough scar tissue to cause this stricture. Our only option was surgery which he had at the ripe old age of 12.

I kick myself every day for not pushing his doctors to address the low simmering inflammation. Had I done so, I'd like to think we could have avoided surgery at such a young age.

He's on Remicade now after finding Pentasa and Azathioprine to not be strong enough for him. His labs are not only in the normal range for CRP and Sed, but also in the low to zero area. So, based on our experience, I agree with your doctor - you need to shoot for normal - or at least make sure it's not low simmering inflammation secretly wreaking havoc over time.

Another side note, our first (horrible) GI said kids with IBD will always have some inflammation. Ha! Not true! With the help of Remicade, my son has NO inflammation and without the inflammation he is finally growing, pooping, and acting like the rest of his peers.

The thing that sticks out to me in your post is that there is growth, so that makes me wonder, like Tess said, if maybe something else is inflamed and not the gastro tract?

Then again, there are still symptoms...

 

[Charleigh]

I think the plan is to scope before meds? I might be confused on that. E has great symptoms most of the time. When he is symptomatic, it is nothing like it was before the diet change, just some loose stool and stomach cramps. It usually doesn't last very long and 90% of the time we can connect it to something that was slightly off in his diet.

The research doctor thinks that we are great candidates for enteral because we are already sticking to such a tough diet.

I hate all of these decisions :/. It is nice to have this forum where others understand the tough decisions we have to make.

 

[imaboveitall]

I was/am one of the medication avoiders.

V was on JUST enteral nutrition as SOLE treatment for the first three years after diagnosis. Not exlcusive enteral; she ate food and got/gets formula feeds at night.
She ALWAYS had "simmering" inflammation and the doc begged me to allow medication. I refused until her quality of life declined.

As to her labs, her serum inflammatory markers, ESR was never done, CRP was often done and was always normal or barely above normal.
Hgb was low normal, iron always low, but all else NORMAL even when she landed in hospital in May 2013.

Now, her stool markers, lactoferrin and calprotectin were always very abnormal, however, did not align with her outward symptoms.
Example: lactoferrin was once 5200. She felt great and was asymptomatic at that time.
Very sick in hosp, lactoferrin was in the 600's. Still very high but it had been MUCH higher and she felt fine?

One year her lactoferrin was done right before sopes, it was over 4000, scopes were CLEAN. (She has small bowel disease so not seen on scopes).

 

[Clash]

C's CRP numbers haven't been a great indicator of what was actually going on inside. When they showed what would probably be considered simmering inflammation, just a tic above normal, he actually had severe inflammation. He wasn't very symptomatic at all, in fact we thought he had reached remission.

Fecal Calprotectin has been way more accurate to the level of inflammation, based on MRE and scope done at the same time of FC.

Now that he is on both Remicade and MTX, we have had normal CRP and normal FC results which have correalated with no symptoms at all, no flare of his episcleritis(an EIM of CD) and general over all feeling of being well. It took some tweaking to get to the right meds, dosage and schedules.