Liver enzyme concerns

Ok...so some positive labs this week for Matt ....but of course they come with the usual concerns....so Put on your thinking caps everyone as I'm seeking some knowledge again!
So the labs.....we have had an issue with high liver enzymes and that has not changed...now the good news....
Prometheus tests suggest only UC and not Crohns......sigh of relief...
Sed rate back to very normal..at 6
Anemia...gone
WBC count down to 2.9 which concerns me a bit..I know 6mp is supposed to reduce WBC and that's kind of the point..but 2.9. Seems very low.....
So Prometheus reveals a good therapeutic result..365 6TG which is perfect...BUT.....high 6MMP(the toxicity count). So as we discuss this the Doc tells me that he suspects this high 6mmp level is the reason for the liver enzyme issue and he refers to it as "mild hepatitis"....didn't want to hear that.....even though I know it means the same thing as high liver enzymes.....
So then he tells me that it's remotely possible it is liver disease(though not likely) since Bilirubin is normal.......LIVER DISEASE??? When did that possibility enter the equation?? So he says that sometimes liver disease accompanies UC. .???? Why is that? If UC involves the immune system attacking the large intestine...why would liver disease ever become A factor? My concern here is a chicken and the egg argument.....does liver disease sometimes accompany UC for some medical reason? Or does liver disease present sometimes in UC patients due to current medical treatments..ie.....6mp and the like.......could We be creating a liver issue by taking 6 mp?
By the way ..based on the tests we have reduced the 6mp in an effort to improve the 6mmp levels and hopefully settle the
Liver enzymes ......thoughts everyone?
I'm specifically hoping someone has knowledge of the connection between liver disease and UC.....
Thanks all

Not a doctor so take my comments accordingly and discuss with doctor.

1. Prometheus test for UC/CD is not considered very reliable by most ped GI's. If it says you do NOT have IBD it is probably right. Beyond that it's reliability is suspect. Clinical presentation and findings from other tests like scopes/biopsies should determine diagnosis.

2. WBC could definitely be depressed by 6-MP. What is normal range shown on lab results? What did doc say about this? Did he call for re-testing in a week or two? Was a diff done? If so were the proportions normal but overall count low or was one kind of leucocyte low?

3. You don't say how high the 6MMP was. Definitely could cause elevated liver enzymes. Hepatitis technically just refers to inflammation of the liver, don't panic.

4. The GI is probably referring to PSC - Primary Sclerosing Cholangitis.

UC and PSC co-occur in about 5% of people with UC according to this article:

http://ibdcrohns.about.com/od/psc/f/pscibd.htm

and diagnosis can be difficult unless you are being seen at a major medical center/IBD specialty clinic according to this article:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994832/

PSC does not appear to be caused by treatment for UC but is a separate condition that for unknown reasons is associated with UC more often than is statistically expected.

Reducing 6-MP should improve liver inflammation. How soon is doc re-checking?

UC ws the finding by clinical diagnosis and Prometheus was just another test to help confirm that finding so the dr was not relying on that alone.
My understanding of WBC is that 6mp not oly could depress the WBC but is supposed to....so the low WBC doesn't bother me....just seems to be way low.....it is below the normal range(as it should be) just not sure how low below that range we would like it.....
The 6mmp was not real high. ...5900.....so just a bit above the number believed to promote toxicity....
My big curiosity is what does the liver have to do with UC? You state it is unknown ....I'm suspicious of the 5 % chance of psc......and it's causes......I am extremely uncomfortable with pharmaceuticals and their products as I firmly believe profits are the #1 concern.........my worry is that 6mp...or remicade....or humira..or whatever could be behind this risk. To me, the Large constant supply of these drugs would be a more logical suspect then just an unknown correlation to UC.......I guess I'm just fishing for someone who may have insight into this......
Is there any one reading who has experienced this psc phenomenon? What was your outcome?

No, the overall WBC should not be below the normal range as I understand it. That is why they do labs - there is a balancing act where they want to keep it within normal limits while keeping it from rising above those limits.

Regarding PSC - The % of people with PSC who also have UC is very high - up to 80%. PSC treatment consists of managing symptoms largely with steroids and, if necessary, surgery and eventually liver transplant. The association between UC and PSC predates the use of immune suppressing meds and may be a manifestation of the underlying autoimmune dysfunction.

Given your concerns about the meds, if you haven't already considered using EN you may want to look into it now.

Thanks.....I'll ask about the WBC then..
We did research EN..not something we think will work out at this point given his age..

Dutch, I am sorry I don't have good specifics but what I can tell you is our ped GI said there is a good percentage of people who have both IBD and liver disorders and they are not necessarily caused by the drugs. No one in my family had IBD before my daughter but my mother had auto immune hepatitis and her dad has a fatty liver. So our doc is suspecting that O will probably develop a liver disorer at some point given the family history. I did recently read something about the correlation but am on vacation not using my home pc. When I get home I will see if I can find it and send it to you. I think I remember there being a higher correlation in PSC in boys and in auto immune hep in girls but don't quote me.

All that said, our doc said the Remicade also puts her at an increased risk of liver issues but what are our choices?

Thanks ...I appreciate your insight....enjoy your vacation!

Hey Dutch,

PSC is an extra intestinal manifestation of UC and that is it's association with it, it is not due to treatment as it is an inflammatory disease. Those with Crohn's are susceptible to it as well but to a lesser degree than those with UC and of those with Crohn's there is large bowel involvement. So as you can see the common denominator is disease that affects the large bowel. It does affect males more than females.

Another member here has a boy with PSC, Dexky. Unfortunately he hasn't been around for the last couple of months so I am hazy as to what drew the docs attention to it but I think it may have been elevated liver enzymes and the increased bilirubin causing the itchy skin sensation???

Good luck! I hope tweaking the meds brings the liver enzymes back into line.

Dusty. xxx

Sorry, mean't to list the extra intestinal manifestations (EIM's) of IBD that can affect the liver/pancreatic systems...

Hepatopancreatobiliary

Primary Sclerosing Cholangitis (PSC)
Small Duct PSC
Cholangiocarcinoma
Cholelithiasis
Autoimmune Hepatitis
Primary Biliary Cirrhosis
Pancreatitis
Ampullary CD
Granulomatous Pancreatitis

As a general rule EIM's, of any description, are more common for those with large bowel disease than those with small bowel disease only...

The records of a series of 700 patients with inflammatory bowel disease, 498 with Crohn's disease and 202 with ulcerative colitis, have been analyzed to determine the relative incidence and characteristic features of their extra-intestinal manifestations. The group with Crohn's disease included 62 with colitis, 223 with ileocolitis, and 213 with regional enteritis. A consideration of the clinical patterns and an understanding of their pathophysiology suggested a subdivision into two main groups: one "colitis related" and one related to the pathophysiology of the small nonspecific third group. Group A, colitis related, comprises joint, skin, mouth, and eye disease. The complications might be immunologically determined, were closely associated with active inflammation, and often responded to medical or surgical treatment of the underlying bowel disease. They occurred in 36% of the entire series of patients: joints were involved in 23%, skin in 15%, and mouth and eye each in 4%. Pyoderma gangrenosum was observed most often in ulcerative colitis and erythema nodosum most often in granulomatous colitis. The incidence of Group A complications was higher in disease involving the colon (42%) than in disease restricted exclusively to the small bowel (23%). There were interrelationships among the various members of Group A, with multiple manifestations occurring in a third of affected patients. Group B, related to small bowel pathophysiology, includes malabsorption, gallstones, kidney stones, and non-calculous hydronephrosis and hydroureter. Disorders in this group were generally related to the severity of the disease in the small bowel and tended to persist even in the absence of active inflammation. In contrast to Group A, this group occurred most frequently in small bowel disease, and least in colonic disease. Malabsorption was virtually confined to the patients with small bowel disease (10% incidence), while gallstones and renal stones were also both more frequent in Crohn's disease (11% and 9% respectively), the latter usually in association with small bowel resection or ileostomy. Group C, found in a small percentage of patients, consists of nonspecific complications, including osteoporosis (3%), liver disease (5%), peptic ulcer (10%), and amyloidosis (1%).

http://ukpmc.ac.uk/abstract/MED/9579...EI00UGJuTIJv.0

Click to expand...

I pulled that quote from an old post of mine and the link is no longer working.

Dusty. xxx

Thank you.....again.....I'm jumping the gun a bit....because no reason to believe I'm dealing with this.....but I like to research possibilities before they happen...seems to make understanding the dr a little easier.......at this point bilirubin is normal...knock on wood.....so we believe it's irritated by the high 6mmp....

Hi Dutch. I totally agree on the advanced research thing. Check this out and see if it helps.

http://www.crohnsforum.com/showthread.php?t=9747

Dutch941 said:

Ok...so some positive labs this week for Matt ....but of course they come with the usual concerns....so Put on your thinking caps everyone as I'm seeking some knowledge again!
So the labs.....we have had an issue with high liver enzymes and that has not changed...now the good news....
Prometheus tests suggest only UC and not Crohns......sigh of relief...
Sed rate back to very normal..at 6
Anemia...gone
WBC count down to 2.9 which concerns me a bit..I know 6mp is supposed to reduce WBC and that's kind of the point..but 2.9. Seems very low.....
So Prometheus reveals a good therapeutic result..230 6TG which is perfect...BUT.....high 6MMP(the toxicity count). So as we discuss this the Doc tells me that he suspects this high 6mmp level is the reason for the liver enzyme issue and he refers to it as "mild hepatitis"....didn't want to hear that.....even though I know it means the same thing as high liver enzymes.....
So then he tells me that it's remotely possible it is liver disease(though not likely) since Bilirubin is normal.......LIVER DISEASE??? When did that possibility enter the equation?? So he says that sometimes liver disease accompanies UC. .???? Why is that? If UC involves the immune system attacking the large intestine...why would liver disease ever become A factor? My concern here is a chicken and the egg argument.....does liver disease sometimes accompany UC for some medical reason? Or does liver disease present sometimes in UC patients due to current medical treatments..ie.....6mp and the like.......could We be creating a liver issue by taking 6 mp?
By the way ..based on the tests we have reduced the 6mp in an effort to improve the 6mmp levels and hopefully settle the
Liver enzymes ......thoughts everyone?
I'm specifically hoping someone has knowledge of the connection between liver disease and UC.....
Thanks all

Click to expand...

I do not take 6MP whatever that is but, my enzymes have been up and I have too much bile acid and it makes it burn when I go to the bathroom and it causes acid refux and gall stones of which I have a huge one. But, it isn't blocking a bile duct, so they leave it alone. For some reason crohn's does affect liver enzymes. Mine were 40 points higher than normal, but the Doc said you don't have to worry unless they are much higher than that. Like 600. I wish I could be of more help, but this is what I know from my own experience. Good luck and God bless, Teresa

but I like to research possibilities before they happen

Click to expand...

Same here! Forewarned is forearmed! :biggrin:

@crohnsinct...:facepalm:...thanks for posting the link. I totally forgot about that thread! Who stickied it??? Not me! :shifty-t: :lol:

Dusty. xxx

Hi Dutch,

1. Did they do TPMT testing prior to utilizing 6-MP? If so, what was the result?
2. Was ALT, AST, or both elevated? And were they tested BEFORE the start of 6-MP to find his baseline?
3. With the elevated 6-MMP have they brought up the idea of lowering the 6-MP dose and adding Allopurinol? Though I'm a little concerned as his 6-TGN level is borderline therapeutic and that could decrease it.
4. I've read articles such as this one where the doctor won't do the metabolite testing UNTIL they get the WBC low so yes, reducing the WBC is therapeutic. I don't know the cutoff for "too low" though, sorry.

1. Did they do TPMT testing prior to utilizing 6-MP? If so, what was the result?
2. Was ALT, AST, or both elevated? And were they tested BEFORE the start of 6-MP to find his baseline?
3. With the elevated 6-MMP have they brought up the idea of lowering the 6-MP dose and adding Allopurinol? Though I'm a little concerned as his 6-TGN level is borderline therapeutic and that could decrease it.
4. I've read articles such as this one where the doctor won't do the metabolite testing UNTIL they get the WBC low so yes, reducing the WBC is therapeutic. I don't know the cutoff for "too low" though, sorry.

David,
We did Tpmt testing prior..but only to establish if he was an at risk patient...i don't recall the result but I recall it indictated he was not one of the 3% who would be at risk
His alt and ast were tested from diagnosis on....prior to 6mp and while on steroids they were fine....upon introduction to 6mp they raised...when 6mp was raised...they spiked. We reduced 6mp to current level and they came down to just slightly elevated but now they are in a stall pattern. We have reduced 6mp again by 10 %.... By 4 mg per day (down from 39)
I thought his therapeutic levels were good per conversation with doctor.....per the dr..they are great so I'm assuming there's room for some reduction???
Also ...we have been told that Allupurinol is not an option ...and he states he would rarely use it on a pediatric patient...I'd have to research reason but I know I discussed it in past posts....
My other concern is ALP which skyrocketed upon introducing 6mp and has nt really come down........however, we are told that alp is often high during bone growth...and puberty...so perhaps healing his colon and restoring his nutrition intake maybe kicked his puberty into gear and resulted in high alp...
I may be panicking a bit ....I was not aware of psc and it was a bit of a slap in the face when the topic came up......
Thanks for your reply......
Don

Also...I mis typed his 6tgn...it was much better than previously stated...at 365
I'll edit the original post

Ah, 365 is MUCH better Shoot, with that, they could likely reduce his 6-MP levels even more in an effort to get the labs in better ranges.

How is his folate level?

I'm curious why the doctor doesn't want to use Allopurinol. Here's a little reading for you. It sounds like your doc is really on top of things though so I'm sure there's a good reason. I'd just be curious is all.

I know you are not going to use allopurinol.
But how would they know psc unless they really reduced the 6-mp.
DS did that merry go round for over 6 months.
only when we decreased by 75% and added allopurinol did we see any decrease in his liver numbers even then anytime we increased to get back to therapeutic levels the numbers would spike again.

He was at 50 mg . dropped to 12.5 mg for a week - liver #'s went down. Symptoms got worse.
added allopurinol he got slightly better but not enough . increased to 25 mg liver numbers went up way too high.

I would question the psc unless they took him off the 6-mp for at least a week to see if the numbers could stabilize.

I agree with david there were more than a few safety studies on pediatric in Kansas or some where else out west that we read and the go read prior to putting DS on it.

Don - ok we are 6mp failures over here. Never got therapeutic and after about 18-20 months, Claire's liver said NO MORE. Our doc did try the allopurinol/reduced 6mp route for us. You've had enough scares that I don't want to add to but I will say if you go that route, you want LOTS of bloodwork in the beginning week to make sure everything's copacetic.

How high are the liver enzymes? When are you repeating? What is the docs plan if you have to quit 6mp.

If I have learned anything on this wondrous crohns merry-go-round, it's that flexibility is key to maintaining your sanity. What works one day, may not work forever. Please don't think I'm a pessimist!!!! I'm just saying it WILL be okay eventually, it's just not ok today.

Agree with Dusty, wish Dex was Around to talk PSC. His son is doing GREAT on Humira though and his liver is happy happy happy.

Big hug - hang in!

J.

Ok..I should clarify....we haven't been told psc is an issue.....it's just something that came up as a remote possibility and it shocked me as I hadn't heard ofit prior.....at this point everything indicates a minor 6mp toxicity but doc did mention that possibility as psc does affect UC patients .so he warned me about potential for liver biopsy down the road.....
David ...I'm not sure we've ever tested for folate......I'll request it......what does folate level suggest? M ....and I'll ask again about Allupurinol concerns and when I do..I'll update so everyone here has his opinion be it logical or not......
Also.....the plan if 6mp fails is of hot debate...the drs plan- Remicade
Our plan? - LDN first...

Dutch,

Haven't jumped in earlier as I can't offer any advice, just understanding. My son's liver enzymes were also elevated at his last test. Unfortunately, these were the last tests being performed at his 'ped' clinic and we're now waiting for his first 'adult' apptmt (not until October!! :ymad.

Do you recall what Matt's numbers were? We were told by our GP that while Stephen's enzymes were elevated (Alt 100, AST 62), they were not dangerously high but did warrant 'monitoring'.

So, completely understand your worries... not letting myself become overwhelmed (yet :blushby a new concern but, that new concern, is always lurking.

Good luck :ghug:

Dutch941 said:

David ...I'm not sure we've ever tested for folate......I'll request it......what does folate level suggest.

Click to expand...

There's a study out there about milk and folate levels affecting 6-MP. With milk inhibiting and folate acting more like allopurinol.

If he hasn't had his folate levels tested, I assume vitamin D and vitamin B12 haven't either? If not, ask for those too and any other vitamin/mineral tests they're willing to do. But those three are the biggies.

David, I went through every lab...we do check vit D every so often...it was low during active inflammation but is Improving now that he is better.....lat test was 32....... By now should be even better. We have not had folate or b12 checked...I did ask for it once and the doc poo poo'd it ..if I recall he stated he didnt suspect it would be an issue and that the results wouldn't change the treatment we were doing so I recall it didn't get done.......I'll ask again.
Tess,
His alt and ast spiked when we increased 6 mp to 50mg.....at one point over 100 also....but we quickly dropped down the 6 mp and they came back down.....currently they are at like 60 alt and 40ish ast......the dr...not overly concerned but stated that it is becoming a concern because they have stayed high for a period of several months......

You want vitamin D levels to be above 50 and 60-85 is even better. At 32 he should be on supplementation. Unless he has been spending a lot of time in the sun without much clothing and zero sunblock, I don't suspect it will be anywhere near optimal which you definitely want.

Your doctor is completely and utterly wrong about vitamin B12. Don't let them poo poo that one, demand it and don't waver. B12 deficiency in people with Crohn's disease is rampant and proper supplementation not only helps symptoms short term, but avoids major health issues longer term.

Give his body all the tools it needs to fight this disease. Get his vitamins and minerals into optimal ranges, not just "low normal" ranges.

Will do......we do a d supplement as well as a b12 supplement....I'll have All checked with next labs.
U mention they're important in Crohns s...what about just UC?

Woops, brain fart on my part. B12 deficiency in people with UC is much less common. I'm really sorry about that. I'd still get it checked though.

Folic acid (800 mcg per day) -- Many people who have ulcerative colitis have low levels of folic acid in their blood. In addition, some medications, such as sulfasalzine, may cause levels of folic acid in the body to drop. People with ulcerative colitis also have a higher risk of developing colon cancer, but some studies have found that taking folic acid can reduce that risk. Folic acid can mask a vitamin B12 deficiency. If you take folic acid for a long period, your doctor should monitor your levels of B12.

Click to expand...

Source

How many IU's of vitamin D does he take per day?

He takes citracal...1100 IU ....he was ordered to take oscal D...but I learned (possibly from one of your posts??) that it is wise to take magnesium to aid in vit d intake..and oscal d has magnesium as well....
It's been awhile since it was tested..I'm guessing it's significantly higher than the 32 result on the last test.......

Agreed on checking the vitamin levels. Claire's doc checks them every time. When things are "normal", we check everything every 2 months. More often when not normal or my Mommy ESP warrants a phone call.

We take 1mg of folic acid daily and the combo calcium/vit D combo. That's worked well for us.

You've received a lot of good advice. I hope that your child's situation resolves quickly. I don't see anyone has suggested talking with your GI about trying Methotrexate instead so you may want to consider bringing up that possibility if you are concerned about going to Remicade.

In the meantime, here's a compilation of information I have posted in the past on another forum that provides information about administering 6-MP that may be helpful to you and to other folks following this thread.

Patricia

6-MP: Good Things to Know

Compiled from directions received from physicians and supplemented with information from various medical and drug websites for personal use in managing dosing/administration of 6-MP for treatment of my child’s Crohn’s illness

This med has a long list of drug interactions and you should use a drug interaction checker to double check this, especially if your child is having elevated liver enzymes. Among the listed common drug interactions are the 5-ASA meds commonly used to treat Crohn’s and UC (Mesalamine formulations like Pentasa, Asacol, Rowasa, Lialda)

For those with Lactose allergy/intolerance note that this med contains Lactose

Adminstration (ideal):
Same time each day
On empty stomach 1 hour before meal or 2 hours after meal
May be taken with food if needed to avoid nausea;
May be given at bedtime to reduce mild nausea
Do not give with milk or milk based products
(there’s an enzyme in milk products that breaks down 6-MP)

Missed dose: give within 12 hours otherwise wait for next regular dose

If the child vomits after taking it:
If it is within 15 minutes give a second dose
If it is more than 15 minutes wait for next regular dose

Call doctor and report:
Vomiting
Rashes
Unusual bruising
Chicken pox exposure

Call the doctor for fevers:
If 101.5 or higher once within 12 hours
If 100.5 twice within 12 hours

Side effects may include nausea, hair loss, rashes, low blood counts, liver damage, pancreatitis

Monitoring

Expert recommendation (Dubinsky) regarding how often to monitor for low blood counts with CBC w/diff:
every 2 weeks x 2 then
every 4 weeks x 3 then
every 8 weeks x 4 then
every 3 months

Dubinsky recommends following the same schedule for liver panel (ALT, ALP, AST, Billirubin, Albumin, Total protein and possibly GGT); others check liver function less frequently once dose titration is finished but most watch liver function closely during dose titration.

Theraputic/toxic ranges of prometheus values for 6-TGN (therapeutic metabolite) and 6-MMP (potentially toxic metabolite) are generally quoted as:

6-TGN below therapeutic range <235
optimal range of 235 to 450
toxic range >450
6-MMP below 6000 generally believed to be OK
above 6000 generally viewed as potentially toxic levels

Not all doctors agree that Prometheus metabolite testing is needed and not all insurance companies approve this testing.


Allopurinol:

Some doctors use allopurinol in combination with Imuran to boost 6-TGN levels. Allopurinol blocks one of the pathways for inactivation of 6-TGN thus increasing the amount of circulating 6-TGN. When used in combination with Allopurinol, the Imuran dose must be reduced to 1/3 to 1/4 of usual prescribed levels.

Milk Thistle (natural herb not to be confused with milk from cows):

There is mixed research evidence showing that Milk Thistle reduces elevated liver enzymes in a variety of clinical populations. In the only pediatric research that has been reported, pediatric cancer patients receiving 6-MP as part of their chemo regimen had significantly lower levels of AST and trends toward lower ALT and Bilirubin after 56 days of treatment with Milk Thistle. There is lots of anectdotal reports of Crohn’s patients finding this successful. So you may want to talk to your doctor about using this supplement.

Patricia. You are a wealth of info. Thx for sharing. Do you know if taking azathioprine with milk is ok?
Dutch hope things for your son get heading in the right direction soon.

No it is not. See the part near the beginning under Administration.

VERY interesting about the milk thistle Patricia, thank you!

I have been following the milk thistle for a bit now....we have a whole bottle in the cabinet....unused....
Reason:
In addition to its alleged liver healing potential it also is alleged to effect puberty....apparantly it somehow effects hormones in a way that may affect puberty..what we cant confirm Is how much...because my son is 13 and has missed out on a year of growth already due to UC we are Leary of adding anything that might impair his puberty progression.......otherwise we would have already been using milk thistle as it sounds promising..

Are you guys being seen by a doctor who specializes in pediatric IBD? One who is working in a Pediatric IBD Clinic at a major university/medical center/tertiary care center?

Growth failure is not typical of UC. As in 88% of kids with growth failure have Crohn's and no more than 12% are UC (most estimates are more like 94% and 6%). When you say he has "lost a year of growth to UC" what exactly do you mean?

How sure are you of the UC diagnosis? What exactly did his diagnostic workup include?

Have you considered getting a 2nd opinion on your son's diagnosis and treatment plan?

Dutch...let me know how the LDN discussion goes...I have asked in the past but our doc doesn't like the lack of studies.
If you DO decide to go with Remi we <3 the infusion center at Upstate...they were beyond wonderful for the most part!!

Ang, We had the discussion briefly when we first discussed the possibility of 6mp failing.....we're not quite there yet because 6mp is still promising.....but the discussion was basically the same outcome as yours...he is not interested in trying LDN....says he personally would not prescribe it due to lack of study at a significant IBD university. He did agree to read our collection of info.....he told me he read through it...but we haven't discussed his opinion yet....I'm sure not much has changed.
Patricia,
Yes we are seeing a pediatric IBD gastroenterologist. We're pleased with him and we are at a university care center although not in a major city...the growth issue is because he was Ill for almost a year, maybe longer and undiagnosed (typical of an IBD onset). And during that time he was extremely picky and not eating properly while still very active.....his colon was 100% affected and was a war zone once we got to the bottom of things. He was also vomiting regularly.
His diagnosis is based on his clinical symptoms, the colonoscopy,endoscopy...the biopsy, and most recently Prometheus testing.....all showing UC and no indication of Crohns. We are told we may soon have an MRI? To look at his small intestine just to confirm no damage there.
In addition it is our understanding that UC or Crohns we would be treating the same way at this point anyhow.
But he did, in fact, lose a lot of nutrition for almost a year during what was likely the beginning of puberty. His growth was minimal during that time for whatever reason.
We have considered going to Boston, not for a 2nd opinion, so to speak..but just to,put a 2nd set of eyes on to be sure we don't have other feasible alternatives......

David......had the vit d and b12 checked. Vit d still rising at 42 now...up from 32 a few months ago,..b12.....grr. Not only is it not deficient...it's the opposite! 1900.....more than twice the normal high?? Wondering if we should stop supplementing? Any thoughts on this? Quick research says could be sign of liver disease? Maybe due to the 6mp induced hepatitis??

How much B12 have you been supplementing and how often? Skimming over the thread I don't see a test result for it?

I think it's 500 mg once a day.....but I'm assuming that since his level is 1900 in his blood and it should be 800 at its best that we should discontinue supplementAtion.....my bigger concern is if this indicates actual liver damage or if this is yet another result of the 6mp and will normalize now that the 6mp is stopped

Did you test for B12 prior to starting supplementation? If so, what was the level?

What did your doctor say when those results came back?

"Prometheus tests suggest only UC and not Crohns......sigh of relief..."


Why the sigh of relief Dutch? Neither one is much fun....

I just recently had some funky numbers on a liver test. So, now trying to do more tests to see if my meds are causing the low reading, and also test for Wilson's disease. Doubt it's Wilson's, since that't genetic and nobody in my family can remember anyone with it or any other kind of liver problem. Plus my doctor has only seen one case of it. Just another day in the life of Crohn's I guess. Can't wait for the lab tests to stop being weird.

Hobbes

@hobbes..
I know what youre saying about the labs....it's very stressful to try and enjoy my sons remission when we have to constantly worry about strange labs.
In regards to the sigh of relief..I agree..neither Crohns or UC is any fun. But if you had to pick one..UC would be the one to pick only because the scope of damage is limited and the end game can include removing the colon...unlike Crohns where organs affected cannot be removed. UC is bad..but Crohns is definitely worse....

As I mentioned in one of my other posts, my son just started on Remicade. He had his second infusion last week. He's not better yet and we are waiting for the miracle to happen. During the second infusion, the nurse said she needs to do the regular blood work. This morning I get a call from the doctor saying "my son's liver enzymes are slightly elevated". He wants to meet my son next week to check the levels again.

His liver enzymes were normal in Jan'15 and Jun'15. I'm so concerned now. This disease is so tough. I'm still trying to understand what's happening.

1. Can the Remicade elevate the liver enzymes?
2. He was given Tylenol and Benedry before blood test. Did any of the medications cause it? I know it's highly unlikely, because he took the medicine about 10 mins prior to the blood test.

Did you or any of your kids experience this? Is it a cause of concern?
My son was never on Imuran, 6MP.

My son is diagnosed with moderate to severe Crohn's Colitis in April 2015. He had 6 months of symptoms prior. Waiting for his remission.
Past Medications:
Prednisone (30mg, tapered). He failed Prednisone :mad2:
Current medications: Remicade (2 infusions done, 5ml/kg : No major breakthrough yet), Pentasa 500mg 2x a day, Prilosec 20mg, Vitamin D and Iron supplements