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Dutch941

Dutch941

Joined
Jan 18, 2012
Messages
219
Location
Syracuse,NY
Ok...so I thought things were going well for us and then the doc called today with info from recent labs.....
He says liver enzymes are stable...still a little bit elevated but better since reducing the 6 mp from 50 mg to 37.5.....Hgb good......but iron and ferritin still low..improving slowly which he expected....he is concerned that his SED rate remains high. At 18...wants to see it under 15...then he blasted me with mention of remicade!! We're not ready for that. We weren't ready for 6 mp.
He's waiting on results of stool test for lactoferrin and calprotectin....he says if it's elevated he wants to re scope and look for microscopic swelling in the intestine......what I got from our conversation was this.....if stool samples are good....we stay the course.....if not...we re scope and likely switch to remicade.....I think this is a good time to start discussing LDN.
He raised the pentasa from 1000 mg to 2000....I'm assuming in hopes of lowering the SED rate??
Urgh. I know people have it much worse than us..... BuT god this is so frustrating and scary. Remicade is end of the line stuff from what I can gather ....didn't want to have to pull out the big guns so soon.....he's only 12 for gods sake...
Thanks for listening. I welcome any advice...thoughts..or suggestion s......
 
Ok.....so After researching Matt's labs I notice his ESR rate was high at onset at 35...then dropped right down to 5 upon introduction of steroids......as we weaned off steroids and onto 6 mp it started to climb again up to a high of 23....ths doesn't surprise me because I was told 6 mp takes awhile to start working. All of the sudden on. Arch 1st it begins to drop.....for the last 2 months it has steadily dropped to its current level of 18......only 3 away from normal range......so why would my doctor be concerned and want to possibly alter medications??????? I will certainly ask him....but does anyone have any knowledge of what I Might be missing here?
 
Hey Don,

How long has Matt been on the 6MP? I am reading right and guessing that it wasn't from the moment of diagnosis? If so then he still hasn't reached the maximum time frame in which it takes to work.
Then there is the reduction in dose. Has he had bloods to determine if he is receiving a therapeutic dose? If not this may be a contributing factor to his Sed rate but having said that it is continuing to drop.

I would think the doc is looking for a faster response time. I tend to agree with his idea of scoping if his faecal inflammation levels are raised.
Do they also test his CRP? I would have thought that was a preferable blood marker of inflammation over ESR as it has faster response times so is generally a better indicator of response to treatment.

Sorry lots more questions than answers! :eek2:

Dusty. xxx
 
Diagnosis was December....steroids first then 6 mp started about 1 month later..we raised him to 50 mg 2 weeks later which spiked his liver enzymes....these came down when we lowered dose to 50 one day then 25 the next. It is his belief that raising 6mp is not an option due to last reaction....
What tests do they do to determine therapeutic levels? I recall reading about that before but I don't think we've done that....
We have done crp and I believe that has been low..I recall him saying he didn't like crp as an indicator for some reason.
For me..it seems odd to want to change anything with the SED rate moving towards the normal range.....I feel like he sees something else he hasn't mentioned yet.....I assumed the fecal samples were being done as a confirming measure of remission...and then to find out he Did them cause he suspected things were going south was like a kick in the balls......so out of left field my mind is spinning.
 
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Okay...I can understand not wanting to increase his 6MP based on his liver enzymes. There is also the option of adding Allopurinol that you may like to discuss. Allopurinol inhibits the breakdown of Thiopurine, so adding this drug reduces the amount of 6MP you need to 1/2 or a 1/4 of the original dose. It doesn't always work but might be worth a try.

The blood test is PROMETHEUS® Thiopurine Metabolites ...
is a test to monitor thiopurine medications. Because everyone metabolizes medications differently, your doctor may order this test to make sure your level of treatment is within a range that may help control symptoms.
Click to expand...
I hear you about this coming out of left field. :( If it were me I would scope if the faecal inflammatory markers were high and then reassess things based on what was seen. If they are normal then I would likely stick with the status quo.

Dusty. xxx
 
Thanks again dusty.....
One last question....even if there's some inflammation.....dont u think that's ok given it has only been 5 months? At diagnosis his colon was described as a war zone.....completely inflamed with ulcers throughout..so it would seem to me that some Inflammation could still be present without it meaning the 6mp is failing..... Or do you think 5 months should have been enough time?
 
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Taking into account that healing takes time, his disease must have been severe and his treatment regime then I would think that it isn't unreasonable to think that there may be some last remnants of inflammation there that the 6MP may now take care of since he is heading to the 6 month mark. While ever his bloods are reflecting that and if his faecal inflammation markers point to that then I think your reasoning is very sound.

The reason I gave the "taking into accounts" is that the biologics, particularly Remicade, often result in very rapid healing.

Hopefully the Faecal results will be available to you soon! Nothing worse than waiting, ugh!

Dusty. xxx
 
I would agree that you are heading in the right direction...perhaps just not fast enough for your doc? Remi can be a scary thought...but when it works it can be wonderful. I would share your fears with your doc (I, too, wanted to "save" Remicaid for when she was "sicker"; it didn't end up working for us anyway).
Hoping for better results and a bit of time to let the inflammation markers continue to drop. :) Hang in there!!
 
At izzy...I know ...that's my fear....kind of wanted to know we have a back up option.. If we use it..and it fails...I lose that feeling of a safety net......grrrr.
 
I know how you feel when docs just throw these scary words out there! I wasn't ready for the Aza either (he did mention maybe needing something stronger - I freaked). If he is going to do the feacal calprotectin then I think that takes a few weeks to get the results (it does here anyway). That would give the 6mp a little while longer to help before you have to make a final decision. It also stressed me that my son is only just 13 - if they use these drugs now, what will he be able to use when he is older.
I tried to ask about LDN - the GI guy had heard of it but said the ones he had heard of it hadn't helped.
These decisions are so hard, but as his paediatrician said - we can only do the best we can with the information and medicines we have at the moment and hopefully our kids will be lucky enough to see a cure found in their lifetime!
 
I don't know, the top-down approach is wise for kids, especially nearing puberty. And wanting a quick response time is justified. We not only wasted time with 6mp - it helped, but didn't push my son over the edge - being not fully protected led to a new fistula complication. That meant 5 days in the hospital, MRI, PICC line and 8 weeks of IV antibiotics. SO not worth it, but that's hindsight for us. My son was 9 then. Remicade was awesome, he was literally instantly better (ok, a couple of days...). There are options after Remicade too, it's not end of the line. Mostly just my 2 cents and experience and you need to be comfortable with the choices for your family of course.
 
Dutch, The allopurinol /6mp combo worked for johnny when he was having issues with his liver enzymes. Maybe that is an option. I have heard it can takes 6 months to work, would they try a short course of Pred to get those sed rates back down and continue the 6mp? I understand the hesitantcy with Remi. We had dinner a few weeks ago with some friends, he is a Dr and his wife had crohns. He is very into research for the disease. He told us he fully believes we will see our son cured of this disease in his lifetime. When he started practicing medicine a heart transplant was inconceivable. Our local hospital has done 12 heart transplants this year. So hang in there. I know it so hard not to worry. :)
 
Thanks ........we plan on discussing staying the course....allopurinol...and LDN before we go down the remicade path.....depending of course on what information the dr gives and how he explains his stance.........
 
Ok....update time....things looking better! Liver enzymes returning to normal....alt is normal...ast is still a teeny bit elevated... Sed rate is now 10! And crp normal also....all this after dr raised the pentasa to 2500 mg per day. So ..for now....dr doesn't see a need to re scope or consider medicine change. Yay! Also....discussed Allupurinol....dr says it is risky to try in peds and has a purpose at times but too risky for us and our needs......also no need for Prometheus test.....says it is useful tool sometimes, but in our circumstances our labs tell the story and he says it is not necessary since we can tell the 6 mp is working....just was bothering the liver some...he doesn't believe that test will reveal anything.....we also dropped the LDN bomb..he wasn't optimistic but was receptive to looking into it...we to.d him LDN is or plan if 6mp fails us....
 
:yoshijumpjoy::yoshijumpjoy:Awesome news:yoshijumpjoy::yoshijumpjoy: Your patience paid off.

LOL "we told him LDN was our plan...." You go! :thumleft:
 
So happy for you Dutch!!! But of course I am wondering what your Dr. said about 6mp and allopurinol. Our Dr. never discussed any issues with us. I appreciate anything you are willing to share. Thanks so much. :). Tiffany
 
Tiffany...I wish I could recall exactly...next time we speak I'll ask him again..it's so hard to recall everything when you're asking 20 plus questions!
What I remember is he said it is often used for adults but he believes it too risky for peds because of a strong likelihood of cAusing some other issue....maybe hypo or hyper something or other?? I seem to recall something related to bone marrow??
Also he said in our case it would ikely help alleviate liver issues but would not be effective in reachingg therapeutic dosage ...not sure why exactly...
Again I'll ask again..but it may be awhile as his on vacation and our next appt is 2 months out
 
Dutch, I bet it is the risk of leukopenia (lowered white blood cell count) which can be irreversible. Johnny had that but the Dr. lowered the dose. It took 3 months but it went back to normal and has been normal for 2 months. We will be moving to Cincinnati next month and have an appointment with a new G.I. the first week of August so I will ask then. I appreciate you being willing to ask your G.I.. I know what you mean about not absorbing all the information. I always go home trying to remeber exactly what they told me. Thnks for responding and I am so happy everything is going so well. It's amazing how much we have learned in a few short months! Tiffany
 
I know....I wish I was younger...I would go back to school to become a doctor. I am some of the knowledge rubs off on My son and he chooses to pursue medicine..then he can prescribe his own LDN!
When we go to dr..we bring a bullet list of questions and concerns.....we go through each item line by line and I TRY to write his answers down..but I feel rushed because I don't want to tie him up forever....so I paraphrase and jot notes....then I get home and I know the jist of what he said..but I often forget the specifics..
Anyways....leukopenia does sound right.....
 
Thanks for the fab update Don! I so hope all continues to stay settled for your boy...:hug:

Onwards and Upwards!
Dusty. xxx
 
love to hear the good news :)
i know what you mean about going back to school...are you sure we are too old??? i have lamented often that i wasn'tmore driven when i was younger :(
 
Dutch- I would avoid the 6MP/allopurinol as well unless it's a have to. It was a bad experience for us.

SO GLAD to hear things are looking up!

J.
 
Glad things are moving in the right direction.
WE did 6-mp/allopurinol but it was short lived and have now moved on to MTX.
 

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