Imuran not working

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Needacuresitko

Needacuresitko

Joined
Jan 17, 2013
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6
Anyone have issues with Imuran levels not being where they should? My sons levels are lower than they should be. Dr keeps increasing dose. We are at highest dose now, 125mg a day. He is 10 years old. His levels came back at 116 and should be at 240. He's also on prednisone, 10mg daily. He has a lot of pain and cramping but stools are normal. Anyone have an idea why levels would be so low? Do some people just not respond to meds like others or is it the disease process that keeps it from working. I should mention he will begin the 125 mg today. Was previously on 75mg for 6 mo, 100 for the past 2 mo and now increasing to 125mgs. Been on the prednisone for 4 wks.
 
We had the same issue. Jack metabolized the Imuran too quickly or well and could not reach theraputic levels with it and they had him up to the same dose 125/day. His GI backed him all the way down and added allipurinol, not exactly sure how it works someone much more knowledgeable then I will be along and correct me. But the way I understand it is the allipurinol makes the Imuran more potent and metabolize less quickly allowing him to reach the theraputic levels he ended up on 75mg of Imuran along with 100mg of Allipurinol which got him to theraputic levels on the Imuran and soon had him feeling better with less pain and cramping.
Are they doing labs every 2 weeks?
 
Thank you so much for your reply. It is great to hear some promising news. They are doing labs every 3 weeks. Everything checks out great except for the Imuran levels. He has a lot of cramping and pain. Also a lot of joint pain but no swelling. If anything, he has gotten worse over the corse of the past 3 months. He had a flair just before Christmas and was put on Prednisone. Stools became normal with no blood so he has been on the taper down. Due to Imuran results we were told to stay on 10 mg of the prednisone until the next set of labs are drawn. I really hate all of the meds, the side effects, and most of all the pain my son experiences daily. Praying every day for a cure...I am glad your son is having some sucess!
 
ds used allopurinol as well- but his was because it kept going to his liver.
we never did get back up to a good level without liver issues- good luck
 
If you don't mind me asking when was he diagnosed? When did he start on Imuran? It can take a little while for the Imuran to start working. Jack was dx'd at 10 and it was probably a year before we got all the meds worked out and he was feeling good. Once you can reach remission joint pain should lesson as well, have you seen a rhuemy, I know a lot of kids see one in addition to the GI, we don't but only seem to have joint pain sporadically now when he s flaring, but was a regular occurance.
Have you tried EN? a lot of parents on here swear by it and it is very common as a first line in other countries besides the US, not sure why that is so but studies show it to be as effective as prednisone without all the nasty side effects.
I hear you about all the "scary" side effects of the meds but the risk is really very small and the damage done by non or under treated crohn's is much higher and can cause so many awful complications.
It is so hard to see them in such pain but you are doing the right thing and getting the disease under control so you can have your happy healthy son back. I'll tag some of the other mothers who can give you more information - tagging :ybiggrin:, DustyKat, crohnsinct, tesscorm, patricia56
 
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My son, Jason was dx with colitis 9/2010 and then crohns 4/2012. He's been on Imuran since April 2012. We do not see a rhuemy but it was suggested if it continues. He does not have any joint swelling and pain is sporadic and not bilateral so it is assumed a side effect from zimuran. His sed rate is also normal as well.
Thank you for the reminder about how the meds are a better choice than allowing the disease take over. Sometimes I forget to think about that when we struggle with the meds.
What is EN? Is it that steroid that is only obsorbed into intestines?
Thank you for tagging other moms! I am so glad I found this forum today and thankful for your response!
 
Hi and welcome.
No real advice. I'm sure the other's will here soon.
I hope you son gets better soon.
Hugs to both of you.
 
So no steriods, basically giving the guts a rest and making sure they get all the nutrition their growing bodies need.
We have experienced the same joint pains, no swelling but he has had to wear ankle braces or have his ankles wrapped because they hurt but that has lessened a considerable amount since he has been feeling better
 
Thank you! I will read up on EN and yes, entocort is the steroid. We took it before when first diagnosed. Not sure why were not on that again. I completely forgot about it.
 
Welcome to the forum -

It sounds like things are difficult, I'm sorry your son is suffering like that. I hope we are able to offer you some help and support.

We can talk in detail about the treatments your son is getting and what other options there are but the first thing I feel you should seriously consider is to take your son to Cleveland Clinic Pediatric IBD Center for a 2nd opinion. I really think you need a 2nd opinion and you need it sooner rather than later.

Given the length of time he's been in treatment and your son's poor response to the Imuran I would have expected that a different approach would have been at least considered or proposed by now. Switching to the Imuran/Allopurinol combo is the most obvious one.

Typically it takes about 4 months for imuran to be effective. Did your son's doctor test your son for TPMT activity level? This test helps identify how much your body metabolizes the medication in Imuran. It sounds like your son is a low metabolizer. The problem with this is that increasing the dose to get to therapeutic dosing may also cause liver toxicity. So knowing this information in advance can be helpful. Not all doctors do this test and not all insurance companies will cover it.

I am guessing that the reason your son's doctor went to prednisone instead of entocort is because of the systemic symptoms (sx) your son is showing. Typically prednisone will suppress a lot of body pains/discomfort and make you feel great for a while. Entocort is less likely to do that.

His SED rate may be normal because of the prednisone.

Joint pain in Crohn's can either be RA-type which would mean swelling, redness, heat - or it can be Crohn's-related pain. The later can be very painful but rarely involves any localized signs of inflammation. It tends to come and go for no apparent reason although it often seems to be worse during or just before flares. It doesn't cause permanent damage and doesn't show up on xrays or imaging. Here's a link to more information at the CCFA website

http://www.ccfa.org/resources/arthritis.html
 
Part II :)

What treatment was he on before the Crohn's diagnosis? Was it ever effective?

I agree with the suggestion that you consider starting your son on enteral nutrition - basically liquid formula. You can use Boost or Ensure or your doctor can arrange for prescription formulas. But it is best done with nothing by mouth except formula and water at first. Symptoms usually start to improve within 2 weeks if it's a treatment that works for your child. It is the first treatment used to treat children in Canada, UK, Europe and Japan.

If your son has had imaging, scopes and labs done and you would like to share them here we can discuss the results and how they impact treatment choices and prognosis.

I hope that your son is holding his own right now and that you are able to find the right doctor and right treatment plan soon.
 
Hi

My daughter is moving up to 125 mg aza tomorrow, her level is sitting at 180 just got the results today. She has been on aza for 12 months.
 
Hi, no real advice about the Imuran, we are going to be starting it soon, if the nurse ever calls. My son did the 8 weeks exclusive EN through an NG tube and certainly helped with all his tummy pains. We have never used Pred since the EN worked really well. Hope things improve soon!
 
Hi and :welcome:

I'm so sorry to hear about your boy and all he is going through...:hug:

I will also add my support to giving EN a go. It is certainly worth a try and if nothing else the nutritional aspect of things can only be beneficial.

The addition of Allopurinol may be of benefit in reaching therapeutic levels for your boy. Has the doctor mentioned this at all?
Allopurinol works by interfering with the metabolism (degradation) of Azathioprine (Imuran). It causes it to stay in the body longer, so if you take Allopurinol with a normal dose of Imuran it causes toxicity. To avoid this you need to drop the Imuran dose to a 1/4 of what you are taking...100mg becomes 25mg...add the Allopurinol and the sustained levels of thiopurine in the blood are equal to to that of 100mg of Imuran.
Out of curiosity, is he taking the brand Imuran or a generic?

Joint pain - this is an EIM (Extra Intestinal Manifestation) of Crohn's. The pain that affects the large joints of the body is directly related to what is happening in the bowel. If this is where his is located then it will resolve when remission is achieved. I think it would be work being checked out by a rheumatologist regardless and even more so if he has pain in the smaller joints, spinal/back pain etc.

It is difficult to say why meds work for some and not for others. My son was diagnosed very quickly and commenced on meds immediately. His Crohn's was rated as mild to very mild and yet he quickly developed complication after complication. In his case I think it had more to with the type of disease he had and its location. He has fistulising ileal disease and it only took two deep ulcers, surrounded by very mild inflammation, to create havoc. The meds certainly didn't heal his disease but since there was no additional spread of disease or worsening once the complications were recognised and additional treatment added I have assumed that they at least stabilised him.

Good luck and welcome aboard!

Dusty. xxx
 
Wow. My opinion - GET HIM OFF OF IMURAN! With the risks people take with treatments like Imuran, Remicade, Humira, 6mp.... I mean to not see an improvement or any positive changes in his health, would tell me to take him off of the drug. My view and all that I've been through with the decisions I've had to make, I always educate myself as much as possible and listen to my intuition and gut feeling. All things happen for a reason is the way I look at the way things played out in my life. I tried 6 mp and ended up being allergic, well for me that wasn't a drug I was supposed to be on.

Also, take his age into consideration. He is a growing boy and his immune system is prob pretty strong, but he is still young to be pumped full of harsh drugs that are making his levels in his body off. The reason they require testing of levels is to make sure the body is responded well to the treatment. I don't understand why the doctor is not taking that into consideration.

You may also want to look into the GAPS diet. It will promote healing in his intestines and it will be very mild on his body. Diet does matter.

Also, you should look into LDN. It's safe, cheap and effective. It worked well for one of the members of this forums daughter and this was over a year ago and she is still well I think. I'll write back and let you know what her name is and maybe she can answer questions if you are even interested in this drug. My blog has a lot of LDN info posted as well. There's a lot of literature out there on it and if I were you I'd really explore safer options. (LDN stands for low dose naltrexone.

Hang in there and I hope he starts to feel better soon!! Feel free to write if you have questions.:smile:





Needacuresitko said:
Anyone have issues with Imuran levels not being where they should? My sons levels are lower than they should be. Dr keeps increasing dose. We are at highest dose now, 125mg a day. He is 10 years old. His levels came back at 116 and should be at 240. He's also on prednisone, 10mg daily. He has a lot of pain and cramping but stools are normal. Anyone have an idea why levels would be so low? Do some people just not respond to meds like others or is it the disease process that keeps it from working. I should mention he will begin the 125 mg today. Was previously on 75mg for 6 mo, 100 for the past 2 mo and now increasing to 125mgs. Been on the prednisone for 4 wks.
Click to expand...
 
Wow...thanks everyone! So much helpful info!
I posted that my son was dx 9/10 in error. He was dx with colitis 9/11 and crohns 4/12. Crohns is in the illium. We do see a Dr at the Cleve Clinic.
When Jason was dx with colitis he was tx with Pentsa 1000mg 2x a day. And Prednidone for 2 mo when first dx. He did well until about Feb 2012. Pain and cramping was the issue. Dr did MRE which showed a lot og inflamation. A scope was followed and dx of crohns was given 4/12. We started on Imuran 75 mg, entacort, and stayed on Pentasa. In july Imuran levels had not yet peaked but dr was not overall concerned bc he was doing well and levels were not to far off. He did well until sept 2012 and pain returned. Imuran levels were still on the lower side so it was increased to 100mg in Oct. He was also taken off of Pentasa in Sept due to side effects ie, lightheaded, low bp, palpatations, bradycardia. In Dec he had a flair and was put on Prednisone, which he is still on and the Imuran was increased to 125 mg bc levels were extremely low, at 136... Should be 140. Another blood test is scheduled end of this month. If level does not increase I believe another MRE will be done to check progression of disease.
As for the dr, we do feel confident with him. He calls us personally and gives us a lot of resources. I guess there is a fine line between giving meds time to work and the potential for the disease to progress in the meantime. Not to mention watching your child cry out when the cramping is severe.
I am interested in all of the things you have all suggested, EN, LDN and the allopurinol with imuran. I will mention all of this to the dr once the Imuran levels come back. Not tyring to be pessimistic but I'm thinking there will not be much improvement.
Question about the EN...do your children attend school? How does lunch time go for them? My son is very private and does not want his classmates to know about his condition. He has been questioned in the past about excessive bathroom use and missed school days and he has told them he has stomach allergies. I guess if he were drinking his lunch he could tell them that story. Ugh...
One more thing to add...my 12 year old daughter has been symptomatic since 9/12 and is going in for scope 2/5/13. I can't believe this could be happening to both. It's hard enough to keep things straight!
I appreciate everyone's support here! Peace and healing to all of you and your sweet children!
 
You poor thing you are going through the ringer, both Dusty's children have Crohn's. We are a 2 Crohn's household with my hubby and son. Somebody else brought up LDN and that is what my son has been on for the last nearly 7 months and we are seeing good results


HD
 
We did EEN with DS while he was in school.
We bought him stainless steel water bottles to put his formula in.
He drank 7 peptamen jr a day.
2 for breakfast lunch and dinner plus one before bed.
DS has LTFA to tree nuts so the kids were used to him always bringing his own food.
It did help some for him.
He now drinks 2-3 a day to help with nutrition and growth plus inflammation .
 
Oh my, I'm so sorry to hear about your daughter. What a very worrying time for you...:hug:

I hope all goes well with your boy's next appointment and with your daughter's scope!

Good luck!

Dusty. xxx
 

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