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Imuran/Azathioprine/6-MP Support Group

I suspect it was your CBC. Certain levels are therapeutic but above that are not safe to continue with.
 
Very very frustrated with the laboratory ladies.. they "decided" I didn't need the me-MP and 6-TGN tests last week, and forgot to inform me..
I came on purpose last week to get the results before my holiday abroad.. so that I could communicate with the GI before my holiday and get new medication or change medication if necessary....
They tell me to controll my illness, and then not communicate.... PFFFFFFFFFFFF very frustrated..
 
Congrats and Good luck! My son is on 75mg/day and is on day 6 with no side effects so far :). They told him to take with food-hope that's OK.
 
I have read that it should be taken 2 hrs. after eating or 1 hr. before eating. All my GI said was to avoid dairy an hr. before and after. I also read that some people take it at bedtime to avoid nausea. My son started 3 weeks ago. He's on 37.5 mg and takes it at bedtime. No side effects as far as I can tell
 

Lady Organic

Moderator
Staff member
Congrats and Good luck! My son is on 75mg/day and is on day 6 with no side effects so far :). They told him to take with food-hope that's OK.
Imuran or purinethol? I dont remember about Imuran, but Purinethol must be taken on a empty stomach and wait 45 minutes after before eating anything.

I took both Imuran and purinethol, never had any side effect with purinethol and only mild nausea that subsided within weeks with Imuran.
 

Lady Organic

Moderator
Staff member
Ronroush: I would think that it would be bad if it's building up. I'm hoping that all my symptoms are not that. Do you know what kind of test it was that they did to determine that it was building up in your system?

Its a blood test that measures '' Nucleotides of 6-Thioguanine''. Not all hospital do it and mine had to be sent to another hospital for analysis. I think its a fairly new test as i have never had that 10 years ago, but did 2 years ago. There is a range to respect and when we exceed the limit, it means the drug is building up in our body and we must decrease the medication. This happened to me while on purinethol. Im not sure of the potential side effect of that but its a toxicologic issue (maybe for the liver?). But I was not feeling any side effect at all, still I was ordered to decrease my medication.

leucopenia, low white blood count is also to be tested while on these drugs. This happened to me as well.
 
Location
USA
Hi everyone! On long-term 6MP here - have had some trouble with elevated liver levels, but they've evened out. Have to go in for my 6mth CBC and Liver Function Panel soon. Hoping everything's still stable!
 
Location
USA
Hi Book Diva! I hope 6MP can get your son into remission! I was first put on it as a young teen, because my mom was super-proactive in researching treatments and asked my GI to try it. 6MP is what finally ended my horrible cycle of pred/hospitalization - hoping for great results for your son, too!
 
Been taking Aza 100mg a day since May, no side effects at all and all my blood tests have come back normal :) Still having a few symptoms and some pain (but not as much as before) which I will mention to my consultant at my appointment in a few weeks
 
Its a blood test that measures '' Nucleotides of 6-Thioguanine''. Not all hospital do it and mine had to be sent to another hospital for analysis. I think its a fairly new test as i have never had that 10 years ago, but did 2 years ago. There is a range to respect and when we exceed the limit, it means the drug is building up in our body and we must decrease the medication. This happened to me while on purinethol. Im not sure of the potential side effect of that but its a toxicologic issue (maybe for the liver?). But I was not feeling any side effect at all, still I was ordered to decrease my medication.

leucopenia, low white blood count is also to be tested while on these drugs. This happened to me as well.
Thanks LadyO, good to know.
I had a test called Thimon. Apparently developed at the University where I am now seeing an IBD specialist. (Had to drive an hour to go get more blood done there because the test is only available there) I googled it and came up with nothing. Though it sounds much like the one you are mentioning here. They found my liver enzymes to be high, as well as some other issues with low blood counts. (WBC, RBC, neutrophils, hemoglobin). They have since reduced my imuran to 125mg and retesting in two weeks. Hoping these side effects are reduced with this adjustment.
 
So, I have been on Aza for about 6 weeks now. Within the first 5 days I developed my first ocular migraine. I have had two more since then, along with many regular headaches. For several weeks I had goosebumps over both arms, no itching or burning, just weird. That went away but I have joint pain in both elbows, which I have never had before. My hair was falling out for about 3 weeks, not in clumps just enough to make a noticeable difference. That has stopped. If the headaches and joint pain would stop, and it would make any difference in my belly pain, I would feel better about this drug. Any chance these effects will go away with time? I am only on 50mg.
 

theOcean

Moderator
That sounds pretty bad for only being on 50mg. Let your GI know you're experiencing all these symptoms -- maybe you can try 6mp, its sister drug instead. I don't get any side-effects on it like I did with Imuran.
 
That is bad for such a small dose I on 150mg a day as well as 40mg injection every two weeks and no major side affects I do get colds easy but I do worry about the effects long term
 

theOcean

Moderator
That is bad for such a small dose I on 150mg a day as well as 40mg injection every two weeks and no major side affects I do get colds easy but I do worry about the effects long term

I think I'm on the same combination treatment plan as you, except I take 100mg 6mp! I think as long as you get regular blood tests and report any oddities you should be fine being on both. It's better than having your IBD be active!
 
Oh I know it's better I still have some bad days but all in all I lot better now I was very bad that bad that I lost my girlfriend of 4 years over uc she could not cope with it and I felt sick and dirty all time and so so tired I don't blame her for not sticking round
 
But this new combo of drugs is working so I feel I can get my life back on track it was hard I went from my norm weight of 11 stone to just under 7 stone I was that bad could not eat at all but I back up to 10 stone thanks to my doctor and my meds
 
Im currently on 150mg a day of Imuran (also called AZA). Had special Prometheus blood test done to see if it is working and it is not :( starting combo therapy of Imuran and Remicade IV infusions on top of Prednisone taper now at 30mg a day (cant wait to be off Pred for sure!) and 4800mg a day of Asacol. So ready to get better :) prayers for better health for all
 
You might need your meds upped or changed round you should talk to your gp on this and see they should be able do something
 
I have an appointment with my GI doctor next Moday so I'm going to let him know then. Strange that i felt ok the first few months of taking it and its getting worse now!
 
I'm currently on 100mg of Azathioprine. Been on it for about 6 weeks, I had just tapered off of my pred and then had a blockage caused by inflammation/flare up again. So back on pred again for a while to see of the Azathioprine is more affective this time around. If not I might be starting on Inflixmab/Remicade.

Crossing my fingers that the Aza will have built up more in my system this time.
 
Yes, that's what I thought, theOcean. My tapering for the Pred this time is over 9 weeks and I'm also looking into possibly doing EEN to get down my inflammation. Fingers crossed. I'd rather not do infliximab yet and start running out of treatment options, although Entyvio is looking really promising as a Crohn's treatment.
 

Lady Organic

Moderator
Staff member
I have an appointment with my GI doctor next Moday so I'm going to let him know then. Strange that i felt ok the first few months of taking it and its getting worse now!
happened to me too at first. Going better then bad again, but we increased a bit the medication and then i reached full remission for several years.
 
Is Aza meant to help with abscesses? I've had a perianal abscess since December last year which seems to have pretty much disappeared in the last couple of weeks. Not sure if its just a coincidence but it was showing no signs of going anywhere till now lol. Either way glad its finally gone :)
 

Lady Organic

Moderator
Staff member
Is Aza meant to help with abscesses? I've had a perianal abscess since December last year which seems to have pretty much disappeared in the last couple of weeks. Not sure if its just a coincidence but it was showing no signs of going anywhere till now lol. Either way glad its finally gone :)
biologics have better efficacy regarding abesses and fistula if im correct.

How was your abscess diagnosed? was it seen in MRI?
 

Lady Organic

Moderator
Staff member
May I ask what symptoms you experiemented? and what it looked like?

I am asking because my GP thought I had a ''debuting-first stage'' peri-anal abscess 2 months ago, she prescribed antibiotics too. She made a digit rectal exam and was sure it was that and not hemmorhoids. I felt the antibiotcs helped a bit but not enterely. Then I had MRI and rectoscopy with no indication of abscess, but rather small hemmorhoids seen in rectoscopy... I didnt have the typical big lump on my bum, but mostly feeling of constant pressure in my rectum/anus, like something is stuck there... Im still tring to treat this problem right now. Hoping it wont remain chronic as current treatment is not convincing :(
 
I had a small 1-2mm lump which was quite hard and used to cause a throbbing pain especially after a bowel movement. I noticed that after finishing the antibiotics (Flucloxicillin) it felt softer? I didn't really have any other symptoms from it though. My doctors never seemed quite sure exactly what it was.

Saw my GI today. He wants to do another Faecal calprotectin test to see how much inflammation i have now. He also did another blood test to test how much Aza is in my system or something :/ Then depending on those two things he will look at if he can increase the dosage.
 

theOcean

Moderator
I have a fistula rather than an abscess, but my GI says biologics as well as Imuran and 6mp (but NOT methotrexate) are helpful for treating them, so I'd assume it would be effective for abscesses as well. Biologics would still be best though.
 
Yes I agree there, I was put on azathioprine beginning of March and I'm still waiting for any change. I have 3 setons keeping the fistulas open. I take 200mg daily azathioprine and I'm also taking 3200mg asacol. I'm looking forward to starting something new.
Good luck Kelly, keep us updated.x
 

hawkeye

Moderator
Staff member
Nope, only got up to 2.85mg/kg +/-ish (200 mg for my frame). Scaled back from 200 mg to 150 mg/day as the white cell count started to act up - leukopenia.
 
Bloodtest for Imuran came back "clean" before our holiday, now Humira is starting to play up with antibodies... I'd rather stop Imuran because it makes me feel lightly sick all the time, and loose extra hair..
But now Humira is in the danger zone...

Tummy is irregular, but no slime or blood, so should be happy with that... Imuran seems to be doing what it should!
 
Just wondering if the hair loss of imuran stops or if it continues. I have been on imuran since may and the past few months my hair is really getting thinner. I had really full hair to start but it is really thinning out. Does this slow down for most people? I was just diagnosed with crohns in March and was very sick at the time, lost about 40lbs but now am back starting to feel well again - never thought I would say that at the time- but back to work, still very cautious with my diet but d and pain seem to be controlled. I know the hair should not be bothersome as I feel so much better, but I am starting to feel self conscious as my hair really has taken quite a beating. Anyone have any advice or thoughts about this? Thanks in advance 😄
 
Well, we were only around here for a few short weeks. Even though I rang the alarm bells last week:ymad:it was finally noted that the Aza was giving her pancreatitis. Lots of needless suffering.

So, after a trip to emerg, 5 tries to get the IV in with an hour of screaming, she had a fluid flush and hopefully we're good. Have yet to do follow up labs.

SO....if you have vomiting and/or severe abdominal pain please just get checked out. I should have taken her sooner but was waiting for her doctor to make the call on the labs because I had called and they weren't concerned. Duh.

This is a rare side effect but should be looked for.
 
I am off Imuran now. I was tested and even though I was only taking one pill, there was too much of the medicine in my blood. Does that seem strange.

2
 

Lady Organic

Moderator
Staff member
I am off Imuran now. I was tested and even though I was only taking one pill, there was too much of the medicine in my blood. Does that seem strange.

2
I think in the recent years they have come with this new test to measure the amount found in our body. As I mentionned it before, in 2000,s I took 6-mp in high dosage without that monitoring. In 2012 when the test was available, results showed too high amount. I feel that with this new test, less people will be able to get aza and 6-mp as a long term treatment...

Ive been questionning myself regarding this new test, its validity and use and the impact it will have on IBD treatments. If more people are taking out of thiopurines, where will they go next? the answer is pretty easy...Biologics... Biologics is the new trend, there is a lot of pushing towards them... so im wondering if there is some bias with this thiopurine monitoring test we are not aware of... what is rational behind it? i'd like to understand. Do they know or suspect the accumulation of the medication is what causes an increase in cancer? whats the deal with this? what does an accumulation really do?

there is no such monitoring with methotrexate, which is in the same category of thiopurines...

Ive been repeated by doctors for years: ''Dont worry about thiopurines or methotrexate, people can take them for decades without any problems''
Why suddently, because of this test, we cant take them anymore?
 
Hello everyone , has anyone here been given a drugs rest from Aza? Firstly did symptoms return and if they did how long after stopping taking it ?

I was not told to taper , I just stopped 12 days ago and I had a bit of a weird episode today.
 

Lady Organic

Moderator
Staff member
In 2010 I decided to stop 6-mp which is cousin to aza. It took about 1 year for the disease to come back in my case. Was it the accumulation of medication in my body? I dont know.
 

hawkeye

Moderator
Staff member
Hello everyone , has anyone here been given a drugs rest from Aza? Firstly did symptoms return and if they did how long after stopping taking it ?

I was not told to taper , I just stopped 12 days ago and I had a bit of a weird episode today.
I have been off of medication (Imuran and Salofalk) since my surgery in February. No taper, was taking 150 mg of aza before the surgery and haven't taken any since.

I haven't noticed any symptoms, but have a scope booked for November, so I'll know better after that is there are actually any issues (feel good remission vs. endoscopic remission).
 
I was on azathioprine for both Crohn's and autoimmune hepatitis. Unfortunately my liver refuses to behave, so I was forced to stop the azathioprine, about a month and a half ago. Taking it out of my drug cocktail (Humira, prednisone and azathioprine) to (humira, prednsione and Myfortic), I've noticed a small change. Having never been on Azathioprine alone, I can't tell how much of an impact it truly had. Adding it into the mix with a biologic though, did help significantly. I also had very few side effects from stopping it, though I did switch to another immunosuppressant (Myfortic), so again, that my cloud my experience.
 
I was on Imuran, 200mg I believe for at least 7 or 8 years. Recently stopped taking it because the side effects were just too much for me. The constant itching if I was ever out in the sun drove me bonkers. I am seeing my specialist today about switching up the medications.
 
Hi all, this is my first post. So many of you have really helped me build up the courage to take 6mp. I took my first last night, doctors orders. I have put it off because I feel as though I am a pretty mild case. I was diagnosed in 2010 pretty sereve, swollen joints and iritis, 10+ BMS a day went on 60mg of pred and tapered off over 4 months. Then wen into remission with dipentum for maintenance for over 3 years. I was initially diagnosed with crohns but then rediagnosed in 2013 as mild UC now suffering from swollen ankles and iritis/uveitis again so doc has said seems like crohns again....gah! Anyway I'm worried about my eyes so I'm now on 6mp.When do ppl generally start seeing side effects if you had any? I'm also recently married and want to have children in the not to distant future. My doc said you can get pregnant on 6mp but most of the literature says you can't?
 
My teenage son began 6mp whleil on 40 mg of pred so it is hard to determine which med was causing which side effect. He felt the addition of 6mp caused fatigue for about 2 weeks. Very little nausea and no other side effects. He was running 5 miles a day for cross country and had to back off for a few weeks. After 6 weeks on it now, pred has been removed and he has no side effects. All blood levels are in normal range for the first time in a year!

Best of luck with the 6mp!!! Did they run the bloodwork to see how quickly you metabolize 6mp? I believe it is important so uou can start on the correct dose and minimize se.
 
Hey guys, I haven't been on crohns forum in a while. I have been taken off of remicade and put back on entocort. In and out of the hospital. I have also started a low dose AZA 50mg. My husband and I are trying to conceive. He is worried because of all the med info about not being pregnant on AZA. But doctors say other wise. Has anyone here had an experience being preggo on AZA? I have had three healthy pregnancies, but back then I was on no medications and did not know I had crohns till last year. Also, what side effects should I expect. All I see online is horrid side effects. Its gotten me pretty scared and not wanting to TTC till I'm fully taken off of AZA. Thanks
 
Sorry, I don't have any experience with 6-mp and pregnancy (if I have to start worrying about aza & pregnancy with my teenage daughter she is going to have some serious issues!) I hope someone can suggest something soon. My daughter has had no side effects from aza and she has been on it since May.
 

Catherine

Moderator
My daughter is 19. Her GI opinion is that been on aza during pregnancy to better than flaring Crohn's disease.
 
I'm on Azathioprine and have spoken with my IBD team about trying for a child when I'm in remission, they've said they would keep me on it (and possibly Remicade (Infliximab)), if I was pregnant because Azathioprine has been around for a long time and they feel any risks to the baby outweigh the risk to the baby if the mother is having a flare up (could lead to the baby not getting the nutrients they need, etc). But definitely discuss it with your IDB team or GI if you would like more information.
 
Thanks for your input everyone...I actually just took an EPT test and I got a very faint positive...I go to my GI tomorrow. Now Im nervous but I would rather be safe than sorry and take my meds.
 

Lady Organic

Moderator
Staff member
6mp and Aza are said to be ok by doctors during pregnancies. Do we have long cohort studies that fallow the kids and grand kids or fertility/infertility rates of kids coming from immuno-suppressed mothers? Im trying to remember but Im not sure...
Methotrexate is a definitive NO for pregnancy.

Ive never had any side effects (to my knowledge) from 6-mp.
 
Imuran question

my Gi want me to go back on remicade after being off it for 2 years, plus he put me on imuran. Does Remicade work the second time? ive not heard many good reviews about it. thanks for any advice.:sign0085::sign0085:
 
I was on 150 mg of Imuran 20years ago and it gave me severe (aplastic?) anaemia so we stopped it altogether and later restarted on 50mg. I think I was on it for about 2 years but never thought it did much. Noticed no difference when I did stop taking it.

I've recently re-started Aza at 50mg and now 100mg since a few weeks and I'm not sure I'm tolerating it well.
Every time I get up from a chair I need to sit down just as quickly and it takes a while to get my bearings back. I've had this before but always thought it was due to low blood pressure. I don't think I've got low blood pressure atm and I've now read that that can also be due to anaemia. I'm already on iron pills as my HB was 95 which has now gone up to 103. I get weekly bloods and my HCT, RCC, platelets, total white count, neutrophils, CRP and lymphocytes are also out of normal range so I guess it could be a range of things.......

Anyway my question is if being very wobbly every time I get up could be due to anaemia?
 
Layla,
I too am taking 100 mg AZA per day. I am dizzy most of the time and sometimes do not drive because of the light headed feeling.

Also I'm taking Humira injections weekly.

Could this be a side affect of the AZA?
 
Well, I have been taken off of AZA and put back on pentasa. My GI and OB/GYN is against taking it during pregnancy. Thanks everyone.
 
M West, I don't remember it as a side effect last time but that was 20 years ago so who knows.

I made it through my first day back at work today, will have fresh bloods taken tomorrow and I'm seeing my GI this Thursday so I'll ask him.

I'll let you know what he says.
 

DustyKat

Super Moderator
Re Aza and Pregnancy:

There have been, in recent years, significant changes in the risk assessment for use of the immunomodulatory drugs azathioprine and 6-mercaptopurine (6-MP). While it was believed only a few years ago that use of these drugs before a planned pregnancy or during the pregnancy itself was associated with a relatively high risk of side effects (miscarriage, premature birth, birth defects), current data and the increased use of azathioprine and 6-MP in other disorders (e.g. organ transplantation, rheumatoid arthritis) have shown that use of these drugs before or during pregnancy is not associated with an increased risk of complications during pregnancy or with birth defects in the child.

There have also been a number of case reports that suggest that patients with inflammatory bowel diseases do not experience an increased risk due to use of azathioprine or 6-MP. Naturally, there can be no 100% guarantee that a given drug will not adversely affect the course of pregnancy. A careful review of the literature also reveals case reports which show a slightly increased rate of pregnancy complications and miscarriages in association with the use of azathioprine or 6-MP. Upon closer examination, however, it becomes rapidly clear that, because of the small number of cases, no statistical con- clusions can be made; in addition, other factors, such as an increased disease activity, may be responsible for the negative effects in these patients. Thus, a consensus has formed in Europe and the United States that azathioprine and 6-MP can be used during pregnancy if medically neces- sary and, in fact, should be used if other measures fail to control inflammatory activity.

The decision on whether azathioprine should be stopped in women planning a pregnancy or whether conception should be planned during ongoing azathioprine therapy requires careful consideration of the advantages and disadvantages and comprehensive counseling of the parents. This decision requires a high degree of responsibility and should include a joint interview between the parents, the treating gynecologist and/or family physician, as well as a gastroenterologist with the corresponding experience. There is no indication for pregnancy termination in women who become pregnant while being treated with azathioprine or 6-MP.

Also controversial is the use of azathioprine or 6-MP by the male partner in couples planning a pregnancy. Here, too, extensive experience from transplantation medicine and in patients with rheumatic disorders and inflammatory bowel diseases who were treated with azathioprine or 6-MP prior to or during the period of conception does not reveal any increased risk for pregnancy complications or birth defects. As with women, however, there are also individual case reports in the scientific literature that suggest possible negative effects on pregnancy secondary to azathioprine or 6-MP. Here, too, data is based on a very small number of cases, which precludes statistical evaluation. European and

American pharmaceutical regulatory agencies do not currently recommend that males being treated with azathioprine or 6-MP should discontinue therapy prior to a planned conception. Patients desiring maximum safety, however, can be advised to discontinue azathioprine three months prior to a planned conception. In the intervening period, males will produce sperm whose genetic material is not damaged by azathioprine. Over the past
years, we have followed a large number of women and men who have been treated with azathioprine before and during conception and pregnancy. There have been no reported instances of birth defects or pregnancy complica- tions that could be associated with this therapy.
This quote is lifted from a very good booklet about IBD and Pregnancy. It is well worth a read:

The Informed Patient - IBD and Pregnancy

@Kendra - I have just come across this research article about restarting Remicade after a break:

Restarting infliximab for IBD after a drug holiday.

Dusty. xxx
 
Hello all! just started 6mp and will be starting remi within the month....

I am about 1 week into the 6mp and just feel overall 'queasy'... haven't had to puke, yet... but will this go away?

did anyone else start like this, but got used to it, or did it just stop?

curious to see what you all have been thru in regards to the nausea....

thanks....
 
me 2

:frown:i usually have to take Phenergan or Zofran, meds make me feel so sick n weak like the flu x 10..
Hello all! just started 6mp and will be starting remi within the month....

I am about 1 week into the 6mp and just feel overall 'queasy'... haven't had to puke, yet... but will this go away?

did anyone else start like this, but got used to it, or did it just stop?

curious to see what you all have been thru in regards to the nausea....

thanks....
 

Lady Organic

Moderator
Staff member
Hello all! just started 6mp and will be starting remi within the month....

I am about 1 week into the 6mp and just feel overall 'queasy'... haven't had to puke, yet... but will this go away?

did anyone else start like this, but got used to it, or did it just stop?

curious to see what you all have been thru in regards to the nausea....

thanks....
ive never had nausea with 6-mp, but now I remember that I did for the few first weeks on AZA. It disappaered then after.
 
If you take your aza at night you will sleep through the sick feelings, and don't forget to EAT before you take it. Aza on an empty stomach is not awesome.

I've been on 50mg Imuran for about a year now and I'm doing just fine, I never had any bad things come up in my blood tests so I guess from reading this thread I'm one of the lucky ones who has never had any significant side effects. The worst one I got was hair thinning but that's pretty much stopped now my dose has been dropped.

Just an observation but everyone seems to be scared of taking aza or 6MP - would you rather deal with a few side effects and be well or not take the drug and continue being ill? I don't understand this mindset of 'omg it does bad things to people, I'm not going to take it, I'd rather be ill.' Or at least, that's how it seems to me.

I noticed someone mentioned dizziness - I'm having that at the moment but am blaming my prescription of ranitadine which I'm taking for some really bad reflux and dizziness is a side effect of that. Never had any dizziness while just on Imuran. I have low blood pressure anyway so there's always a base level of feeling slightly wonky for me. Lots of sugar or salty foods and I feel okay, usually.

And yes, I drive even when I'm feeling crappy and dizzy! Obviously if you feel unsafe then don't, but generally I'll get in the car even if I'm feeling wonky as I find driving focuses me and makes the dizziness a bit better.

That's it. I'm out. Don't be scared of aza, it's your friend!
 
I thought I posted this yesterday but evidently not.
Anyway I don't have low blood pressure atm but my haemoglobin has gone down again so I'm getting an iron infusion next week as the iron pills are not getting absorbed. Hopefully that will do the trick and allow me to stay on Aza for a while longer so we can see if it will help me attain and remain in remission.

As to nausea, no I've never noticed any side effects from Aza at all, other than the anaemia.
 

Lady Organic

Moderator
Staff member
I understand what you mean MissCadenza. i have a slight different view. Its funny, recently my rhuemy did mention methotrexate was the best friend in rheumatology, and I replied ''well, for me, its not quite a friend, its a business partner...!'' she laughed.
 
Interesting you should mention arthritis Lady Organic, as methotrexate would be the next step if the aza fails.
My arthritis is pretty bad atm and pred and aza are not doing anything for that. Are you saying methotrexate does a good job on arthritis too?
 
Just a quick update; My GI does think the aza was causing the anaemia. I appear to be extra sensitive to it even though I was only on 100 mg some marker TGE (?) was way higher than expected.
I've now stopped altogether and am to restart on 50mg after a week.
 
Sorry to change the subject.
My 15 year old started taking imuran along with her pentasa and antibiotics a few days ago and the fatigue and nausea have already started...how long do these side effects last?

Sorry to hear this. I was told three to six months. If it's bad keep your IBD nurse/consultant posted. I suffered a month of horrendous nausea and exhaustion and finally contacted them - they tested anticipating an increase from my 100mg dose but surprisingly they lowered by dose to 75mg. I dropped it to 50mg for a week through my own choice and upped it to 75mg on alternate days for a further week. Now on 75mg a day and slowly feeling the benefits.
 

Lady Organic

Moderator
Staff member
Interesting you should mention arthritis Lady Organic, as methotrexate would be the next step if the aza fails.
My arthritis is pretty bad atm and pred and aza are not doing anything for that. Are you saying methotrexate does a good job on arthritis too?
Hi Layla. I was on purinethol and then changed to methotrexate by my first rhuemy because arthritis was finally diagnosed after 8 months. Unfortunately, methotrexate didnt seem to help for my arthritis. I wish I had simply started sulphasalazine on top of my purinthol instead of changing althogher immuno-suppressant, especially since my case was mild. In the spring we decided to try sulpha (on top of methotrexate), but I chose to discontinue treatment after a month, due to possible side effects. If your IBD becomes well controlled with AZA, sulpha can be added to the mix. Sulpha is widely prescribed for many cases of arthritis.. How your arthritis has been diagnosed? Do you have swelling?
 
Thanks for replying Lady Organic.
My arthritis was diagnosed around 2 years ago as Osteo Arthritis, but bearing in mind I was supposed to have UC then rather than Crohn's this may not be the correct diagnosis.

No swelling, just pain and redness in my big toe joint(s). If I have a high dose of Hydrocortisone IV the arthritis disappears completely for a few days and then when I'm back on pred, even at doses of 60mg, the pain comes right back, mostly worse than it was.

It's better in warm weather but I've also noticed a correlation with flare-ups of the Crohn's which makes me think it's related. Yay for summer starting soon here!

Reading that Methotrexate didn't do anything for your Arthritis makes me hope that a low dose of aza will do the trick as I really prefer cheap pills to injecting myself and all the hassle that comes with travelling with temperature sensitive injectables (Humira, is Methotrexate the same?) for trips of around 33 hours one way to see my mum who's on the other side of the world!
 

Lady Organic

Moderator
Staff member
Hi Layla,

best way for absorbtion of methotrexate for IBD is by injection, but pill versions do exists. 2 friends of mine with Rheumatoid arthritis take the pill version. If you are ever on this treatment, you could possibly get the pill version for the time of a trip and return to injections upon return home. I may be wrong but i think there is also a original version of methotrexate which is stable at room temperature but does have more conservative agents inside. I took the magistrale version to avoid all possible useless chemicals...

if your correct diagnosis is osteoarthritis, I dont know about the phamaceutical route for it, aside from plain simple anti-inflammatories or cortisone injections. I have never heard conventional treatments (methotrexate, AZA, sulfa, biologics) for IBD arthritis or RA being prescribed for OA. My grand mother has severe OA (including joint replacement surgeries) and was never proposed these options.
When we have IBD, the diagnosis of joint issues becomes more difficult to pin point i guess, just like in your case maybe and different kinds of joint arthropathies may overlap as well. With trials, hopefully you will come to find something that works for you. Do you have a rheumatologist?

have you tried tumeric curcuminoid extract? I find it helps me. Something you could ask your doctor about.
 
Still taking 100mg a day (things improved without needing to increase dosage). I've had an awful cough for almost 2 weeks now which i can't seem to shift though. Guessing its cause my immune systems weakened? :confused:
 
Thanks again Lady Organic, that's given me lot's of questions to ask. I don't have a rheumatologist, yet. If things don't improve soon I'll ask for a referral, unless my GP can confirm it's definitely OA.

I'm taking glucosamine with curcuminoid extract btw but don't notice any improvement, I used to but not anymore.


Kelly81, I would assume so. I've had a nasty cough for at least 4 weeks and it's only slowly improving now.
 
3 year old will start taking Imuran when the compound prescription is filled. He will be taking this along with his bi-weekly Humira. The Dr. has told us they will have to do regular checks on his bone marrow and liver. I didn't think to ask how the tests are done and how often? I automatically just thought blood tests like usual but I really have no clue.
 

DustyKat

Super Moderator
@cre - They are blood tests. Full Blood Count and Liver Function Tests. This is a pretty standard regimen:

• How do you monitor CBC and LFT when starting therapy?

Leukopenia and hepatotoxicity most commonly, but not exclusively, occur soon after commencing thiopurines, or upon dose escalation. This means frequent blood monitoring is needed during the first 3 months of therapy. During the first 4 weeks, I recommend weekly CBC and LFT, followed by alternate weekly for the next 4 weeks, and then again at 12 weeks. This is a cautious approach aimed at detecting any leukopenia promptly and before infectious complications can occur. Thiopurine methyltransferase (TPMT) is an enzyme crucial to thiopurine metabolism, levels of which are approximately inversely proportional to the risk of developing leukopenia. If you are able to measure TPMT activity prior to commencing immunomodulator therapy and it is normal, then it is possible to reduce the frequency of initial testing to monthly, although routine bloods are definitely still necessary.
Have a read of the full article…

http://www.healio.com/gastroenterology/curbside-consultation/%7B67faf0e0-974c-4f86-a430-d735ef89a8d7%7D/how-do-you-monitor-patie

Dusty. xxx
 
Well after a week of restarting Aza at only 25mg all my symptoms were back so I've stopped taking them altogether.

I've now started on Pentasa and if that doesn't work then MTX is next.

The iron infusion is making a difference and I'm slowly becoming less breathless all the time., I've even started walking in the hills again, yay!
 
Hey everyone.
I'm about to start Imuran, as soon as the pharm gets it in, and as always, I'm nervous about new meds. I'm currently on Pred 30mg, newly dx CD, and thankfully Doc wants to treat me with meds instead of surgery for now. Curious about the beginnings of Imuran, how long does it take to start working?
 
Supposed to be 3 months before it starts working but don't listen to that. I had positive response years ago in a month. It is a great med. Get off of the prednisone asap!
 
You will feel amazing on it. It does the trick but side effects are too risky down the road. Good luck w the imuran! It'll enable you to get it off the prednisone.
 
Hi all. I am recently diagnosed with Crohn's (Oct 2014). I have been on 9mg Entocort since then and now getting ready to add Azathioprine. We are just awaiting my TMPT results before I start. Those should be here next week. Doc wants me to start with 50mg twice a day and increase after one month by 50 mg and then add the final 50mg. Of course I will be having routine blood tests every two weeks during this time.

I have been told that I will probably experience nausea, fatigue etc. I have read the material available here and online concerning the side effects. Now looking for real people experiences. Looking for tips to help me through adjusting to the medication. Any signs I should watch out for that might be an indicator that I am having a bad reaction? Praying that I have good results and little side effects but also want to do what I can to help prevent side effects. I know we are all different and experiences vary greatly. Thank you.
 
Hi Reflection
I started Imuran last May in much the same way sounds like you are being told to. Except I take the whole daily dose at once. I did have some nausea especially when the dose was increased to 200mg but found if I plan to take right after dinner it was significantly better.

I did however, notice early on when the dose was increasing, I was having a significant increase in hot flashes (I am also surgically menopausal) and had some headaches too. Initially the blood work was only for a CBC which all looked good. But the flashes persisted and it was very bothersome. Soon after I switched doctors and they decided to do a Complete Metabolic Panel. It showed very elevated liver enzymes and they reduced my dosage by 25 mg every two weeks until the blood work improved. I did find that my Crohns symptoms were much better but did not stay that way on the lower dose which is now only 75 mg daily. I too take Entocort at 9mg.

My advise is to be sure to tell your doctor about anything that seems unusual. The nausea is definitely better when taking with food. And be sure you blood work includes the CMP.
Good luck! Hope this helps
 
Thanks Sarah. Yeah she definitely said she would checking liver enzyme levels and kidney. I have had past issues with my enzymes going through the roof. It was a cdiff infection and my gallbladder shut down. I was soooo sick. I will watch the hot flashes too. I don't have them now so that would be a big clue for me. So thanks because otherwise I would have assumed it was my estrogen getting out of whack.

Note #1 on helpful hints list: Definitely, remember to take after eating! #2 Hotflashes aren't necessarily because I am old. :)
 
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