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Took the plunge~started Azathioprine

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Posted 7/9/2010 8:38 PM (GMT 0)
Well, after just over a month of deliberation and talking to numerous health care professionals and to members of this forum, I finally agreed to start the Azathioprine.  Did my baseline bloodwork on Tuesday and then started that night.  So, far, no problems (not that I am expecting any) other than my urine being extremely dark in color a couple of times last night, almost brown in color. 

Talked to my GP today at the hospital (luckily she was on call in the ER and I was on admitting :-) ).  She did a urine test to make sure there is nothing alarming..........haven't heard anything......no news is good news. 

Unfortunately, this weekend is crazy for me with my husband's family reunion and one of my sisters-in-law has a bad cold.  Will have to stay away from her shakehead   which sucks because she is one of my favorites.  And my sister has a bad cold, too, and I am working for her today, but she disinfected her work station for me before she left yesterday. 

Keeping my fingers crossed that all will go well. 

Hope everyone is having a great summer so far.

Posted 7/9/2010 8:57 PM (GMT 0)
Good for you! I hope it helps. I started about a month ago and I am still tapering off of prednisone but I am scared my symptoms will return. I know it can take 3 months for the drug to be full effective. I am having a prometheus blood test in a few weeks to see if my dose needs to be adjusted. I am just hoping for good news. Goodluck to you!
Posted 7/9/2010 9:44 PM (GMT 0)
When I started Aza the GI had me increase the doseage over a few days, 50 for three days, 100 for three then 150. 50 was fine but when I started 100 the lethargy they talk about really kicked in! Sitting on the couch, staring at the ceiling - no desire to do anything. After a couple of days I moved the dose to the evening and although I could still feel a bit of the lethargy I slept through most of it. After about a week things seemed to settle back to normal.

Hope your weekend goes well.
Posted 7/9/2010 10:29 PM (GMT 0)
Thanks to both of you for your replies.

I am taking the pill at night to avoid the nausea that so many people get.  So hopefully that will help me avoid any lethargy if it is one of the side efftects. The last thing I need is to be more tired than I already am. :-)

Posted 7/10/2010 12:01 AM (GMT 0)

Good luck BCGirl.  I am alos on Aza.  It's been good to me so far and knocked my UC into remisson.  Again good luck.

MyUC

Posted 7/10/2010 2:12 AM (GMT 0)
Good luck! I don't have any side-effects and it also put me into remission. (Flaring due to other problems, not the aza failing, lol)
Posted 7/11/2010 5:17 AM (GMT 0)
I just started the Aza on June 30th - 100 mg per day, and I'm also taking it at night to try and avoid the nausea. I could tell a bit of nausea the first week or so, but once that subsided, I can't really notice anything different. I'm also taking 4 Prednisone every morning, and 4 Sulfasalazine 500 mg every morning and night. I'll be glad to get off the Prednisone!!!

Post Edited (Sick-of-UC!) : 7/10/2010 11:23:02 PM (GMT-6)

Posted 7/12/2010 4:22 AM (GMT 0)
I just started AZA as well, I work nights so I am always tired but I am definitely feeling the lethargy. Which does me absolutely no good because I'm pretty lethargic from being depressed anyways. I have actually noticed an increase in symptoms in the last 2 weeks, but that could be from stress. Idk, just my 2 cents on the whole AZA experience.
Posted 7/12/2010 10:55 PM (GMT 0)
I just stopped taking AZA....I could barely function with how tired I am.
I saw my doc. last week, but didn't tell him I'm off it. I know that's stupid, but I've had this for 20 years, am 30 years old, and feel like sometimes I need to control what I do/don't do. My GI refers to AZA as "chemo," does anyone else's?
I did some research about AZA, and the two main sites don't even list lethargy as a side affect!
I may start again just so I can continue to taper off the Prednisone, but it's been nice not being so tired all the time. I know caffeine is a no-no with UC and Prednisone, but one day I had 4 Pepsi's and an iced-coffee in the hopes of perking up, and still felt exhausted!
Posted 7/12/2010 11:21 PM (GMT 0)
I wasn't aware that caffiene is contraindicated when using Prednisone and with UC.  I have it all the time.  I am about to have one right now. 

Posted 7/13/2010 2:55 PM (GMT 0)
I also started the 1 week ago today.
50mg for first week, 100mg second week and 150mg daily after that...
Apparently i'm now prednisone dependent, so I am tapering that along with the AZA.

I should update my signature, but I figured i would chime and add myself to the newbie list in case any questions arise.

sigh...so it is.
Posted 7/20/2010 9:42 PM (GMT 0)
Just my two cents on Azathioprine (or any immunomodulators for that matter). Keep up on your blood work - make sure your GI is closely monitoring. I might even seek out a hematologist to monitor you on this drug.
I had such a quick and severe reaction to Azathiorpine after being on it for about a year it did serious, long lasting, damage to my bone marrow. It took an Endocrinologist & hematologist almost a year to get me fixed.

This drug is fantastic for many people but you must insist that your Dr. be on top of blood work as it can have severe side effects.

Good luck, hope it works for you!
Posted 7/20/2010 10:12 PM (GMT 0)

UC in UT:

I am also on Azathioprine and have been on it for more than a year.  It has worked very well for me and has kicked my colitis into remission.  One bowel movement a day.  I have my blood closely monitored, every 3 months.  In fact I just had a CBC, C reactive test, ESR, differential, Liver function tests.  All came back normal.  I am just curious.  What problems did you develop?  I have pressed my GI doc about negative side effects.  He works out of a very busy GI clinic with over 20 GI docs.  They have over 1500 patients on 6MP and Imuran.  He said he has never known of a negative side effect.  I really pressed him, he still couldn't come up with any patients who had side effects from long term use.  He did say that for some patients the immunomodulators don't work.  They make them sick but those patients find very quickly.  It usually happens within the first 1-2 weeks of use.

So, I am curious when you say it damaged your bone marrow what that specifically meant.  Please explain.  So far so good with me.

MyUC

Posted 7/21/2010 12:51 AM (GMT 0)
Hey MyUC,
I am really glad Azathioprine is working for you...I was just sending out a warning flag. However, it surprises me that your GI has never seen any serious side effects. My GI also works in a statewide office (Utah Digestive Health Institute) of over 30 GI's. They use this drug with extreme caution as they see frequent side effects at about the 9-18 month mark of use.
I went ahead and copied a link as well as the specific warnings related to severe blood disorders that can possibly be caused by this drug.

The warning specifically mentions the "severe bone marrow suppression" I mentioned in my post. The problem with a CBC, Liv Panel test, etc. are that they do not check specific markers of early onset of bone marrow suppression. That is the only reason I recommend a hematologist be involved as they order more specific tests that indicate issues early on.

As for me, I felt great...got a cold...turned to pneumonia and after 5 weeks in the hospital (including a week in ICU) they discovered my bone marrow was basically not functioning due to the drug. It took a year to fix me

I know everybody is different but this is a serious drug, that needs to be monitored carefully. If monitored correctly and problems occur your body metabolizes the drug so quickly after cessation disaster is easily averted.

Good luck!

http://www.drugs.com/pro/azathioprine.html

Warnings

Severe leukopenia, thrombocytopenia, macrocytic anemia, and/or pancytopenia may occur in patients being treated with Azathioprine tablets. Severe bone marrow suppression may also occur. Patients with intermediate thiopurine S-methyl transferase (TPMT) activity may be at an increased risk of myelotoxicity if receiving conventional doses of Azathioprine tablets. Patients with low or absent TPMT activity are at an increased risk of developing severe, life-threatening myelotoxicity if receiving conventional doses of Azathioprine tablets. TPMT genotyping or phenotyping can help identify patients who are at an increased risk for developing Azathioprine tablets toxicity2-9 (see PRECAUTIONS: Laboratory Tests). Hematologic toxicities are dose-related and may be more severe in renal transplant patients whose homograft is undergoing rejection. It is suggested that patients on Azathioprine tablets have complete blood counts, including platelet counts, weekly during the first month, twice monthly for the second and third months of treatment, then monthly or more frequently if dosage alterations or other therapy changes are necessary. Delayed hematologic suppression may occur. Prompt reduction in dosage or temporary withdrawal of the drug may be necessary if there is a rapid fall in or persistently low leukocyte count, or other evidence of bone marrow depression. Leukopenia does not correlate with therapeutic effect; therefore the dose should not be increased intentionally to lower the white blood cell count.

Read more: http://www.drugs.com/pro/azathioprine.html#ixzz0uGtxwPlX
Posted 7/21/2010 1:44 AM (GMT 0)

UC in UT:

Thanks for the reply.  I am not talking down to you but I have to say that the series of CBC check the wbc and all the cell lines that go with it.  Meaning I guess it could suppress your bone marrow to a very low level but that would be picked up on a routine CBC because it's checking exactly what your bone marrow is doing.  I already lowered my dose from the original 200 mg to the now 150 mg and after my next colonscopy this fall will consider lowering it maybe to 100 mg. 

I realize that it's a strong drug but my immune system was in over drive.  My wbc was shooting into the 40k mark (normal 4-11 k).  The asacol I was taking wasn't touching my UC and the prednisone wasn't really helping either.  The next logical step was 6MP or Imuran or just jump to Remicade/Humira.  What else is there besides surgery?

Again, I thank you for your advice, I will keep it in my mind.  So far so good.  The GI doc I am working work is extremely please with the results.  No side effects, etc...  However I will keep what you said.  There are a group of us here on this site that use Azathioprine with great success.  What is the protocol then of the GIs you work with in UT?  

MyUC 

Posted 7/21/2010 2:21 AM (GMT 0)
Hey My UC,
I don't think you are talking down to me at all. As all educated UC patients we have a fairly solid understanding of basic blood work (i.e., you mention that CBC will include not only WBC but all the components that are percentages of your WBC such as lymphs, neuts, monos, etc.).

My specific problem occurred for several reasons that a basic CBC won't necessarily pick up and indicate a certain drug. We all know that NEUT's can be elevated by stress, kidney problems, etc. Lymphs can be high due to flu, chronic inflammation, etc. Infection can elevate one indicator and lower another - it can become more complicated than some GI's pick up on.

Also, other drugs you may be on like prednisone, TNF blockers, etc can elevate, or lower, any component of the blood. That is why I say a GI is not always the best person to really evaluate blood work.

The protocol of my GI was monthly CBC with & without Diff., CRP (not for CV risk), CMP and Hepatic Function. The problem was that the numbers moved around, up and down, bad and good so much he could not attribute the issue to the Azathioprine - too many other factors clouded the issue. Also, I didn't feel sick (other than I had terrible colitis).

I had really bad luck but I know at least a dozen other people that have had severe blood reactions to this drug due to the fact that their GI did not pick up, or was confused by, the blood work. All of them had complete recovery by simply stopping the drug.

Again, good luck
Posted 7/21/2010 3:39 AM (GMT 0)

Good points to ponder.  Azathioprine is the only drug I take.  That's it.  Also my numbers were fluctuating before I started it.  My immune system needed some modulating I guess.  Since taking it everything has normalized and stayed consistent.  My CBC's, Liver function tests, etc... are normal and never fluctuate.  Again, things can change in the future.

Again thanks for your input UC in UT.  Sorry Aza didn't work out for you.  I will be on top of my tests to keep sure things are going well. 

MyUC

Posted 3/29/2016 12:55 AM (GMT 0)
How often do your doctors do bloodwork for Azathioprine? Monthly?
Posted 3/29/2016 1:02 AM (GMT 0)
Azathioprine often starts with weekly blood monitoring, then reduced to biweekly, reduced to monthly, and finally kept at tri-monthly for the duration you're on aza. It's reduced once you get good results.
Posted 4/13/2016 3:24 AM (GMT 0)
I just started Imuran.

Both my WBC and Neutrophils and RDW were elevated. Not sure how much of that is due to still being on some Prednisone. (Tapering now.)

I wonder why my GI doc is only doing my Imuran blood work in 30 days? Yikes.

If I start having any symptoms, I may ask my GP to do bloodwork on the other alternating 2 weeks.
Posted 4/14/2016 12:52 AM (GMT 0)
My GI outlined what it will entail when I start Imuran or the like. He said he would like blood tests every two weeks for some months, then one a month, and eventually every three months.
I was kinda glazed over so I didn't ask whether he meant this change in timing would happen over the course of one year or five! lol

In the meantime, maybe with luck I can get the darned Prometheus done.... (already vented about that.)

How much pred are you on at this point, Em-who?
Posted 4/14/2016 1:28 AM (GMT 0)
Well the dose of imuran/azathioprine/6mp always is started low, and they raise that dose slowly. During that time, you're going to be monitored more regularly. I'd guess, 6 months or so until you're on trimonthly monitoring... maybe a little sooner or later. The blood tests are a bit annoying but very important.
Posted 4/14/2016 4:54 PM (GMT 0)
I've been on 6mp for 10 years and am only having my first big flare since 2006 right now. It has worked wonders for me and no side effects. It's worth a try if you're miserable now. Your doc can monitor how much stays in your system with a blood test. If it's too high they can adjust and so on.
Posted 9/6/2017 9:28 PM (GMT 0)
I'm new here.... Hi everyone.

First got U.C in 2005 real bad but managed it fine up until the past couple of years.

I just got back from a sigmoidoscopy.
Been having constant flare ups since last April when I got C-dif after massive amounts of I.v antibiotics including Clindamycin.
Dr wanted me to go into hospital this evening after seeing how bad and how much my bowels bleeding but I really am tired of hospitals at the moment and talked around the idea.
I have started 40mg Prednislone and 50mg of Azathioprine morning and 50mg at night.
Must admit the possible side effects are a little offputting.

Look forward to hearing how others are getting on with it.

All the best.
Posted 9/7/2017 6:10 AM (GMT 0)
I took 150mg per day of azathioprine for months. I noticed no side effects. Discontinued because my white blood cell count eventually went low. But I didn't seem to help much either.

BTW my UC got much worse a couple of months after I took oral Clindamycin; I suspect it permanently altered my gut microbiome.
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