Posted 9/27/2007 5:33 AM (GMT -7)
UCinNC: I don't have the hair loss problem that some folks evidently experience. I know when I comb my wet hair after a shower, I always get quite a few strands, and I see quite a few strands in the shower, but i don't think it's any more than normal. At least I don't feel like my hair is thinner or there's less of it.

Joz: Good luck with going off the Azathioprine. My understanding of this drug's use in treating UC is that it's a maintenance drug, designed not to so much get you out of a flare (like prednisone would), but to keep you flare-free. If that is the case, it seems counterintuitive to go off of it. I think of my immune system like a simmering pot, and when it boils over, it attacks my colon and I have a flare. The Imuran/Azathioprine keeps the heat down just enough that the pot doesn't boil over.

Unfortunately, when you are starting a course of Imuran to try to "turn down the heat" to prevent the pot from boiling over, it takes a long time to effect that change, so I guess I see that as another reason why going on and off the drug just makes no sense to me.

But best of luck to you, whatever you decide.

BTW, if you are maintaining remission at only 50 mgs of Imuran, you are at quite a small dose. Another reason to perhaps reject the advice of going off and risking a flare???

Mitz
Sporadic proctitis since about 1985. Mother had UC, then J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Prednisone, two courses of Flagyl, then Vancomycin finally got rid of it. Symptomatic with UC after that.
Colonoscopy in 2001 dx'd left-sided UC. Was pretty darn ill at that time. Treated with prednisone, Rowasa, Asacol. Asacol not working so switched to Imuran. Three small flares since in 2002, 2005, and 2007.
Gall bladder attack 6/13; ultrasound showed stones; surgery before end of 2007.
100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression) daily.

Posted 9/27/2007 5:51 AM (GMT -7)
I actually asked my GI about this yesterday. I have been on Imuran for over a year and was curious as to whether I would ever be able to stop taking it. My GI said he wants to see 4 years symptom free and then we can discuss it. At this point I am too scared to rock the boat and have no problem continuning to take it. I do feel I get sick a lot easier and for longer periods of time....guess I just have to deal w/ this!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

https://www.healingwell.com/donate
Co-Moderator UC Forum

Posted 9/27/2007 6:08 AM (GMT -7)
My liver enzymes went up so I pulled myself off it (6mp)... I feel fine.. Doctor says "Hey if you feel good ..I feel good."
Male 36yrs old. Indeterminate Colitis 6 yrs.

100 mg 6-mp
Lialda 2 a day

Protonix
multi vitamin

Posted 9/27/2007 7:51 AM (GMT -7)
I havent had hair loss either.  I have very thick hair, so I proabably wouldnt notice unless it was extreme.  I had huge hair loss on Rowasa though.  I lost 1/2 I swear in 6 months.  I was so scared. 
 
I dont know what my Dr. would say about going off Imuran anytime soon...He really feels this is keeping me in remission.  3 years in remission hasnt happened for me since I was a teenager.  My flares are so hard to get over, and with 2 small boys and a job, I dont have time for more complications if I dont have to.  I work with kids as well, and did expect to get sicker on Imuran with colds and such...but that was temporary.  I think my immune system holds up pretty well..and I am on 150 mg.
 
 
Currently in remission since September 2004!!!  I am on Imuran 150 mg and am LOVING life!

Posted 9/30/2007 12:39 PM (GMT -7)
I work with kids too and so far haven't been getting sick hardly at all even when everyone around me is - how does that work? I did get a cold a couple of weeks ago and was scared I wouldn't be able to egt rid of it since my last blood test results weren't good- the white blood cell count and some other immune defense marker had dropped quite low, but within a week I was better - it's quite confusing this whole being immunosuppressed whan our immune systems were in "overdrive" attacking us anyway. So doesn't it just bring it back down to normal?
I was told by a GP once that they aren't supposed to call them immunosuppressants anymore but "immunomodulators" as they don't just suppress the immune system but change the way it works...?

Mitz: I'm on 50mg as I have "the enzyme" that means I metabolise it differently and half the normal dose works in the same way as the full dose would on someone who doesn't have "the enzyme"...
27 yr old female
Diagnosed Feb 2005 with pancolitis
Asacol: 2x3 daily, 50mg Imuran (since March 2006-in remission)
Multivitamin, SCD yoghurt
 

 

Posted 9/30/2007 4:11 PM (GMT -7)

Joz, do you remember what you WBC count is? Mine is low as well. I think its 3.7. I am being watched but it was low even when I wasnt on this drug. So much for getting off Aza anytime soon, it doesn't seem to be working at the amt I'm taking(100mg) so they may have to raise my dosage.

I haven't gotten any colds either, knock on wood. Its time for the flu shot too!

take care

Donna 


Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins

Posted 10/2/2007 3:12 AM (GMT -7)
Hi Donna,
Sorry, I don't know what my WBC count was - I didn't ask?! But I know that since I've been on the Aza, my count has been in the normal range and then dipped for some reason - got the GP surgery panicking and phoning me telling me to stop my medication. Lucky I've got more sense than to listen to them - they don't even know what I'm on it for and always direct questions to the reumatology dep of the hospital!
 
Anyway after the next blood test the WBC had gone back up to normal and the other one (not sure what that was) was almost normal. My consultant just told me to be really careful when my counts were low and that if I did get any kind of infection that I may have to stop the Aza for a little while to fight the infection....? that's why I was surprised that my body managed to fight a cold all by its little self at that time!
 
I don't know what to do about the flu shot either as I know they supposedly sent me out a letter last year as I saw it on my records, which I never received and when I asked them about it they told me I wasn't in the risk category? very confusing...
27 yr old female
Diagnosed Feb 2005 with pancolitis
Asacol: 2x3 daily, 50mg Imuran (since March 2006-in remission)
Multivitamin, SCD yoghurt
 

 

Posted 10/2/2007 6:45 AM (GMT -7)
I would advise anyone to get a flu shot. It can't hurt and it certainly can help prevent flu.

My doc said "yes" when I mentioned I was on Imuran. He also gave me a pneumonia shot.

Get your flu shot every fall. Most insurances pay 100% of the cost because they don't want to pay the costs associated with treating flu -- and neither do you.

I've had a couple of episodes of bronchitis and pneumonia. Being self-employed means I don't get paid if I can't work. DOUBLE OUCH!

Mitz
Sporadic proctitis since about 1985. Mother had UC, then J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Prednisone, two courses of Flagyl, then Vancomycin finally got rid of it. Symptomatic with UC after that.
Colonoscopy in 2001 dx'd left-sided UC. Was pretty darn ill at that time. Treated with prednisone, Rowasa, Asacol. Asacol not working so switched to Imuran. Three small flares since in 2002, 2005, and 2007.
Gall bladder attack 6/13; ultrasound showed stones; surgery before end of 2007.
100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression) daily.

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