Share Facebook
Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Imuran/Azathioprine/6-MP Support Group


 
10-12-2013, 02:19 AM   #301
grandmajese
 
grandmajese's Avatar
 
Join Date: Apr 2013
Location: Myrtle Creek, Oregon

My Support Groups:
I've been on Imuran and Humira for about 6 weeks now. So far so good. White cells are holding up but I'm still anemic, apparently bleeding for 2 years will do that. I did get the blood test to make sure that I could metabolize the Imuran. I refused to take it other wise, my doc was very annoyed but it's my health not his! I strongly suggest getting the blood test but it is spendy. The humira shots don't hurt if I do them in my stomach, on my thigh they burned bad. Turns out the metformin for my type 2 diabetes IS part of the problem. Why he would give me something that causes diarrhia when I already HAVE diarrhea ? Doctors are stupid sometimes. You never should just take their word for it!
10-12-2013, 09:06 AM   #302
Ckoenig
Senior Member
 
Ckoenig's Avatar
I've been on Imuran and Humira for about 6 weeks now. So far so good. White cells are holding up but I'm still anemic, apparently bleeding for 2 years will do that. I did get the blood test to make sure that I could metabolize the Imuran. I refused to take it other wise, my doc was very annoyed but it's my health not his! I strongly suggest getting the blood test but it is spendy. The humira shots don't hurt if I do them in my stomach, on my thigh they burned bad. Turns out the metformin for my type 2 diabetes IS part of the problem. Why he would give me something that causes diarrhia when I already HAVE diarrhea ? Doctors are stupid sometimes. You never should just take their word for it!
I am lucky I have one of the best Dr's in this area. She automatically had me do the blood test first before even considering putting me on the med.

Perhaps you should consider a better/new doctor? I really think that is key. Treatment will only be as a good as your Dr. is considerate and intelligent.
__________________
Christina 34, MS Clinical Mental Health Counselor NCC at the Center for Integrative Therapy in Westport, CT. Trader Joes employee part time.

Mother of Tyler (13) Twin Girls Rian (11) Victoria (11)
My girlfriend is amazingly supportive!

Dx'd with Crohn's Disease 8/29/2013 6 inches of diseased terminal illeum. As of December 2014 currently in remission!

Humira as of Dec 18
B-12 injections monthly
2,000 iu Vit D daily
250 mg florastor probiotic 2 x daily
.25 Xanax as needed
10-12-2013, 01:56 PM   #303
Josephine
Senior Member
 
Josephine's Avatar
 
Join Date: Jan 2011
Location: Middlesbrough

My Support Groups:
I can join please, seem to new medication that I am going starting by Sept. Thank you

Not starting yet but some now I think next two months.
__________________
Acid Reflux for 15 years med

Sacroiliitis and add to grew list auto immune diseases.

Now on Lansprazole 15 mg And Gavin son 5mg-10mg 3a day.

Crohns from Oct 2007
Domperidone 10 mg -20 mg, Mebeverine 135 mg,
3 a day.
Balsalazide 750 mg 3 X3 a day on going.
Bone protection.

Azathioprine is not working, still waiting to find out what next. Still on low dosage Prednisolone

Mesalamine Enema


No Wheat

English my native language and have characterizes of dyslexia.
10-15-2013, 06:14 PM   #304
Twbuto
 
Twbuto's Avatar
 
Join Date: May 2013

My Support Groups:
Hi folks. After Humara and Cimzia have failed my Dr is testing me for Imuran. I have heard of many potential negative side effects to 6mp. I am a J-pouch patient , so without a Colin ,my surgery options are getting limited. Any pouch patients with Crohns , could be helpful advice.
All have a great day.
11-02-2013, 07:02 PM   #305
Twbuto
 
Twbuto's Avatar
 
Join Date: May 2013

My Support Groups:
Hi folks. I am currently taking Cimzia and Imuran. 2 months and 2 weeks respectively. No improvements to date, but my stomach pains seem to be pronounced every time I eat. It really does not make a difference what food is, these shadow pains and or severe pains begin. Is this common for Crohn's disease to flare up in this manner. This is relatively new to me. And observing blood in the stool is also more prevalent. Good luck to all. And stay well.
11-03-2013, 08:18 AM   #306
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Sorry your not feeling well, twbuto. Have you let your GI know and are you getting labs done regularly? You need to make sure your liver numbers are not getting out if whack and some people experience pancreatitis. Best to let your GI know about your pain to rule those two out. That being said, it can take Imuran three to six months before you'll know if it's working for you, so you're still on the early side.
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
11-03-2013, 08:24 AM   #307
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Many thanks to the group here. Unfortunately, or maybe fortunately, we are moving to Remicade. DS will take Aza at 25mg until his second Remi dose and then he's done with Aza.

We just got his thioprine levels back and while everything looked good on paper and he's been at therapeutic levels for five months, he continues to have extensive inflammation, acquired an abscess and fistula and has flared twice in this short time. Posting from the hospital right now... so, time for him to move on.

Best of luck to you all!
11-03-2013, 05:03 PM   #308
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Mehita, it sound like a good decision to move on.

Wishing you all the best.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-03-2013, 08:13 PM   #309
kh216
Forum Monitor
 
Join Date: Jul 2012
Location: Barrington, New Jersey

My Support Groups:
Mehita,
I also think you are doing the right thing. I heard that Remicade is one of the best medicines for treating fistulae. When someone has fistulae, abscesses and extensive inflammation, it is probably best to move on to a biologic medication, such as Remicade.
__________________
6mp
Lialda
Vitamin D and B 12
Calcium
11-10-2013, 09:18 PM   #310
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
How often should the imuran levels be tested?

My daughter is due for a blood test and her levels haven't been checked for 4 months and its not on this blood test form.

Should l be asking for it to get tested as her last levels were high but the DR wasn't concerned as everything else was normal.
__________________
Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



11-10-2013, 10:01 PM   #311
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Sarah's been on aza for 22 months, and had levels tested 3 times.

Will probably get them tested again in January which will be four months between tests.
11-11-2013, 01:12 AM   #312
Carl207
 
Carl207's Avatar
 
Join Date: Mar 2013
Location: Ashland, Kentucky

My Support Groups:
Been on aza since aug. 2012 (100mg) a day. just recently went to 200mg a day and finally noticed a difference. still taking 5mg of prednisone a day and humira. no hair loss, and fatigue is better. had a j-pouch since '95, been suffering from crohn's since '00, can't wait to shed this body and bury it as the rotten flesh that it is. born from above with Christ is why I can talk this way.
11-11-2013, 03:25 AM   #313
Twbuto
 
Twbuto's Avatar
 
Join Date: May 2013

My Support Groups:
You similar to me. J-pouch 1994. Crohns 2007, having potential stricture issues , have taken every med under the sun, just waiting for another surgery or a miracle drug. But hanging in there, tomorrow is another day. Take care friends.
11-11-2013, 09:03 AM   #314
Sunshine Cat
 
Sunshine Cat's Avatar
 
Join Date: Sep 2011
Location: Florida

My Support Groups:
Since i started Cimzia and aza i have not had a any real problems except for a little dizzyness.
11-14-2013, 07:25 AM   #315
Josephine
Senior Member
 
Josephine's Avatar
 
Join Date: Jan 2011
Location: Middlesbrough

My Support Groups:
Official starting Azathioprine 100mg today with 8 weeks course of Steroids.
11-15-2013, 05:18 PM   #316
Josephine
Senior Member
 
Josephine's Avatar
 
Join Date: Jan 2011
Location: Middlesbrough

My Support Groups:
Best thing that Nurse said to me was 'trying stay away from viral infections' well 3 daughters 16,13 and 9 also volunteering at my daughters community choir. Never going happened. lmao
11-17-2013, 06:39 PM   #317
Ribo
Senior Member
 
Ribo's Avatar
 
Join Date: May 2013

My Support Groups:
Best thing that Nurse said to me was 'trying stay away from viral infections' well 3 daughters 16,13 and 9 also volunteering at my daughters community choir. Never going happened. lmao
You really do have to be careful. Several weeks ago I found myself in the hospital for two weeks with fungal pneumonia. I missed a month of work and I am still taking it easy after nearly eight weeks. I'm still having blood work done to check the fungal infection levels, and I get fatigued very easily. At the time I was on the unholy triad of Prednisone, Remicade and 6MP. I'm doing better now but I've certainly learned to take washing my hands and watching with what and whom I come into contact seriously. Immunosuppression is no joke, and even though its hard sometimes, it really does need to be taken seriously.

I mean, I've read different articles that put the condition I had at between a 50 and 90% mortality rate in immunocompromised patients. That's rather scary to think about. Fortunately I not read the articles AFTER I was well on my way to recovery, or I might have freaked out a bit.

My point is, I really ignored the immunosuppressive and it wound up making me very, very sick, so it's dangerous to ignore that sort of guidance.
11-18-2013, 12:42 AM   #318
SMSIRL
 
SMSIRL's Avatar
 
Join Date: Oct 2011
Location: Dublin, Ireland

My Support Groups:
Absolutely right Ribo. It is time for the filtered water etc. furthermore, acquiring an infection can trigger a flare quicker that you can say where's my pred. It is also time to make sure your sub-unit vaccines are in place. Before you start on immunosupression is the time to get any live-etenuated vaccines you might need. Make sure you're TB non-reactive, and recognise that non-reactivity can be misleading if you are already immunosupressed. It is th en important to avoid acquiring TB de-nouveau.
You don't need a bubble, but you need to act as if you were a nurse treating a vulnerable patient - it just happens that you are that patient.
11-18-2013, 04:38 AM   #319
Josephine
Senior Member
 
Josephine's Avatar
 
Join Date: Jan 2011
Location: Middlesbrough

My Support Groups:
Thank you Ribo and Smsirl for the advice, I understand total what you're said as well my IBD Nurse but you trying explain to 13 years old who manage 2 whole days of school last week because of virusthat you want cuddle but you can not. Same for 9 year old.

I have got doctors this come Friday 22nd for Flu Vaccine every year and Pneumococcal which will be every 5 years. Bloods weekly for 6 wks, fourthnight for 6 wks then monthly.

Last edited by Josephine; 11-18-2013 at 07:55 AM.
11-20-2013, 08:48 AM   #320
Josephine
Senior Member
 
Josephine's Avatar
 
Join Date: Jan 2011
Location: Middlesbrough

My Support Groups:
I have being taking 100 mg aza since 14th last Thursday with 40 mg pred which going down to 0mg as weeks go on.

I have uneven shoulders and jaw issues which cause migraines but my question is:

From Sunday I have suffer from constantly migraine on right side, normal from 30 mins of wake up. I am also trying not pop parcemotol first thing of wake up even the area of stomach is painful.

Any suggestion. Is make my eye hurt and I think also getting sinus infection again.

Last edited by Josephine; 11-20-2013 at 09:12 AM.
11-20-2013, 11:33 PM   #321
Davebc
 
Davebc's Avatar
 
Join Date: Nov 2013
Location: Vancouver, British Columbia

My Support Groups:
Hi - I'm new here and just getting ready to start Az and I am scared and filled with anxiety. Was anyone else extremely nervous before starting on the drug?
11-21-2013, 03:03 AM   #322
Josephine
Senior Member
 
Josephine's Avatar
 
Join Date: Jan 2011
Location: Middlesbrough

My Support Groups:
Not really, I have anxiety issues because the Crohns. I can walking about 10 mins and sometime on good days 20 mins without having panic attacks. Any where further car bus or wait partner.

Good luck.

P.s I suffer with rectal bleed, I have being Melsamisine ezmena which help little but back now.

Should wait or phone nurse?
11-21-2013, 06:10 PM   #323
KaylaJB
 
KaylaJB's Avatar
 
Join Date: Nov 2013
Location: Duncannon, Pennsylvania

My Support Groups:
I will be starting to take Imuran tomorrow! I have heard of some nasty side effects such as Skin Cancer and Lymphoma and honestly, I'm a little scared to take this med. Have any of you had any bad side effects? Thanks!!
12-03-2013, 07:01 PM   #324
iriechic
Senior Member
 
iriechic's Avatar
 
Join Date: Jul 2013
Location: St. Petersburg, Florida

My Support Groups:
I started 6MP two weeks ago. Stopped it temporarily because daughter, son, hubby, and me all caught a bug. GI advised to stop it for a few. Anyway, I had GYN appointment today and Nurse Practitioner looked at me like I'm nuts to be on 6MP. Well, it's not like wanted colitis nor to need such drug. What makes this worse is that my husband wouldn't take it if it were him, that makes me feel guilt that I do take it. Of course, he has no clue what it feels like to have IBD. Just needed to vent to people who understand.

Do any of you feel glad to have 6MP/AZA/Imuran to help?
12-03-2013, 07:18 PM   #325
michelle222
 
Join Date: Nov 2013

My Support Groups:
Hi Iriechic,

I am sorry that you're getting such harsh reactions to using 6MP. I was on it for awhile and recently stopped because of my concerns about side effects, etc. I am a pretty big hypochondriac so I found myself so concerned about the side effects that I couldn't handle it anymore..

THAT BEING SAID, there are a lot of people on here who have taken 6MP and had very positive experiences with it. It's hard when your family/other people aren't necessarily on the same page with your treatment. No one can say what they would or would not do in your situation unless they are experiencing your disease themselves. Even among fellow people with Crohn's and UC, the experiences can vary drastically and no one can tell you what's right for you other than yourself. Hang in there, I totally understand what it's like to have your treatment decisions questioned. Best of luck with whatever you choose.
12-03-2013, 07:32 PM   #326
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Hi, it hard when people question our decisions. My daughter had been on aza for almost 2 years. She is seems to have had less colds etc while on this med.
12-03-2013, 08:39 PM   #327
iriechic
Senior Member
 
iriechic's Avatar
 
Join Date: Jul 2013
Location: St. Petersburg, Florida

My Support Groups:
Thanks for your replies. Hopefully, the 6MP is doing what it is supposed to and the chills/fever were same bug my husband (and family) just had. I wasn't so concerned about taking it until people (family, friends, other non-GI med specialists) give their opinions. If I could opt to not have colitis, I would!!! Wish it was that easy.

Thanks for your understanding!
12-04-2013, 03:24 PM   #328
Twbuto
 
Twbuto's Avatar
 
Join Date: May 2013

My Support Groups:
Imuran newby here,,does anyone notice mouth sores, like canker sores, or cracks in the corners of your mouth. Since beginning Imuran , about 8 weeks ago, I've developed canker sores and mouth sores in the corner of my mouth. Any thoughts friends??
12-05-2013, 08:02 PM   #329
iriechic
Senior Member
 
iriechic's Avatar
 
Join Date: Jul 2013
Location: St. Petersburg, Florida

My Support Groups:
Twbuto,
My accupuncturist said those cracks in sides of mouth can be from not absorbing B vitamins. I'm not sure about cankersores inside the mouth. Never hurts to ask the GI MD if it's normal.

Take Care
12-05-2013, 08:48 PM   #330
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
The cracks on the inside of the mouth can be angular cheilitis or yeast infection. If it is yeast they make a liquid called Nystatin that will clear it right up. You can get it by prescription, not sure if they sell anything over the counter.
__________________
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
Reply

Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Imuran/Azathioprine/6-MP Support Group
Thread Tools


All times are GMT -5. The time now is 04:29 PM.
Copyright 2006-2017 Crohnsforum.com