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


 
11-28-2016, 07:14 PM   #961
ronroush7
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11-29-2016, 02:57 AM   #962
DEmberton
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Sorry to hear that Ron. I hope that's the last of it. I guess it's a case of increased risk rather than "caused by".

Now that it definitely has started working for me the blood test last week showed liver results slightly out of range. They want me to repeat the test, but it may be that I'll be reducing the dose already.
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Diagnosed May 2014
20cm Terminal Ileum and Ileocaecal resection July 2014
125mg Azathioprine
12-16-2016, 05:21 AM   #963
DEmberton
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Now that it definitely has started working for me the blood test last week showed liver results slightly out of range. They want me to repeat the test, but it may be that I'll be reducing the dose already.
I've been told to reduce the dose from 150 to 100mg. I hope that doesn't meant the symptoms creep back.
12-16-2016, 07:23 AM   #964
ronroush7
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Best of luck to you.

05-24-2017, 04:21 PM   #965
CarolinAlaska
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I'm cross posting this from parents with IBD:

Jae had blood work in the ER last Wednesday and her white count was 1.3. The next day it was 1.7. I think it was suppressed from a virus she had been fighting. She was then in the hospital (not GI related) and it was never checked again. The hospitalist who discharged her said that she should recheck it in a couple weeks and not restart the 6 MP until then. She is now a week without 6 MP. What consequences will we have if she doesn't take it for 2 weeks? I cannot get anyone to answer the phone for the past week at GI, and still waiting for a call back from rheumatology from today. I'm concerned. Should I be? Her WBCs have never been below 4 and were like 4.7 the previous week. Mostly I'm concerned what her Crohn's is going to do as backlash for not being on the immunosuppressant for 2 weeks.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
05-24-2017, 11:06 PM   #966
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I would not worry. I was on a stable deep remission with 6-mp for years and it took about 9 to 12 months after stopping it for the disease to come back. of course everyone can react differently, but I would not worry too much for a 2 weeks off. I have been asked a few times to stop 6mp for a few days (up to a week, if i remember correct, for the WBC to reajust to normal) and then readjust the dose. Hopefully this WBC drop was really caused by the virus so she can return to usual dose asap.
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''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: 50mg 6-MP (Purinethol)+ B12 shots


Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA (pill, rectal), cortifoam, Imuran, Purinethol, methotrexate.
05-25-2017, 06:05 AM   #967
CarolinAlaska
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When is a low white blood count worrisome? Should she be avoiding crowds, wearing a mask?
05-25-2017, 09:36 PM   #968
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from the Mayo clinic :
''Because a chronic very low white blood cell count makes you vulnerable to infections, ask your doctor about precautions to avoid catching contagious diseases. Always wash your hands regularly and thoroughly. You might also be advised to wear a face mask and avoid anyone with a cold or other illness.''

this is not a case of chronic low WBC, but maybe just be more vigilant around people until situation resolves. Its a chance for you that colds season is mostly over by now.
06-07-2017, 11:52 AM   #969
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Hi,
Sorry if this has been answerd before but i haven't checked the whole post.

I have recently been put onto Aazathioprine, Budesonide and Ciprofloxacin.
When i was given the meds they told me that i was unable to drink alcohol on them. To my understanding i am on this as a "permanent" thing until they think to change them, does this mean i cannot drink until i finish/change meds or can i stop taking them for a few days, drink and then keep taking them?
(i also read online that on Budesonide i should not drink due to the dizziness it causes?)
The Aza is a "permanent" thing whereas the others are for about 3 months.
After the 3 months can i drink or what?

Im 18, in the UK and am going to uni in september and do not want to miss out on freshers week (a week of pure drinking/partying before term starts, essentially the best weeks of Uni).

I know its not for this thread but what about Marijuana but are there any serious effects known when mixing Aza and weed? smoking would be both recreational but also a bit for my crohns.

Thanks,
FruitPastel.
Thanks in advance for anyone helping <3
06-07-2017, 01:25 PM   #970
ronroush7
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I,if possible, would not stop a medication and then start up again.

06-07-2017, 03:58 PM   #971
emmaaaargh
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Hi,
Sorry if this has been answerd before but i haven't checked the whole post.

I have recently been put onto Aazathioprine, Budesonide and Ciprofloxacin.
When i was given the meds they told me that i was unable to drink alcohol on them. To my understanding i am on this as a "permanent" thing until they think to change them, does this mean i cannot drink until i finish/change meds or can i stop taking them for a few days, drink and then keep taking them?
(i also read online that on Budesonide i should not drink due to the dizziness it causes?)
The Aza is a "permanent" thing whereas the others are for about 3 months.
After the 3 months can i drink or what?

Im 18, in the UK and am going to uni in september and do not want to miss out on freshers week (a week of pure drinking/partying before term starts, essentially the best weeks of Uni).

I know its not for this thread but what about Marijuana but are there any serious effects known when mixing Aza and weed? smoking would be both recreational but also a bit for my crohns.

Thanks,
FruitPastel.
Thanks in advance for anyone helping <3

I started uni last September and have been on aza for about 5 years. Honestly drinking on aza is fine as long as you don't overdo it because the aza is processed by the liver. I'm not a HUGE drinker (can always remember a night out ) but I stick to low- or no-alcohol drinks just because my Crohn's acts up when I drink. I would think that the marijuana would be ok as well although I've no evidence to base that off of and have never tried it so I've got no experience to offer. Enjoy Fresher's Week! It's a really good time, really takes the stress out of getting used to living in a new place.
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Hi, I'm Emma!
20 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Inflectra 5 mg/kg, azathioprine 37.5mg
06-08-2017, 04:50 AM   #972
DEmberton
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Nobody ever told me not to drink on those. And I have. Though I never had all three together.

I think just be sensible. Certainly don't stop taking them. If you're feeling dizzy on taking them you probably aren't going to want to drink anyway, which is probably why they say it as it could make side effects worse. But I found both with Budesonide and Azathioprine I only had a little bit of nausea/dizziness for the first couple of days, and then only for an hour or so after taking them, and after that had no issues.

Can't see any problem with cannabis as such, but smoking won't do you any good. I sometimes wonder if it was having too many of the funny fags at University is part of the reason I got Crohns at 23.
06-08-2017, 04:54 AM   #973
DEmberton
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On a possibly related note: Last year they had me reduce my Aza dose from 150mg to 100mg as my liver results were out of range. I saw the consultant again recently who said that it probably wasn't anything to do with Aza after all, and the recent tests have been fine so now I'm on 125mg to see what happens.

Makes me wonder if I was/am drinking too much.
05-24-2018, 12:34 AM   #974
Lynda Lynda
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I just started 6mp 12 days ago. Will have a blood draw soon. Then see my GI.

After reading a few posts here I think that this wierd feeling I get in my head occasionally is a side effect of the 6mp. It is a "off balance" kind of feeling, not a dizzy feeling. The first time it happened I thought it was a panic attack. But then it happened 2 or 3 more times since then. Best not to drive while this is happening.
06-05-2018, 02:53 AM   #975
Lynda Lynda
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Will 6mp cause neuropathy.
I'm scared.
Tonight part of my left side of my abdomen is numb from my left hip to my belly button.This is a large area.
Now I am having a panic attack.

I have a scar near my left hip from a kidney surgery 11 years ago and that scar area has always been numb since then. Also, part of my left foot has been numb for years and I have never had that checked out, it has just become "normal" to me. I even feel a small numb area close to my tailbone and that has been recent.

I have Spina Bifida Occulta and a low-lying tethered spinal cord.

And I believe I have been breathing in second-hand epoxy fumes in my apartment, possibly coming from a newly renovated apartment near my apartment.

I'm scared.
06-07-2018, 12:47 AM   #976
Lynda Lynda
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Ok then.

I am going to call my Gastroenterologist office tomorrow.
Good Night.
06-23-2018, 03:20 AM   #977
Lynda Lynda
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This.....thread......dead. R.I.P.⚰
09-18-2018, 02:04 PM   #978
Lynda Lynda
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No activity on this thread, but it says 6mp. Where are people talking about 6mp on this forum ?

I want to know how long a person has been taking their 6mp pills ? Have you been taking them for a few months at the beginning of your treatment for Crohns, or every day for years ? I don't like the side effects. Bye.
09-18-2018, 02:06 PM   #979
Madhu
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No activity on this thread, but it says 6mp. Where are people talking about 6mp on this forum ?

I want to know how long a person has been taking their 6mp pills ? Have you been taking them for a few months at the beginning of your treatment for Crohns, or every day for years ? I don't like the side effects. Bye.
Hi Lynda, my husband took 6mp at the start of his treatment for 6 months. He didn't like the side effects either. I read that taking it longer has risks of other complications

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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
09-18-2018, 03:05 PM   #980
Lynda Lynda
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09-18-2018, 07:23 PM   #981
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Hi Lynda,
I have been taking 100mg azathioprine daily since Aug 24 and wasn't sure if this is the same as 6mp or not. (No side effects so far.) I did a little research and found this informative page:
https://humanpara.org/mercaptopurine...oprine-imuran/
I am not very science oriented and some of this page was "over my head" but there's some good information on both types of drugs there. I hope your side effects aren't too bad. The list of them on this page is scary!
09-18-2018, 08:46 PM   #982
Lynda Lynda
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09-19-2018, 09:00 AM   #983
eleanor_rigby
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Hi Lynda. I have been on azathioprine since April 2016. It generally works for me but I have problems with my white blood cell count falling too low, which means currently my dose is too low to keep me in remission. Hoping to discuss this at my next appointment.

I feel the vast majority of people on this forum tend to be from the USA. Not sure if that's correct, but just a personal observation. And the doctors in USA tend to either not prescribe 6mp/aza much these days, or prescribe it briefly and then move on. I am sure if I lived in the USA I would not be taking aza right now. The doctors in the USA much prefer the top-down approach whereby biologics are prescribed. They are very expensive so it is pretty difficult to be prescribed them in the UK so you will find more of us on 6mp/aza. I think this may explain why this thread isn't very active.
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History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
09-19-2018, 12:08 PM   #984
Lynda Lynda
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eleanor, thank you for responding and I hope your appointment goes well. Oh, lots of folks here from other countries.....check out the Weather thread, lots of nice folks there from USA and UK and Canada and Australia. You can chat a bit more than about the weather too. 🙂
09-29-2018, 02:33 PM   #985
Lynda Lynda
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How long does 6mp stay in your bloodstream after you stop taking it?
10-01-2018, 08:06 PM   #986
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I have been taking Aza 50mg daily for years in support to Cimzia and now for 2 years Remicade with no issues - but a low dose to stave off antibodies. I had to stop Humira due to antibodies.
10-01-2018, 08:27 PM   #987
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I have been taking 100mg a day of azathioprine since Aug 25 this year and just had my first Remicade infusion last week. Still on 15mg prednisone daily and trying to back off that slowly. I'm not sure how long it takes for these drugs to kick in, or how long it takes for them to leave your system once you stop taking them. I have days of really bad belly pain and hard masses forming in my abdomen. I massage them and they finally dissipate accompanied by loud gurgling noises. I think all that is a result of a stricture, and not any of the drugs. I am sure it's the prednisone that keeps me awake at night.
10-04-2018, 04:41 PM   #988
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NuttyGuts, how did your First Remicade infusion go?
10-04-2018, 05:51 PM   #989
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Hey, Awoenker12,
The day of the infusion was uneventful, but man, the next day was hell. Those hard masses forming in my abdomen were usually in the lower right, and only occasional. But the day after the Remicade, they were all over- even higher up- and much more often. And I was exhausted. But ever since then, I've been back to the norm, so I guess it was just my body reacting to the sudden "drug dump".
How are you doing- do you think the Remicade is going to be a long term solution for you? Have you given any thought to the Specific Carbohydrate Diet? I hear a lot of folks say it works to keep you in remission without drugs, but I don't know if I can pass up all those carbs I love so much, like bread and pasta! I can't do that diet right now anyway, because of the stricture. (Some days all I can get down are white rice and protein drinks with sugar in them.) But maybe after surgery...
10-04-2018, 08:01 PM   #990
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NuttyGuts, wow, that sounded rough. Hopefully those hard masses in your abdomen will get better. I will admit, the first infusion is the worse. I personally do not get any side effects from the Remicade.

Anyway, I had an appointment with my GI today. He decided that Remicade is my long term solution. The Remicade has been working wonders for me, I actually feel like a normal person and have normal stools like normal people do haha.

As for the Specific Carbohydrate diet, I have not thought about that much. Right now I like eating anything I want without causing problems, and I personally not a fan of dieting, but if it means taking no medication, it may be a risk I might take in the future.
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