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Imuran/Azathioprine/6-MP Support Group

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'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.
 
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.
 
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.
 
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.
 
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!
 
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.
 
Location
,
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.
 

Catherine

Moderator
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.
 
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.
 
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.
 
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
 
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.
 
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.
 
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.
 
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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.
 
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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?
 
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?
 
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!!
 
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?
 
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.
 

Catherine

Moderator
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.
 
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!
 
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??
 
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
 
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.
 
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??
As said above angular cheilitis - yeast infection is usual cause. At this stage into treatment a set of bloods would be appropriate and can check to see if there is a need to modify dosage etc. It also will provide you with an opportunity to get appropriate treatment for your mouth sores.
 
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?
Yes I was, particularly as there is a family history of various blood cancers. Therefore I didn't proceed until the approaches I was on were not giving adequate relief. It is a balance between the profile of your experience of your illness, the nature of the side-effects, and history that might weigh in the choices.
 

CarolinAlaska

Holding It Together
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?
Absolutely. They just don't understand what a miracle these meds are!
 

CarolinAlaska

Holding It Together
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??
How's your B12 level? I read earlier that someone else had that problem with AZA...
 
Thx for responses on cracks in the corners of my mouth. Since my B12 and vit and mineral levels are fairly decent, I'm treating with a yeast infection creme. So far some improvement. Since my last EGD examine showed a yeast infection in my esophagus , I think this is a logical route. Funny, I thought a yeast infection was a women's issue. The older I get, the dumber I realize I am.
 
Thx for responses on cracks in the corners of my mouth. Since my B12 and vit and mineral levels are fairly decent, I'm treating with a yeast infection creme. So far some improvement. Since my last EGD examine showed a yeast infection in my esophagus , I think this is a logical route. Funny, I thought a yeast infection was a women's issue. The older I get, the dumber I realize I am.
This may be a silly question, but is yeast fungal? I know remicade makes one particularly susceptible to fungal infections, and of course 6MP reduces our immune systems. Fungal infections can be very, very tough to resolve. I've been fighting one for a few months now.
 
This may be a silly question, but is yeast fungal? I know remicade makes one particularly susceptible to fungal infections, and of course 6MP reduces our immune systems. Fungal infections can be very, very tough to resolve. I've been fighting one for a few months now.
No question is silly, except the one that should but isn't asked.

Yes, yeasts are fungi. They can be though to resolve. Various ointment and medications are available. When used, they must be used well after the infection has been resolved. Otherwise it will return and the treatment may not work next time. If it is a body infection it is also important to clean items of clothing, bed clothing, etc.

In addition it is useful to remember that all living things have evolved to survive in specific environment. Knowing the environment that fungi need can help us in dealing with them.

The typical fungus prefers moist, warm, dark places. So by changing any of this improves the chances of clearing them up. For example athlete's foot is a fungal infection. You would keep your feet dry. If you were not likely to get your feet wet - you could wear sandals to let light in, reduce the moisture, and reduce the temperature. Similar principles, apply to fungal infections of the groin, arm pits etc.

Yeast and other fungi spread easily. So, if you have athlete's foot for example, put on your socks first. This means that your underwear will not carry the fungus from your feet to your groin.

Before the advent of modern treatments, thrush in groin, axillae, and vagina was treated using a vinegar douche. The mild dilution of vinegar changed the pH of the area and thereby inhibited the growth of the fungus.

The most important thing is keeping the area dry if at all possible
 
Mouth ulcers can be a symptom of Crohn's.

I've taken Aza before, and have currently been on 150mg/day for the past 7 months with no observed side effects other then neon yellow urine shortly after taking it. The damage that I did to myself by not taking it far out weighs any side effects from taking it.
 
Well, I got off to a decent two weeks on 50mg 6MP. Then, a bug went around in my family. All I got was chills/fever...wondering if 6MP does that or likely just a cold bug? So, I was off 6MP for 1 week. Started it back last Fri. This past Mon. I had my PEG tube changed to a Mickey Button (much more discreet). I am prone to D with colitis but it had settled to more formed stools (albeit floaters) on 6MP. My first visit to the toilet, on Tues., after the exchange to the Mickey was a nightmare. I got the worst cramps, sharp pangs, knew I didn't have long to make it to the porcelain throne. I had insane, explosive, smelly D (lots). I would equate it to the pain I had with rotovirus D. D persisted Wed. and today, Thurs. Graphic gruesome warning: today it was yellow and 4+ bouts, with overall unwell feeling. I am no stranger to C.Diff, had it once this past May. Concerned to have it again, was on Keflex in Oct. for staph parotitis. Informed GI of symptoms and she called in oral vancomycin for me. Once again, I was told to hold off on the 6MP.

Now my questions (and thank you if you've read this far):
Can I stop/start 6MP and it still work?
Could 6MP cause C.Diff to recur?
I have had some joint aches on 6MP, but always have mild degree, is this an issue? --- I hope not because Remicade was ceased for neuropathic arthritis.
I have history of candida infections ever since my last pregnancy because I was on 36+ weeks antibiotics for Group B Strep UTIs. Is 6MP dangerous to one prone to yeast? Any suggestions welcome.

GI has me starting with bi-weekly blood work. Did it promptly at two weeks and haven't heard a word. Is that strange? Next week will be four weeks, unsure if I test b/c temp. stop of 6MP.

It's been a rough few years. Celiac DX in 2010. Lymphocytic Colitis 2012. Tried GAPS diet-caused flare! Entocort- Aug.-Nov.2012. Remicade-failed it.
 
Hi iriechic,

First of all, it sounds like you are having a really tough time, hang in there!

I don't really know the answers to your questions but hopefully you have a good GI who you can talk to. I suggest documenting all your questions and taking them to your next appointment.

With regard to recurrent candida, not sure about the 6MP but I guess any immunosuppression could increase the risk. There are definitely options for prevention of this if it is a problem, such as dietary (reduced sugars and yeasts in diet), hygiene (frequent towel changes) and medical eg. Oral fluconazole. Recurrent candida not dangerous but pretty annoying I'd say!

With regard to blood work, you'd hope they'd call if it was not satisfactory. I'd put in a call to your GI and check it was ok and if you need more tests because of stopping the 6MP.

Hope that helps,
ZestforZen.
 
Welcome to the group. I have been on Imuran for a while. I have heard it can lower your resistance to infections. I wish you the best. Recently, I thought my dosage of Imuran was going to be increased. My holistic doctor prescribed Vitamin D and L -Glutamine to strengthen my gut.

2
 
Well, I got off to a decent two weeks on 50mg 6MP. Then, a bug went around in my family. All I got was chills/fever...wondering if 6MP does that or likely just a cold bug? So, I was off 6MP for 1 week. Started it back last Fri. This past Mon. I had my PEG tube changed to a Mickey Button (much more discreet). I am prone to D with colitis but it had settled to more formed stools (albeit floaters) on 6MP. My first visit to the toilet, on Tues., after the exchange to the Mickey was a nightmare. I got the worst cramps, sharp pangs, knew I didn't have long to make it to the porcelain throne. I had insane, explosive, smelly D (lots). I would equate it to the pain I had with rotovirus D. D persisted Wed. and today, Thurs. Graphic gruesome warning: today it was yellow and 4+ bouts, with overall unwell feeling. I am no stranger to C.Diff, had it once this past May. Concerned to have it again, was on Keflex in Oct. for staph parotitis. Informed GI of symptoms and she called in oral vancomycin for me. Once again, I was told to hold off on the 6MP.

Now my questions (and thank you if you've read this far):
Can I stop/start 6MP and it still work?
It takes about three months for 6MP to build up in your system so no, stopping and restarting repeatedly is not an effective strategy.
Could 6MP cause C.Diff to recur?
6MP won't cause CDiff. However, it does lower your ability to fight infections. Once you're immunocompromised the chances of contracting anything is increased.
I have had some joint aches on 6MP, but always have mild degree, is this an issue? --- I hope not because Remicade was ceased for neuropathic arthritis.
I have history of candida infections ever since my last pregnancy because I was on 36+ weeks antibiotics for Group B Strep UTIs. Is 6MP dangerous to one prone to yeast? Any suggestions welcome.
I know remicade can make you susceptible to fungal infections. I'm not sure if 6MP specifically does the same, but in general it reduces your immune system, so it's certainly possible you could see increased incidence of infections. You have to be careful to pay attention to your surroundings, avoid folks with sicknesses such as flu, and wash your hands often. Also a flu vaccine and pneumonia vaccine have been recommended to me (but make sure not to get a live vaccine!)

GI has me starting with bi-weekly blood work. Did it promptly at two weeks and haven't heard a word. Is that strange? Next week will be four weeks, unsure if I test b/c temp. stop of 6MP.

It's been a rough few years. Celiac DX in 2010. Lymphocytic Colitis 2012. Tried GAPS diet-caused flare! Entocort- Aug.-Nov.2012. Remicade-failed it.
 
My GI is at an IBD conference this weekend. However, her nurse called and told me that my pancreatic fecal elastase test was abnormally low at 100. The other pancreatic test, trypsin serum, should have results by next Tues. I do not know what to do. I am rather concerned since I was unable to speak to the GI about this. I wonder if I need to see a pancreatic specialist? Or have other pancreatic tests done? Wonder if I will have to discontinue 6MP? I don't want to stress all weekend. Praying for a healthy biochemistry for each of us. God bless!
 
I have taking 100 mg Azathioprine for 10 weeks also started with 40 mg pred steroids, still on 20 mg steroids. Still have signs of flaring. Just got over water infection but ibd nurse is test for water and stool infection. Also not digest food property. MRI on 1st of FEB.

By rights I should not still be steroids.
 
Starting a 6mp for the first time next week if my labs come back ok, i am already on lialda and probiotics but my crp and white cound are high and bm's are horrible. I already have problems with yeast and am B12 deficient is this going to possibly make things worse.
 
Once you have been on Aza 3-4 months they can test the level of medication in your blood. There is a range that is consistent with remission. If you are below that range, increasing your dose could help. If you are already in that range and still having symptoms then it may not be a strong enough medication for you. (Or just not the right med).

My son started 6mp (sister drug to Aza) at the same time as Prednisone. He was fully weaned off the prednisone after 12 weeks of being on 6mp. By then his levels were therapeutic. I should also note that prednisone worked very well for him, he had normal CRP and ESR (inflammatory blood levels) 6 days after starting Prednisone. So, it may have been that the Prednisone kicked him well enough into remission that the 6mp was able to keep him there. I would ask your dr what your blood levels have been doing since you started prednisone so you know if it has been effective or not.

Did the Prednisone kick you into remission?
Is the Aza level in your blood high enough to keep you in remission?
 
Once you have been on Aza 3-4 months they can test the level of medication in your blood. There is a range that is consistent with remission. If you are below that range, increasing your dose could help. If you are already in that range and still having symptoms then it may not be a strong enough medication for you. (Or just not the right med).

My son started 6mp (sister drug to Aza) at the same time as Prednisone. He was fully weaned off the prednisone after 12 weeks of being on 6mp. By then his levels were therapeutic. I should also note that prednisone worked very well for him, he had normal CRP and ESR (inflammatory blood levels) 6 days after starting Prednisone. So, it may have been that the Prednisone kicked him well enough into remission that the 6mp was able to keep him there. I would ask your dr what your blood levels have been doing since you started prednisone so you know if it has been effective or not.

Did the Prednisone kick you into remission?
Is the Aza level in your blood high enough to keep you in remission?
Hi Johnnysmom,

I have being Aza 11 weeks tomorrow, as Prednisone 40mg. Now Aza 100 mg and 15 mg Pred. Blood level show that Aza is working. I have Crohns Sigmoid colon to Splenic Flex Sigmoid. I know but now I think spread further.

I have flaring since March last year, while taking steroids on and off from March to Nov. With remission only never last 2-4 weeks. I was also admit to hospital just before Christmas for 4 days for high dosage and iv steroids.
Since new year I have gone down hill with all same symptoms but pain is both sides of large bowel now.
 
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I started taking Imuran two weeks ago and so far just feel very tired with a very reduced appetite. Has anyone else experienced this? Is it short-term? I go for my blood test tomorrow and if everything comes back ok, my Dr will double the dosage.

I'm training for a couple of races but struggling to find the energy so naturally worrying about this. Also, I picked up my son's cough as soon as he developed it which is worrying. I know Imuran suppresses the immune system but the thought of picking up every illness is a little depressing, especially when I run as much as I do and illness makes it harder.

Guess I'm feeling a little low about it all and looking for some positivity :)
 

hawkeye

Moderator
Staff member
I started taking Imuran two weeks ago and so far just feel very tired with a very reduced appetite. Has anyone else experienced this? Is it short-term? I go for my blood test tomorrow and if everything comes back ok, my Dr will double the dosage.

I'm training for a couple of races but struggling to find the energy so naturally worrying about this. Also, I picked up my son's cough as soon as he developed it which is worrying. I know Imuran suppresses the immune system but the thought of picking up every illness is a little depressing, especially when I run as much as I do and illness makes it harder.

Guess I'm feeling a little low about it all and looking for some positivity :)
Not sure if the tiredness and reduced appetite could be active disease. I have been on Imuran for 23 years and have not noticed it as a side effect, I don't remember if I had any side effects when I started it as it was within 6 months of being diagnosed.

I have a little guy in the house too and I think that you have a tendency to pick up whatever germs they bring home regardless if you are on Imuran or not.

What distance are the races? I ran a bit but haven't since May as I am awaiting surgery.
 
Hawkeye,
Thanks for your response :) I do have active disease which is why my GI prescribed the Imuran but the tiredness over the last couple of weeks, along with the reduced appetite, is a new thing. I don't think it's related to the running as this will be my third year of training for a marathon (the races I have coming up are a half and a full marathon) so I know what physical exertion tiredness feels like and this has been different. To be honest, I get a high from the running/training which is why I keep doing it; it makes me feel great and I also feel like I'm fighting my Crohns so it gives me a mental boost too.

It's fantastic to hear you've been on it for 23 years and so you obviously do very well on it. I need to hear positive stories like yours! I'm wondering if I've just been over-thinking the whole thing. I've got a sore throat and a cold, shared by my lovely son haha, and maybe that's why I've felt so rubbish and maybe it's just a coincidence. I tend to worry about taking medications but my GI said I was risking a blockage if I didn't take something more than Pentasa to reduce the inflammation so it's not like I have a choice but I'll be honest, I'm not a fan of taking prescription medications and they scare me.

I had my bloods taken today and everything came back OK so as of tomorrow, my Imuran dosage is doubling to 100mg. I guess I'll see how my body reacts to the increase but I'm trying to stay hopeful.

I'm sorry to hear you can't currently run, it must drive you nuts. Good luck with your surgery! :)
 
Hi folks. My current "program", term used loosely, is Imuran and Cimzia This has been my tool box for about 6 months. 100mg daily Imuran and 400 mg injections of the Cimzia. Along with many vitamin supplements, I feel 1000 mg of vit c daily has helped with not getting colds and viruses. Good luck to all, and keep the faith.
 
Once you have been on Aza 3-4 months they can test the level of medication in your blood. There is a range that is consistent with remission. If you are below that range, increasing your dose could help. If you are already in that range and still having symptoms then it may not be a strong enough medication for you. (Or just not the right med).

My son started 6mp (sister drug to Aza) at the same time as Prednisone. He was fully weaned off the prednisone after 12 weeks of being on 6mp. By then his levels were therapeutic. I should also note that prednisone worked very well for him, he had normal CRP and ESR (inflammatory blood levels) 6 days after starting Prednisone. So, it may have been that the Prednisone kicked him well enough into remission that the 6mp was able to keep him there. I would ask your dr what your blood levels have been doing since you started prednisone so you know if it has been effective or not.

Did the Prednisone kick you into remission?
Is the Aza level in your blood high enough to keep you in remission?
What would I be looking for specifically in the blood test ? I've been on aza for about 3.5 months at 50mg a day and don't feel the dose is high enough.As I am not feeling any better yet. I have a doctors appointment tomorrow and would like him to drawn my blood and test it to see if it's in that range you speak of . Thanks !
I've never used the quote option, hope I did it right :ylol:
 
No question is silly, except the one that should but isn't asked.

Yes, yeasts are fungi. They can be though to resolve. Various ointment and medications are available. When used, they must be used well after the infection has been resolved. Otherwise it will return and the treatment may not work next time. If it is a body infection it is also important to clean items of clothing, bed clothing, etc.

In addition it is useful to remember that all living things have evolved to survive in specific environment. Knowing the environment that fungi need can help us in dealing with them.

The typical fungus prefers moist, warm, dark places. So by changing any of this improves the chances of clearing them up. For example athlete's foot is a fungal infection. You would keep your feet dry. If you were not likely to get your feet wet - you could wear sandals to let light in, reduce the moisture, and reduce the temperature. Similar principles, apply to fungal infections of the groin, arm pits etc.

Yeast and other fungi spread easily. So, if you have athlete's foot for example, put on your socks first. This means that your underwear will not carry the fungus from your feet to your groin.

Before the advent of modern treatments, thrush in groin, axillae, and vagina was treated using a vinegar douche. The mild dilution of vinegar changed the pH of the area and thereby inhibited the growth of the fungus.

The most important thing is keeping the area dry if at all possible

Oh this is interesting, I have had fungal toe nails for ages (I am talking years) and kind of assumed it was down to my ill health before I was on medication.

Then I didn't understand why it wouldn't go away once I was well again. Seems like the meds may be to blame now.

I have tried all sorts of paint on things that seem to improve it for a whille and then it fights back (even though I keep on using the product in the same way) the next step would be pills but I cant face putting anymore strain on my liver :yfaint:

Should I be trying vinegar ?
 
Thx for responses on cracks in the corners of my mouth. Since my B12 and vit and mineral levels are fairly decent, I'm treating with a yeast infection creme. So far some improvement. Since my last EGD examine showed a yeast infection in my esophagus , I think this is a logical route. Funny, I thought a yeast infection was a women's issue. The older I get, the dumber I realize I am.

I used to suffer terribly with sore mouth corners but only before I was diagnosed and on medication , I only get odd cracks now in the cold weather.
I also found yeast cream helped a bit, but what actually stopped it was zinc and caster oil nappy cream - I know that sounds like an odd thing to put round your lips but it worked wonders for me. It sooths and helps to heal whilst also forming a barrier to stop saliva and food from making it worse.
 
I'm about to start either 6MP or Imuran (in addition to Remicade which I'm already on), and I'm wondering how people decided which one to take. I've been looking through the archives, and it sounds like some work for different people better than others, so do you just pick one randomly and see how it goes? The doctors explained it to me that the main difference is one is easier to reduce dosage on than the other, but I'm a little lost on whether that's the best way to decide, and their explanation confused me (I wasn't feeling well that day). Just curious how others figured this out.
Thanks!
 

CrohnsChicago

Super Moderator
Hi aloe,

To answer your question: my doctor typically uses the bottom-up approach for treatment. He also bases his decision on the severity of my symptoms as do majority of the doctors.

With regards to 6-mp versus Imuran, It's a technical answer that boils down to preference more than anything. Sometimes based on a doctors experiences of successes in other patients. Both medications achieve the same result but they are just broken down differently within the body when consumed.

Imuran is first broken down into 6-mp in the liver then is processed. The medication 6-mp, however, simply goes directly to the liver for processing. One extra step eliminated.

As a result, you may require a higher dosage of Imuran than you would 6-mp. Side effects of both medications are similar.

Either choice is not a bad choice to start with, so long as you are receiving proper testing to make sure your body can tolerate the medications as there are risks of liver toxicity. If your doctor finds that you do not tolerate one, they MAY decide to try you on the other. However, it is more likely that they will jump to biologics than putting you in a potentially risky situation again.

There is evidence that those who are intolerant to Azathioprine [Imuran] may do better on 6-MP[mercaptopurine]. Unfortunately, data does not support the reverse being true, likely because Azathioprine is cleaved to 6-MP in the body.[2]
http://www.crohnsforum.com/wiki/Mercaptopurine

Your doctor should have given you a TPMT test to determine how well your body will tolerate both 6-mp and Imuran. If they have not, ask for one when you start taking the medication to see if your body is metabolizing (is accepting) the medication properly.
 
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Thanks so much for your response. I still don't know how to make this decision myself, but I have a much better understanding now. I think I'll ask my doctor what she would do, and follow her advice.

I just had a whole series of blood tests to prepare for this, but I don't know if I had the TPMT one. I'm guessing yes, since this doctor seems very knowledgeable, but I will double check. I know it was a little more complicated than a standard blood panel, because they had to send part of it to an outside lab (Prometheus). Maybe the results haven't come back yet, because all I've gotten results for are the CBC, Vit. D and B12 tests.

Thanks again!! This helps immensely.
 

CrohnsChicago

Super Moderator
yep. the Prometheus test is the TPMT test. Sounds like he's taking necessary precautions and giving you a thorough testing before making the final decision.

Wishing you all the best. I hope your treatment, whichever one you choose, turns out to be the one to get you into remission :hug:
 
I am currently sitting around mid flare waiting for a bloodtest to be taken. The doc was tapering me down on pred and I hit a certain level then boom flare happened. They finally bumped me back up to 30mg of pred but it isn't doing much help at this point. I have the person coming tomorrow to the house to test me if I am genetically comparable with imuram. Otherwise it looks like injections. Although I might want to try going back on mp6. It got me into remission back in junior high. I am currently on pred and pentasa. I'm in my junior year of college and it's rough right now. I hate putting my parents and girlfriend through seeing me like this. I have spent the day laying in bed. Eating crackers here and there. And drinking water. Some juice as well.
 
Aloe- I agree with everything that CrohnsChicago said. I found that it was my gastro doctor who had the preference between Imuran or 6mp. When I went to a gastroenterologist through University of Penn, she chose Imuran and it worked well for me. However, she took a break from her practice and I had to find another gastroenterologist. My present gastroenterologist has me on 6mp and that is also working well for me. However, I always follow his advice and get blood work done every 3months to monitor my blood count and liver function levels. This is very important to do if you are on Imuran or 6mp.
 
LCATC945- Are you on any other medications for Crohn's besides Prednisone? Perhaps going back on 6mp would be a good idea since it helped you so much before. Prednisone is a great medicine for getting you into temporary remission quickly. However, it is not a good medicine to stay on long-term because of its side effects. I would suggest talking to your gastroenterologist about further treatment options for you.
 
LCATC945- Are you on any other medications for Crohn's besides Prednisone? Perhaps going back on 6mp would be a good idea since it helped you so much before. Prednisone is a great medicine for getting you into temporary remission quickly. However, it is not a good medicine to stay on long-term because of its side effects. I would suggest talking to your gastroenterologist about further treatment options for you.
That's what the bloodtest I have tomorrow is supposed to do. I am just on prednisone and pentasa. They are trying to find an alternative to the prednisone. I'm just playing the waiting game.
 

CrohnsChicago

Super Moderator
I am currently sitting around mid flare waiting for a bloodtest to be taken. The doc was tapering me down on pred and I hit a certain level then boom flare happened. They finally bumped me back up to 30mg of pred but it isn't doing much help at this point. I have the person coming tomorrow to the house to test me if I am genetically comparable with imuram. Otherwise it looks like injections. Although I might want to try going back on mp6. It got me into remission back in junior high. I am currently on pred and pentasa. I'm in my junior year of college and it's rough right now. I hate putting my parents and girlfriend through seeing me like this. I have spent the day laying in bed. Eating crackers here and there. And drinking water. Some juice as well.
Very sorry that prednisone is not working for you. And that it is taking a toll on your relationships a little or at least how you view them and how you feel you are perceived by others. Unfortunately we all know the ups and downs of this medication. And we all desperately want to be off of it as soon as possible. But it is a necessary evil for majority of us until we can find the right plan to get things under control for the long-term.

You may want to discuss if you are able to try entocort instead of prednisone. It is a steroid that is designed to have fewer side effects of prednisone. It works for many on here who do not want to be on or cannot tolerate prednisone well.

Looks like your doctor is also doing the proper testing to see what your next treatment option will be. My only suggestion here is to discuss ALL your options in depth with your doctor. discuss the potential side effects both for individual meds and the combination of meds that you will take in the future. Discuss what the next plan of attack will be if this next treatment plan will not work.

I say this because I have heard from a number of people on the forum who say that once they get off of an immunosuppressor, the likelihood of trying that same medication again later on in the future and it working is lower than when you first started using that med. Good luck getting everything situated. If you do chose the 6-mp route I hope it is beneficial to you.
 

CrohnsChicago

Super Moderator
Hello paulwright.

Since that post, i have achieved remission through 6-mp.

The hair thinning continued on my hair my eyebrows and my eyelashes. Each time my dosage was upped the hair thinning got worse to the point I could see bald spaces around the top of my head and it looked as if I was losing hair though not much was falling out. I talked to my doctor about it and since I am in remission and also because my TPMT tests have been a little odd (it is working for me at lower than normal dosages, but my body has an unusual response to metabolizing 6 - mp though nothing of major concern), we have decided to lower my dose of 6-mp. We are also doing a slow taper off of asacol (also known to cause hair thinning).

It has been about two months since the dose change. I can say that my hair seems to be getting slightly better with this medication adjustment.

Also the nausea symptoms ended after a few weeks on the medication. This is a common symptom for those that just start taking imuran/aza/6-mp though not everyone experiences nor do they experience it for the same lengths of time.
 
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So my fraternity president just texted me and said that, "If you are that sick, you need to go to the doctor. You cannot keep missing class." He just doesn't understand that the doctors can't do anything right now. Seeing them is a waste of 4 hour round trip. I can't have anything done till a blood test happens. Which I've had to wait on because they have to come to me for some stupid reason. I have been in contact with my teachers. And with the dean. I am doing everything right. But because I miss classes apparently I am faking it because I don't see the doctor. I have called the doctor. Basically every two days. Same answer once I got maxed out on pred again. Can't do anything till blood test.
 
I've had the worst experience since my Dr increased my dosage of Imuran from 50mg to 100mg and I'm just wondering what a typical dosage is?

Basically, all of the nasty side-effects listed under the heading "stop taking and consult your Dr" has been my week. I first contacted my GI on Monday morning after having a really tough weekend. He advised reducing the dosage back down to 50mg for a week but as of today, I'm done with it and emailed him to explain I'm taking a break from the meds as I can't continue with the horrible side-effects. I feel extremely low and at this point feel like I don't want to take medication ever again :(

Has anyone had a similar experience?

Thanks in advance for any help/advice
 

CrohnsChicago

Super Moderator
Sarahlou. The dosage of imuran is primarily based on your weight because your body size as well as your metabolic testing done will determine how well your body will accept the medication. If your body rejects the medication you risk liver toxicity or pancreas and in that case the medication should be reduced or stopped immediately.

Have you had your TPMT test and blood work done? If not make sure your doctor does it (I refer to it a few posts above this) to make sure you are not experiencing any liver damage or developing signs of other serious issues
 
Sarahlou. The dosage of imuran is based on your weight because your body size as well as your metabolic testing done will determine how well your body will accept the medication.



Have you had your TPMT test and blood work done? If not make sure your doctor does it (I refer to it a few posts above this) to make sure you are not experiencing any liver damage or developing signs of other serious issues

This is why I have had to wait to go on imuram. Doc wouldn't put me on till after I had the bloodtest. Which I finally got yesterday. Now I have to wait until I get the results. To find out if I can even go on it.
 
I didn't have any testing prior to going on it but I had bloods taken after one week which obviously came back ok because that's when my GI made the decision to double the dosage. Initial side-effects were tiredness, loss of appetite and feeling full after small amounts of food. I also caught a cold straight away. I could have coped with those side-effects but after the increase in dosage, I started with a sharp intermittent pain in my hip and then diarrhea, nausea, shivering to the point of my teeth chattering then burning up til my clothes were drenched in sweat. In addition, headache and last night's new symptom; my back seized up so that I couldn't get from a sitting position to upright without help.
It's been a really tough week and I've spent a lot of it in bed, unable to keep my eyes open which is hard with 3 kids to look after.
 
I didn't have any testing prior to going on it but I had bloods taken after one week which obviously came back ok because that's when my GI made the decision to double the dosage. Initial side-effects were tiredness, loss of appetite and feeling full after small amounts of food. I also caught a cold straight away. I could have coped with those side-effects but after the increase in dosage, I started with a sharp intermittent pain in my hip and then diarrhea, nausea, shivering to the point of my teeth chattering then burning up til my clothes were drenched in sweat. In addition, headache and last night's new symptom; my back seized up so that I couldn't get from a sitting position to upright without help.

It's been a really tough week and I've spent a lot of it in bed, unable to keep my eyes open which is hard with 3 kids to look after.

That sounds terrible. I have been on MP6 before but not imuran. Which from what I've looked up is like an unprocessed version of mp6 because the imuran is concerted into mp6 in the body. (Could be wrong but that's what I remember seeing). I remember nausea and sensitivity to smell when I was on mp6. I'm hopin I won't get worse side effects
 
That sounds terrible. I have been on MP6 before but not imuran. Which from what I've looked up is like an unprocessed version of mp6 because the imuran is concerted into mp6 in the body. (Could be wrong but that's what I remember seeing). I remember nausea and sensitivity to smell when I was on mp6. I'm hopin I won't get worse side effects
Fingers crossed you won't. I know everybody reacts differently to medications and I guess I've been unlucky to have such a severe reaction. I'm just feeling really down because I've had a tough week and today was my daughter's birthday which I wasn't able to prepare for properly due to being sick. I emailed my Dr this morning to tell him I was taking a couple of days off it but I hot a response from the nurse telling me to stop altogether and mentioning either Remicade or Humira as options. I wasn't impressed with the response, it felt like she'd thrown her teddy because I'd contacted them again whereas she'd told me to wait til Friday.
 
Yeah the docs don't want to go to remicade or humira. That is the last ditch effort. And it sounds like even then it takes forever for people to get better on it. Or at least I've only seen horror stories about it. My doc told me he didn't want to jump to the injections because if to go off of them you can start to build up antibodies against them which will render them ineffective for the next time.
 
Hi
Have just been switched to 6mp after having major Nausea on aza. Have started on 75mg and in 8 weeks will have repeat tmpt. But right now I feel exhausted its like the most extreme exhaustion i have ever had. I hope its worth it in the end.
 
Yeah the docs don't want to go to remicade or humira. That is the last ditch effort. And it sounds like even then it takes forever for people to get better on it. Or at least I've only seen horror stories about it. My doc told me he didn't want to jump to the injections because if to go off of them you can start to build up antibodies against them which will render them ineffective for the next time.
Wow, my Dr was keen to go straight to Remicade and it was only because of my reluctance that we compromised on Imuran. The whole thing just scares me. I'm scared to do nothing and scared to take Meds because of their adverse reactions. Good luck LCAT, I hope the Meds work out for you :)
 
Hi
Have just been switched to 6mp after having major Nausea on aza. Have started on 75mg and in 8 weeks will have repeat tmpt. But right now I feel exhausted its like the most extreme exhaustion i have ever had. I hope its worth it in the end.
How are you coping with the exhaustion? I find that so tough to deal with and still look after my family :(
Do you think the care differs in the UK? My GI in the UK was always quite low-key, happy to see me every 12 months. Over here, my GI is very keen to get me on high-end Meds and frankly, it scares me.
 
How are you coping with the exhaustion? I find that so tough to deal with and still look after my family :(
Do you think the care differs in the UK? My GI in the UK was always quite low-key, happy to see me every 12 months. Over here, my GI is very keen to get me on high-end Meds and frankly, it scares me.
Totally agree UK GI Drs are not great, I tell mine how bad it is and she is like don't worry about it see you in 6 months. One dr i had years ago i said about being tired his answer was well we all get tired.

Hmmm as for the fatigue on 6mp since starting on it i have not found a way to deal with it. The only thing that helps is lying in bed with Netflix lol. Fingers crossed it will be all worth it anything to avoid surgery.
 
I have taken AZA 100mg only 2 times since my dr prescribed it. I get violently ill. Vomiting uncontrollably, I have ended up in the ER both times. I have taken zofran ODT, applied phenergan gel and crushed phenergan tabs to try and stop this horrible vomiting. Worth no relief. I missed 5 days of work because I have been so weak. Has anyone else done this?

Current meds
Synthroid 112 mcg
Protonix 40 mg
Pentasa 500 mg 8 daily
Budesonide 9 mg
Cipro 500 mg twice daily
Flagyl 500mg 3 times daily
AZA 100mg (suppose to be daily )
Zofran 4 mg as needed
 
Smartjweir, I never had a problem with azathioprine. However, if I had as violent a reaction to a medication like you did, I would want to stop that medication and take something else. If you haven't done so already, please call your gastroenterologist and let him or her know. I don't want you to continue to suffer like that.
 
Oh, em, sooooo .... I just took my 150mg of Aza, I usually take it in the morning but I forgot, well, I think I forgot. As I mentioned before, I just took my does this minute and I'm now debating whether or not I actually did take it this morning. If I did, that would equate to 300mg of Aza.

Will I be OK?

:O
 
Oh no , I have had this worry before about possible doubling up.
I was fine but keep an eye out for strange symptoms and obviously phone the doctor if you do have anything odd.
 
Starting imuran today. Finally got the results to both of my blood tests in. My inflammation was highly elevated according to the blood tests. Nurse started listing off numbers. Like one was supposed to be lower than 0.5 and I was a 7 and the other was supposed to be in a range with the highest 15 and I was like a 26
Or something like that.
 
Welcome to that!
My husband started it because of his fistula, also on Remicade - now after a week having nausea, headache, sure is scary, hopefully it at least works, his fistula has been draining since September and sure hope this is the answer, otherwise another surgery.
 
I've been on imuran since half of Tuesday. At first I was a little loopy. Now Loopyness is gone. Nausea in the morning. And I haven't gotten better or worse yet. It's frustrating.
 
Hi , On thursday my doctor upped my dose of aza for 50mg daily to 100mg daily. Right now my body feels sore -kinda like when you have the flu and I am so tired. I could have slept all day.
 
I didn't have that when I started. I've had back pain all along in my lower back because it radiates to my back. So that wasn't anything new. I'm on 200mg a day
 
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