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Imuran/Azathioprine/6-MP Support Group

CrohnsChicago

Super Moderator
Yes, prednisone messed with my cycle too and made me a very nasty hormonal lady during that time too (which I normally never was). Switching around birth control like you stated you have been doing can sometimes take a toll on your body as well. Just some things to think about and discuss with your GI and gynocologist/fertility doctors if you haven't already.
 
I was only on prednisone for 6 months like 4 years ago so hopefully that isn't it. The switching of the birth control happened right before i quit taking it. They switched it two times in like 6 months. I've tried ovulation tests but i'm thinking it doesn't work with the meds and vitamins i am taking. One test said i was ovulating every day i took it and the other so far is saying i'm not ovulating at all. I bought a basal thermometer today. I'm going to try the ovulation calander. Hopefully that one work better for me.
 
Looks like my doctor is going to start me on Aza when i see him again next month. Haven't been taking anything since i finished steroids in Jan as things seemed to have settled and he wanted to see how i did without anything. Now slightly anemic and the results of my last stool sample is raised indicating that i have ongoing inflammation. Bit nervous about side effects but cant be as bad as pred :lol:
 
During my colonoscopy today I had several inflammatory polups removed and biopsied. Should have results by Friday. Will try to start him on Humira when I see doc in a week to 10 days. If that doesn't work, I will need a slight bowel resection, but probably will not require a colonostomy unless damage gets worse. And the doc didn't give me any more pain meds. So once I'm out I'm out. Which will be the next couple days. I'll stop before I run run out just in case I need one for a rainy day. But being off is going to be rough...
 
Hi Everyone,
I've been on Azathioprine for 5 years now. My husband and I have been trying to get pregnant for 9 months now with no success. I was wondering if anyone else who has been on this medication has had problems getting pregnant? I am worried the radiation from getting diagnosed with Crohn's Disease and the Prednisone I was on for 6 months might be the problem. My GI doctor told me that there should be no problem with azathioprine and getting pregnant. I am just frustrated and hoping to see what I could find out from other people in my situation. I am the only female in my family with Crohn's Disease so I have no help there.
I'm sorry you are having trouble getting pregnant. That is so hard. My husband and I tried for over a year to conceive our daughter, and that was before I had Crohn's! There are so many things that can affect a woman's fertility, and throwing CD into the mix certainly makes it more complicated. I would suggest seeing a reproductive endocrinologist.
 
Thanks everyone for the comments! I will go to the ttc page. I wish you all luck. Azathioprine helped me so much, I still get flare ups every once in a while but for the most part it has helped. :)
 
Has anyone had an allergic reaction to 6-mp? I am itching so bad, and breaking out with itchy red spots all over. I have a call in to my GI's office, but wondered if this was a common reaction.
 
Has anyone had an allergic reaction to 6-mp? I am itching so bad, and breaking out with itchy red spots all over. I have a call in to my GI's office, but wondered if this was a common reaction.
Itiching is a rare side effect, I got very itchy red spots and it turned out 6mo had triggered an allergy to sun light. Although I must say this was more excruciating pain than itching.
 

Attachments

Orchid

Banned
Has anyone had an allergic reaction to 6-mp? I am itching so bad, and breaking out with itchy red spots all over. I have a call in to my GI's office, but wondered if this was a common reaction.
It's part of the rare hypersensitivity reaction, which usually goes away after a few days if you discontinue the drug. Some Case reports on it.
 
My GI doubled my 6MP, and restarted my prednisone, plus upped my sulfasalazine. I did it for 2 weeks and was SO SICK, I quit all of it Friday. I go to rheumatologist on May 6, so I'm hoping that is better. I decided it was worse being on them, than not. What do you think? I've gained 3 pounds since Friday. I'm just using pot and probiotics.
 
My GI doubled my 6MP, and restarted my prednisone, plus upped my sulfasalazine. I did it for 2 weeks and was SO SICK, I quit all of it Friday. I go to rheumatologist on May 6, so I'm hoping that is better. I decided it was worse being on them, than not. What do you think? I've gained 3 pounds since Friday. I'm just using pot and probiotics.

You're using what and probiotics...?
 
Medical marijuana. The section on our forum dedicated to it talks a lot about how beneficial the CBD in it can be to Crohn's patients.

Sorry criminal justice major...still have to get used to the fact that in some cases it is legal. I just prefer to see medical in the front of it...and in a lot of states it still is not legal.
 
Medical marijuana. The section on our forum dedicated to it talks a lot about how beneficial the CBD in it can be to Crohn's patients.
Both my GI doctor and primary care doc have suggested I try MMJ . Do you find it beneficial ? I'm about to get my card but I nervous about feeling paranoid when I use it . Have you found a strain that works best for you ?


Or maybe this reply should be to Allison M 's post . I don't know . I'm so tired but can't sleep . I'm hoping MMJ will help with my sleep troubles too.
 

theOcean

Moderator
Haha, no worries. Even where I am they're still modifying access to medical marijuana and the rules surrounding it -- and even then most doctors are reluctant to prescribe it despite all the studies surrounding Crohn's, my GI included. It can be difficult for patients sometimes who find it really helps. I use it for my sleep disorders, personally. I trust it more than I trust some of the dangerous sleep medication doctors hand out, like clonazepam. I almost OD'd on it once without knowing, and my doctor said I could have stopped breathing in my sleep and died.
 
Both my GI doctor and primary care doc have suggested I try MMJ . Do you find it beneficial ? I'm about to get my card but I nervous about feeling paranoid when I use it . Have you found a strain that works best for you ?

I would move over to the section of the forum that deals directly with this.
 

theOcean

Moderator
Both my GI doctor and primary care doc have suggested I try MMJ . Do you find it beneficial ? I'm about to get my card but I nervous about feeling paranoid when I use it . Have you found a strain that works best for you ?
I use it for sleep and have found it beneficial for that, yes. Otherwise the MMJ section of our forum is also really friendly and has a really great forum moderator who can answer questions about its effectiveness for Crohn's!

Also, if it might help with your paranoia at all: you could invest in a vaporizer so that you can stay inside when you use it, and it doesn't produce much odor. What odor there is can easily be aired out.
 
I use it for sleep and have found it beneficial for that, yes. Otherwise the MMJ section of our forum is also really friendly and has a really great forum moderator who can answer questions about its effectiveness for Crohn's!

Also, if it might help with your paranoia at all: you could invest in a vaporizer so that you can stay inside when you use it, and it doesn't produce much odor. What odor there is can easily be aired out.
Ok thank you :)
 
Hi, I've been taken off Aza now because I was losing my hair in clumps just wondering from people who this has happened to as well, how Long after you've stopped taking Aza dose your hair stop falling out.

Off Aza for about 2 weeks but my hair is still falling out :(
 

Orchid

Banned
It could honestly take a while, your hair follicles need time to replace what they lost to the drugs cytotoxic effects.
 

theOcean

Moderator
Jag23: My hair was falling out for awhile, but my GI was insistent that it wasn't from the Imuran. It absolutely was, though. I stayed on it and I think it took 5 months or so before my hair finally stopped falling out. It was incredibly frustrating, because my hair is my favourite feature. Now it's back to being super thick again.
 
theOcean, were you on any type of biologic. My dermatologist has another patient with Crohn's Disease who took Humira and her hair fell out as a result.

2
 

theOcean

Moderator
At the time I was on Remicade still, which I never had that experience with. I was allergic to it, but my reactions manifested as skin reactions (eczema, psoriasis, hives). So yes, I was on a biologic, but I don't think it was related to my hairloss at the time.
 
Thanks for the replies :)

At first my GI said it wasn't the Aza but it was because I'd been ill and said to continue but after around a month-6 weeks of the same, if not getting worse (hair loss) I rang the GI nurse who spoke to my doctor and she agreed for me to come off it.
 
Hey everybody. I started taking the prednisone 10 mg after getting diarrhea very bad again. I took the sulfasalazine too for awhile, but then I realized it wasn't doing anything more to help and I quit it again. Here I am 10 days later and I have had my 3rd better day in a row. I am not advocating anyone else to quit their meds, but that chemo made me feel horrible, and I won't take it again. Everyone's different, I know. But for me, it wasn't worth it. I go to the rheumatologist tomorrow and I don't know if I will take the biologics, but I just KNEW in my soul that I couldn't take the 6mp.
 
Hello everyone, I will be starting Imurel (azathioprine) tomorrow, first 50mg a day and building up to 200mg a day in three weeks.
A little worried, it's two months since my Crohns dx and I feel like a walking pharmacy with side effects, especially the prednison caused havoc in my body and mine. I use Pentasa (Mesalamine) and Humira, and today I was prescribed Imurel as well.

How have you all responded with vaccinations? After my childhood vaccinations I haven't been vaccinated for anything, I never liked the idea of flu vaccinations, and can't remember having flu in the last 20 years either. Would like to hear other peoples experiences with this as well!
 

theOcean

Moderator
Prednisone is the worst for side-effects, unfortunately. It's usually much better with all the other medications, I promise.

I still get flu vaccinations/any vaccines that don't contain live bacteria since I'm immunosuppressed and I don't get sick since being immunosuppressed at all.

You may feel some brainfog or lightheadedness as you get used to Imuran, but it will go away. Good luck!
 

CrohnsChicago

Super Moderator
Trust me we all know what you mean about feeling like a walking pharmacy/full of side effects. All of these treatments even alternative ones are so trial and error and things we have to put up with to try and get well...oy! :p

I still get flu vaccinations and in fact my doctors encourage it because it will make me less likely to contract the flu (hopefully) since this medication lowers your immune system defenses a bit. I personally have avoided any significant illnesses since starting 6-mp and I have been on it for a year now. I just make sure I am careful around those who are ill, drink plenty of fluids and get plenty of rest if I ever feel that I am at risk. With regards to cold/flu OTC meds I have asked my GI about this stuff and he is okay with me using them in moderation (I naturally avoid OTC meds for as long as possible but will use them if I absolutely have to to gain some peace and comfort).

You are now being combined with two medications that weaken your immune system (Humira and Imuran). My main suggestion to you would be to make sure you are taking good care of yourself on these meds. You don't have to live inside a plastic bubble but do try to make efforts to avoid illness whenever possible. Keep your doctor appointments, get your routine bloodwork done as well as your TPMT levels checked regularly and make sure your doctor is informed of any changes in your body while taking this medication.

As far as side effects go this medication is the one that has brought me the least (overt) side effects. The only thing I have had to manage with is some temporary nausea but it went away after a few weeks. The Humira will give you far more side effects than Imuran will but you still need to keep up with your blood work to avoid liver and pancreas complications.

This medication has brought comfort and remission to a lot of people and I hope that it is able to do the same for you. Wishing you good luck!

Hello everyone, I will be starting Imurel (azathioprine) tomorrow, first 50mg a day and building up to 200mg a day in three weeks.
A little worried, it's two months since my Crohns dx and I feel like a walking pharmacy with side effects, especially the prednison caused havoc in my body and mine. I use Pentasa (Mesalamine) and Humira, and today I was prescribed Imurel as well.

How have you all responded with vaccinations? After my childhood vaccinations I haven't been vaccinated for anything, I never liked the idea of flu vaccinations, and can't remember having flu in the last 20 years either. Would like to hear other peoples experiences with this as well!
 
Fortunately I'm on a taper for the prednison, only 6-8 weeks to go on low doses!
But the depression, moodswings and weirdnes are still in my body!

That makes me suspicious of other medicins.. Guess I'll just have to discuss it with my GP. She is normally very good at telling why things need to be done.
 
...I'd much rather deal with depression and moodswings then severe pain and weightloss. I'm on 1000mg/day of pentasa. I don't notice it helping at all. The 40mg/day of pred though is my savior. I'm currently going through the insurance hurtles and runaround a trying to get on humira...because when the doc tried to ween me off beginning of the year i reflared and then went on imuran which tanked my immune system and I ended up in the hospital for week. The Percocet and morphine was fun while it lasted though.
 
Good to hear your positive experiences .. There are not so many people around me that have experience in this area and my GI sounds very convincing, but the white clothes make him a bit scary to doubt!

My biggest problem is the swineflu vaccination, since so many people have responded with narcolepsi, an illness which goes in our family anyway.... So will discuss that one especially.

Getting ready to get my new meds from the pharmacy tomorrow. I reached my limit of my own contributions, so the state will pay the rest of both treatment, docters and phamaceuticals. Norway is a good place to live for people with chronic illnesses!
 
Hello everyone,
I was wondering if any one has had any problems with a low albumin/liver issues while on azathioprine. Ive been on it nearly 2 years now and just started infliximab.

At my last consultation my doctor my albumin had been creeping down and is now not in the normal range -low levels. Ive been getting intermittent right sided under the rib cage pain and I'm wondering if its something i should contact my doctor about or is it a common occurrence?

Thank you
 

hawkeye

Moderator
Staff member
Hello everyone, I will be starting Imurel (azathioprine) tomorrow, first 50mg a day and building up to 200mg a day in three weeks.
A little worried, it's two months since my Crohns dx and I feel like a walking pharmacy with side effects, especially the prednison caused havoc in my body and mine. I use Pentasa (Mesalamine) and Humira, and today I was prescribed Imurel as well.

How have you all responded with vaccinations? After my childhood vaccinations I haven't been vaccinated for anything, I never liked the idea of flu vaccinations, and can't remember having flu in the last 20 years either. Would like to hear other peoples experiences with this as well!
I was on Imuran from 1991 until recent resection (may be going back on it after my GI follow up as a maintenance med.) at various doses 75 mg/day for years and 150 mg/day for the past couple of years with no side effects.

I have made a point of getting a flu shot for the majority of that time. I think the flu shots are a good thing to do regardless if you are on Imuran or not.

I haven't really noticed that I had more colds or infections while being on Imuran.
 
I have not be on the forum for while, but my question is. I am remission and had confirm my scope. The last couple weeks, I have notice pain in the area where crohns was locate also stools have got loose. I was told my IBD Nurse said I could have IBS for year. Increase joint and nerve pain.

Does anyone else have same issues?
 
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So I've tried Ariz and then 6MP in the last couple of months. I found them to be absolutely horrible drugs, even anti sickness pills didn't help me so I have stopped now.

I noticed no improvement in crohns, if anything it was causing me more irritation and loose bowel movements than usual. Not to mention, constant fatigue, a poisonous bitter taste in my mouth and general 'brainmush' I just haven't felt myself at all.

Ive decided to listen to my body and stop taking any immunosuppressants. My questions is, what are the alternatives? I havent had a flare up since January now and that was due to just watching my diet. This stuff was given to me to make sure no problems reoccur, but all it has done is make my life a misery
 

theOcean

Moderator
I have not be on the forum for while, but my question is. I am remission and had confirm my scope. The last couple weeks, I have notice pain in the area where crohns was locate also stools have got loose. I was told my IBD Nurse said I could have IBS for year. Increase joint and nerve pain.

Does anyone else have same issues?
It's possible to have IBS and IBD unfortunately, but that it's accompanied by joint pain strikes me more as your IBD bothering you, and you should tell her that.

Nerve pain can be a side-effect of your immunosuppressant and you should tell your GI immediately as it can cause permanent nerve damage.
 

theOcean

Moderator
So I've tried Ariz and then 6MP in the last couple of months. I found them to be absolutely horrible drugs, even anti sickness pills didn't help me so I have stopped now.

I noticed no improvement in crohns, if anything it was causing me more irritation and loose bowel movements than usual. Not to mention, constant fatigue, a poisonous bitter taste in my mouth and general 'brainmush' I just haven't felt myself at all.

Ive decided to listen to my body and stop taking any immunosuppressants. My questions is, what are the alternatives? I havent had a flare up since January now and that was due to just watching my diet. This stuff was given to me to make sure no problems reoccur, but all it has done is make my life a misery
They both take about three months to get to a therapeutic level, so if you didn't make it to that point it's likely you wouldn't notice a difference. That you're reporting brainfog/fatigue is pretty standard for people first starting the medication -- usually it goes away, but if it didn't for you after a week or so you were right to stop the medication.

Methotrexate is another immunosuppressant that you haven't tried yet (and should be taken accompanied by folic acid), but otherwise it seems that you have to step-up to biologics as the next form of treatment, like Remicade and Humira.
 
It's possible to have IBS and IBD unfortunately, but that it's accompanied by joint pain strikes me more as your IBD bothering you, and you should tell her that.

Nerve pain can be a side-effect of your immunosuppressant and you should tell your GI immediately as it can cause permanent nerve damage.
Thank you, today receive letter for GI appt on 2nd of June, GP has also said to tell my Consultant recent issues with joints and nerves.
 
My liver numbers were up and recent CT revealed a fistula to appendicitis. I was so scared to have to start Imuran and now wish I could stay on it instead of going on to Humira :(
 

theOcean

Moderator
My liver numbers were up and recent CT revealed a fistula to appendicitis. I was so scared to have to start Imuran and now wish I could stay on it instead of going on to Humira :(

Oh no! You could actually be on both -- they're both good for treating fistulas, as long as you don't get too immunosuppressed.

We also have a section on our forum for fistulas! I'm one of the mods there and have one myself if you have any questions.
 
Thanks theOcean, I'm searching for it now (on my phone, might have to try on computer).
He said he didn't want to combine now due to a risk of a certain kind of lymphoma...?
 

theOcean

Moderator
Thanks theOcean, I'm searching for it now (on my phone, might have to try on computer).
He said he didn't want to combine now due to a risk of a certain kind of lymphoma...?

That's a risk even just with Imuran, it's just slightly increased if you do a combination treatment but it's still very low and men are more likely to get it than we are. I've done it without any problems. I'm also on Humira.
 
Thanks theOcean, I'm searching for it now (on my phone, might have to try on computer).
He said he didn't want to combine now due to a risk of a certain kind of lymphoma...?
I'm on both Humira and Imuran, and that is quite a normal combination, which seems to work well for many people. But this is Northern Europe, and protocols are different here from the rest of the world.
 
I am doing my research as it looks like once again we are adding/switching medications. The latest GI appointment is heading us down the Imuran path, dropping Humira, and staying with methotrexate just long enough for the Imuran to kick in. I know my kid's Crohn's path has been a bit unique, but I am wondering if anyone has done this step down before and/or what's the biggest annoyance with Imuran?

FYI, the only reason we are stepping down is because the 2 biologics approved in our area for kids have now been tried to no avail (pending confirmation from bloodwork). As you can see from my signature, we have tried a lot. Now I want to know what the daily struggle with a new medicine might be.
 
Hi, I got a follow up letter from my consultant today that said 'it is relevant to note that she is a TPMT carrier'
Can anyone explain what that means?
Thanks x
 

theOcean

Moderator
You're checked for TPMT before you're allowed to go on immunosuppressants. There's an article about it here.

Defects in the TPMT gene leads to decreased methylation and decreased inactivation of 6MP leading to enhanced bone marrow toxicity which may cause myelosuppression, anemia, bleeding tendency, leukopenia & infection.
Basically you have to be very careful, and I'm not sure if they'll allow you on immunosuppressants.
 

theOcean

Moderator
Yeah, prednisone is terrible. :( In the future because of the TPMT, it might be better to go on entocort instead -- it's milder, but also has less side-effects. So you might prefer that anyway.

Otherwise, you're most likely going to be put on a 5-ASA if you're not able to go on immunosuppressants/biologics. They function as anti-inflammatories, and are generally the first medication most people are put on.
 
Okay i think it will suggest entocort next time and ASA, does that include asacol? Because i was on that taking 6x800mg a day and at the my last appointment with the consultant he took me off them and put me on pred suppositories.
 
Being extremely intolerable to imuran i have been told I will be trying 6MP, is this easier to tolerate than aza/imuran? I had severe flu, stomach pain and joint ache side effects with imuran and i am quite concerned to try other drugs.
 
Should I be concerned? I started my first dose of imuran last night with dinner. I had a hard time getting up this morning and feel so exhausted today I'm not able to do much of anything. And now have cramping and diarrhea (worse than normal).

From reading, these seem to be common side effects, though I didn't think it would be bad after only first dose. I expect to have some issues and don't want to give up before giving it a chance to work; but if this continues, I can forget about going to work next week.

Any advise would be much appreciated.
 
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Should I be concerned? I started my first dose of imuran last night with dinner. I had a hard time getting up this morning and feel so exhausted today I'm not able to do much of anything. And now have cramping and diarrhea (worse than normal).

From reading, these seem to be common side effects, though I didn't think it would be bad after only first dose. I expect to have some issues and don't want to give up before giving it a chance to work; but if this continues, I can forget about going to work next week.

Any advise would be much appreciated.
Did you start on a high dose?
 
Can you call your GI and ask? Mine said to call him if I had side effects, so we could decide together what to do.
It's not another illness that came up right now (people around you being sick etc..)
 
I think I'll try one more dose tonight and then call him if I'm no better tomorrow. I'm just not sure it's the imuran. I wouldn't think one dose can do this.

I have been a little fatigued as of late but this is pretty dramatic. As far as being around folks that are sick...yes, unfortunately, I work in healthcare, so I'm subjected all the time to people who are carrying around something. Ugh!

Thanks for the suggestion.
 

theOcean

Moderator
I found that I got hit pretty hard with brainfog and fatigue the first week I was on Imuran, but it cleared up after that. Maybe your body still needs some time to adjust? It does sound like a good idea to contact the GI though.
 
Thanks theOcean,
Did you also experience the fatigue immediately? like within a day of your first dose?
Just seems awfully quick but I'm willing to stick it out with hopes of it going away with potential crohns remission. If it continues though, I will definitely call GI doc tomorrow.
 
Hi, i know this is going to make me sound bad but any advise would be great..
I believe my consultant it going to put me on aza tomorrow and im concerned about the side effect but in particular the hair loss! I know there are others that i should be more worried about but since being on other drugs the thing that gets me down the most is how much my appearance has changed! Got a massive round face, hair growth, put on a lot of weight and have got horrible stretch marks! Im not sure i could cope with hair loss as well!
If this does happen am i able to come off it straight away or do you have to taper like the pred?
Also im a tpmt carrier? Does this increase my risks?
Sorry its so long and that i probably sound really vein:/ xx
 

theOcean

Moderator
Hair loss is a totally valid thing to be concerned about! I got hair loss on Azathioprine up until about four/five months, and had to reduce to 50mg. Any higher than that and it would return. And this does happen straight away, unfortunately.

As a TPMT carrier you are more at risk for certain illnesses. Just be careful with your health and try to be very aware of germs in public.
 
Was your hair loss a significant amount or just a little bit? If its just a little then i suppose i would carry on through until it stopped? Ah im kinda scared! I just dont want to go through all that and then it didnt work anyway! X
 
Location
,
Nastasha my daughters been on Imuran for a year and l haven't really noticed much hair loss, maybe a little but nothing to be concerned about.
 
I started imuran about 6 weeks ago and am now at my full dose of 150mg and haven't really noticed any difference in my hair thickness. I noticed more of a hair loss when I was on prednisone.
 
Hi, I'm switching from methotrexate injections to azathioprine this weekend. I was originally on mezavant when diagnosed but was hospitalized twice for pancreatitis. I'm worried it will come back....and of course the fatigue and nausea, my work is busy enough right now it would be really hard to have to miss for being sick again. Reading all the comments I guess I will stick with my plan of taking it at dinner time, I've had nausea issues before. As for the appetite and weight, I'll be happy with loosing, I gained 40lbs in a month and half from prednisone, I've been off of it for over a year and I still can't get rid of it.

To the ladies out there, I'm switching from methotrexate so my husband and I can start trying to conceive, but I'm really confused with the research I've been doing. Some say it's ok and other say it causes deformities and other issues. Any ideas??


Thanks, Samantha
 
I've been on it for about two months (hopefully stopping soon now that I've started humira) and my thinning is just like it's been with stress or post-partum before. Very thin by my temples and back. It stays thick in back though.
 

theOcean

Moderator
Hi, I'm switching from methotrexate injections to azathioprine this weekend. I was originally on mezavant when diagnosed but was hospitalized twice for pancreatitis. I'm worried it will come back....and of course the fatigue and nausea, my work is busy enough right now it would be really hard to have to miss for being sick again. Reading all the comments I guess I will stick with my plan of taking it at dinner time, I've had nausea issues before. As for the appetite and weight, I'll be happy with loosing, I gained 40lbs in a month and half from prednisone, I've been off of it for over a year and I still can't get rid of it.



To the ladies out there, I'm switching from methotrexate so my husband and I can start trying to conceive, but I'm really confused with the research I've been doing. Some say it's ok and other say it causes deformities and other issues. Any ideas??





Thanks, Samantha

I think the danger with Azathioprine is that it would lower the child's immune system as well. Biologics like Remicade or Humira are safe to be on while pregnant, though, and shouldn't affect the baby.
 

Catherine

Moderator
We have been told by our Gi that the risks of azathioprine when pregnant are higher than being on nothing but the risks are less than untreated active Crohn's disease.
 
I started on a low 50mg dose three weeks ago, upped to 100 mg two weeks ago and now 5 days on my permanent dose of 200 mg and no hair-loss so far.
 
No hair loss for me either on my 13 year career with Aza. I'm having flu or cold right now and GI told me to drop aza for few days. Next shot of Humira also scheduled on tuesday.. I haven't had problems with flu/common cold past years, just some odd infections and other annoying stuff every once in a while.
 
Hello everyone,

Just been reading through this thread. I just started Azathioprine this morning and a little worried about being on it, but more worried about untreated Crohn's or biologics. I'm also taking Pred (starting to taper) and Pentasa. I was just diagnosed last week and like a lot of you, now feeling a bit like a walking pharmacy! Never thought I would be looking into a prescription savings card. However, I'm hoping that things will start to settle a bit in the next few months and I can start to move into remission on the Azathioprine.
 
Hello everyone,

Just been reading through this thread. I just started Azathioprine this morning and a little worried about being on it, but more worried about untreated Crohn's or biologics. I'm also taking Pred (starting to taper) and Pentasa. I was just diagnosed last week and like a lot of you, now feeling a bit like a walking pharmacy! Never thought I would be looking into a prescription savings card. However, I'm hoping that things will start to settle a bit in the next few months and I can start to move into remission on the Azathioprine.
I wish you the best.

2
 

theOcean

Moderator
Hello everyone,

Just been reading through this thread. I just started Azathioprine this morning and a little worried about being on it, but more worried about untreated Crohn's or biologics. I'm also taking Pred (starting to taper) and Pentasa. I was just diagnosed last week and like a lot of you, now feeling a bit like a walking pharmacy! Never thought I would be looking into a prescription savings card. However, I'm hoping that things will start to settle a bit in the next few months and I can start to move into remission on the Azathioprine.
Good luck! Azathioprine takes about three months to get to a therapeutic level, so it's good you're on prednisone while you start. I hope it works well for you!
 
Thanks, theOcean. On day three of Aza now and still feeling pretty good. The IBD Pharmacist said I might get some flu-like symptoms in the first week, but it should pass. I had a little bit of a headache this morning, but feel good now.

Yes, my IBD Pharmacist told me it will take up to 3 months, sometimes as long as 6 to get to a therapeutic level so I will be sticking to it for a few month yet. The Prednisone has really helped, I feel like a new person on it. I have energy and motivation which I haven't had in at least a year or two. Hoping that my treatment continues to work well.
 
Thanks, theOcean. On day three of Aza now and still feeling pretty good. The IBD Pharmacist said I might get some flu-like symptoms in the first week, but it should pass. I had a little bit of a headache this morning, but feel good now.

Yes, my IBD Pharmacist told me it will take up to 3 months, sometimes as long as 6 to get to a therapeutic level so I will be sticking to it for a few month yet. The Prednisone has really helped, I feel like a new person on it. I have energy and motivation which I haven't had in at least a year or two. Hoping that my treatment continues to work well.
Beware of the prednison energy wave! It will go away together with the prednison... I'm almost at the end of my taper, and energy levels have dropped tremendously.
The only thing still hanging of side effects is my incredibly up and down mood, one moment thinking I'm on the top of the world, next biting my husbands head of.... Hoping that will go away soon as well.
Side effects to Imiran are more sleep at night (but that could be the taper from pred, as I didn't sleep much at all with that one) and yellow pee :sun:

But good to hear that the Imuran isn't doing any bad stuff on you!
 
Beware of the prednison energy wave! It will go away together with the prednison... I'm almost at the end of my taper, and energy levels have dropped tremendously!
Haha, yes. I am aware that this energy wave is most likely from the Pred (had a real restless evening yesterday where I went through the whole fridge and got rid of everything that was old or out of date. So not like me :rof:). But I figure I may as well enjoy and utilise it while it's there. I am hoping to get to the point of having some gentle, weight-baring exercise a few times a week before I taper off completely and hope that will help somewhat with keeping a good energy level up. Worth a shot at least.
 
I must be opposite to most people, being on pred has made me so tired all the time and since tapering i have been having more energy! Is that normal? x
 
Hi, I was just dx with crohn's about a month ago. . . I have a pretty long story to tell but I am looking for advice.

I have had pains in the abdominal area off and on but since they were always during very stressful time (like when I defended my thesis, looking for a new job in this economy) I just thought it was stress related and eventually it did go away and I wouldn't have an issue for years. I just recently gotten a new job (back in August) and all was well, until around November. I had been scheduling meetings with some of the companies higher ups and had to prepare so I was trying very hard to impress. About a month before the meetings, I had went out to an all you can eat sushi buffet with some friends and totally gorged myself on what I ordered as well as what they ordered. It was literally the most I have eaten in my life.

That evening, I started to get pains in my lower right quadrant of my abdomen. I really could not sit in the seated position so I went to the recliner. I thought to myself that this pain was not normal overeating pain and that if it persisted or if I did not have a BM I was going to the doctor. This was a Saturday, so on Monday I went to work like a good boy but thinking I had a partial bowel obstruction. After work I went to the urgent care and said I was there for "A partial small bowel obstruction" (from doing research I found that statement pretty much encompassed all the symptoms). The doctor had me get a abdominal xray (just a gross, regular xray) and said he did not find anything but thought that since it was sushi, he feels I may have contracted something and put me on ciprofloxacin for about a week. That made me feel better and life was good.

In the mean time, I decided to change my diet a bit. I religiously eat salads for lunch and am an avid spinner and group fitness fanatic for many years. I thought I would be kind and change to yogurt, and low fiber foods for a while. All was well until Feb 21st when the pains came back. At this time too I was experiencing arterial blood in the toilet after being constipated from my low fiber diet as well as gas pains that would wake me up at night. At this time I went to see a GI doctor and told her of my worries that maybe I could have colon cancer or some sort of hyperplasia/abscess in my small bowel since the pain was more towards the center of the gut. I asked for a CT scan since that would cover the entire small bowel and I explained to her I was diagnosed with IBS/UC when I was 19 and was put on Pentasa 4000 mg/day but took myself off when I changed my life style and basically never went back but new that this fact could increase my risk for colon cancer. She said a CT would only be granted for emergency room visits but agreed to schedule a colonoscopy/endoscopy 2 for 1. The results of that were good. She found internal hemorrhoids, which explained the bleeding, patches of erythmia throughout the colon and that was about it. She took 7 biopsies, but none from the ileum since in the report she said it was "of normal mucosa". From the biopsy results, I was diagnosed with gastritis, duodenitis, and crypitis (in the rectum). I was given hydrocortizone 25% HCL suppositories and nexium and told to have a follow up sigmoidoscopy that June (the colonoscopy was done March 14th).

A week later, the pain in my side came back and I was worried that something was missed so I phoned the office and asked that, in the meantime, I have a fecal lab done to check for parasites since this occurred after eating raw fish. At this time the amount of mucous in my stool increased and sometimes I would have to have a BM it was just a ball of mucous which has never happened to me.

I began retrieving stool samples after getting the kit but I never did finish....

That saturday I began to have pains in my groin area just above the genitals, below the belly button that would wake me up every hour. This again happened into Easter Sunday and again into that following Monday. On easter Sunday, I ate dinner and felt it wasn't passing very well. Monday I did my normal day with the gym before work, spin class after work then home to clean and then bed.

That night I was woken up again every hour with the same pains and at about 3:45 a.m. the pain shot up in level about 10 fold and it would not go away. I woke my fiance adn told her to take me to the emergency room thinking my appendix burst. About 30 m in later I had a fever of 103. I had received a CT and they found a very small abscess where I was having pain and performed percutaneous drainage removing about 2cc of purulent fluid, no catheter just a band aid. They took this and a lot of blood and cultured it up. In the mean time they put me on IV antibiotics (Vancomycin and Zosyn back and forth) and I was admitted to the ICU for observation overnight then downgraded for the remainder of the stay (7 days total). During that time I wasn't allowed to eat or drink for 5 days because of the partial obstruction. They gave me mesalamine (3000 mg/day) and antibiotics. They found the bacteria in the abscess to be clostridium, E. coli, and (I was told) pneumonacocci. The followup MRI showed no overt obstuction but marked thicking of ~15 cm of the terminal ileum.

After I was discharged I remained on mesalamine and was given augmentin, 875 mg 2x a day and that is where I have been since April 29th. Yesterday my blood labs came back and WBC were down from 15.8 on May 7 to 7.2.

I am a little confused for a couple reasons.... I have zero pain in my side. I was told to stay on a low fiber diet and I have. I eat very very well and it has gotten better each day, however, the abscess cavity remains filled with air so that is why I am still on antibiotics. My GI doctor wants to take me off mesalamine and put me on remicade and 6MP. I told her that I was very afraid of these drugs... the surgeon wants to resect the 15 cm of my bowel... no one is speaking of the abscess... I have no fistula and I feel great, I feel normal.. I am back to work but only have this worry about the abscess that is being ignored. I was told that I should at least go on 6MP and I am reluctantly agreeing because what am I going to do? Go on it and say "I feel the same!!! I feel great!!".... I don't get why that, if I am doing very well on the mesalamine, I am eating very well with zero pain, why are they so adamant on changing me over to 6MP or even resecting my small bowel?

This was my first "flare up" I think... I never had urgency issues before or now. I went to see a second opinion and he said to resect THEN put me on every crohns drug and take them off slowly. I guess I don't understand that, if I feel very well, why do they want to move on to all these drugs and not give a chance to see if the inflammation is going down over time with the mesalamine before putting me on the "upper teir" drugs, totally skipping coritcosteriods? I've never had bowel issues before this and I just feel this is a bit extreme since I am feeling so .. back to normal..

Any thoughts? Also, if I do take the 6MP will I still be able to go the gym and have my life as I want or will I be restricted.

Sorry for the long rant, I am just confused since I am feeling so well and it feels odd they are pushing these drugs though the one I am on seems to be working and I'm not sure if it's the right thing to do.

THank you for your time in advance! :redface:
 
Was your hair loss a significant amount or just a little bit? If its just a little then i suppose i would carry on through until it stopped? Ah im kinda scared! I just dont want to go through all that and then it didnt work anyway! X
This is just my personal experience, and I hate to sound scary, but my hair loss did not stop in the six months I was on 6-MP, 50 mg a day. I stopped taking it (this was last year) and went back on Humira, because I couldn't deal with the mental effects of female hair loss--people at work were harassing me, I'd get called out on the street about it, etc. Also, it wiped me out to the point where I was sleeping all day. I'd get up around 11, stay up until around 2, take a nap, get up around 5 or 6 and would be back in bed by 10. That was no way to live. And I absolutely could not work under those conditions (I was on short-term disability by then, because I wasn't getting any better).

Also, my hair grew back in completely when I stopped taking it--I took biotin and a lot of other vitamins that I think helped.

A lot of people do better on Imuran or 6-MP than I did. I seem particularly sensitive to side effects, so my experience by no means that the same would happen to anyone else who takes these meds.
 
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