Your Input Requested- Imuran Side Effects, Dosages, What Helps

[CrohnsChicago]

The possibility of starting Imuran around this holiday season is becoming more of a reality every day...needless to say I have some reservations about starting it.

I'm doing whatever is within my power to prepare (filing for FMLA, researching Imuran and side effects and treating my body as nicely as I can right now)

However, I am still a bit curious/concerned about a few things, based on what I have researched and read here, and wanted to get opinions and suggestions from you wonderful people.

Side Effects:
I tend to live a moderately active/social lifestyle and have a job which requires attendance, focus and accuracy....I noticed the trend of side effects is primarily nausea, "wobbly" feelings, headaches and extreme fatigue (which can last either a short period or the full term of treatment with Imuran)....

• What things have you tried to help reduce your nausea, wobbly feelings in the moment/for the day? Did anything help at all?

• Does non-asprin help anyone with headaches from Imuran?

• For those who experience fatigue AND are anemic or have crohn's that affects the terminal ileum, do you find iron supplements and/or B12 treatment helps with the fatigue? Any other things to combat fatigue that you could suggest (exercise, diet, etc...)?

• How frequently did you find yourself taking off of work due to side effects?

Treatment:
Right now my moderate-to-severe crohn's is not killing me...but there is some minor activity that warrants being put on Imuran now just in case it decides to turn into a full-blown flare (which can get bad for me)

• Is there anyone who managed to start Imuran WITHOUT being put on Prednisone as well for the start of the treatment?

• Can a continuous low dose (<=100mg) of Imuran be sufficient to treat moderate-to-severe crohn's? What is your experience on this?

• For those of you that split the pills in half through the day, did you consult your doctor first? What was your doctor's opinion of splitting the dosage?

:sign0085:

 

[KYGirl]

The possibility of starting Imuran around this holiday season is becoming more of a reality every day...needless to say I have some reservations about starting it.

I'm doing whatever is within my power to prepare (filing for FMLA, researching Imuran and side effects and treating my body as nicely as I can right now)

However, I am still a bit curious/concerned about a few things, based on what I have researched and read here, and wanted to get opinions and suggestions from you wonderful people.

Side Effects:
I tend to live a moderately active/social lifestyle and have a job which requires attendance, focus and accuracy....I noticed the trend of side effects is primarily nausea, "wobbly" feelings, headaches and extreme fatigue (which can last either a short period or the full term of treatment with Imuran)....

• What things have you tried to help reduce your nausea, wobbly feelings in the moment/for the day? Did anything help at all?

• Does non-asprin help anyone with headaches from Imuran?

• For those who experience fatigue AND are anemic or have crohn's that affects the terminal ileum, do you find iron supplements and/or B12 treatment helps with the fatigue? Any other things to combat fatigue that you could suggest (exercise, diet, etc...)?

• How frequently did you find yourself taking off of work due to side effects?

Treatment:
Right now my moderate-to-severe crohn's is not killing me...but there is some minor activity that warrants being put on Imuran now just in case it decides to turn into a full-blown flare (which can get bad for me)

• Is there anyone who managed to start Imuran WITHOUT being put on Prednisone as well for the start of the treatment?

• Can a continuous low dose (<=100mg) of Imuran be sufficient to treat moderate-to-severe crohn's? What is your experience on this?

• For those of you that split the pills in half through the day, did you consult your doctor first? What was your doctor's opinion of splitting the dosage?

:sign0085:

I have been on Imuran since 2003. I take 150 mg daily, all at once in the morning. I honestly have not noticed any side effects at all from this drug. I developed Rosacea not long after starting it, and I have my suspicion that it might be connected, but nothing serious. I always take it with food so it has less chance to cause nausea. I think it is really personal preference whether you split the dose or not. It is my understanding that the biggest problem you could encounter would happen very quickly, and that is pancreatitis. If you are going to have adverse reactions, you will know it quickly. It takes several weeks for Imuran levels to build up. There is a therapeutic range that you need to be in for it to work. I started at 100 mg. Prometeus labs were done pretty regularly at that time. 150 mg was the the magic number that got me into therapeutic range. I, too, read everything I could about Imuran before starting and scared myself to death. I was as anxious as you. Don't stress yourself out about it. It has not been bad at all for me. I am currently on both Imuran and Humira together. I would recommend keeping an eye on your skin and any moles you have because there is a VERY SLIGHT chance of skin cancer. Imuran has been in use for a very long time, so there is a lot of data out there. It seems to be one of the safest we can take. Hope this helps.

 

[Grumbletum]

Hey there
I'm sorry your current symptoms warrant going on Imuran and I had the same reservations that you had. I was on Pred when I started it and a lot of my wobbly feelings were due to the Pred rather than the Imuran ( Azathioprine ) cos they did disappear when I tapered off it.
Splitting the dose ( 125mg ) made a huge difference to me. They started me on 25mg, and I had to work up 25mg every two weeks. When I got above 100, I started getting waking up in the early hours of the morning with really bad head and neck pains. Paracetamol would shift them, but took a while to kick in, and though I didn't need to take time off work, I was tired from the interrupted sleep.
I started splitting the dose and the problem was solved. I went into hospital during this time and they didn't comment on me splitting it.
Something that did concern me was a sprinkling of moley looking bumps that appeared on my neck and chest shortly after starting it. My IBD nurse noticed them too and said to keep an eye on them to make sure they weren't getting bigger, which they didn't. You need to stay out of the sun took cos you do burn very easily on it.
Hope that helps

 

[Astra]

Hiya

When I got diagnosed in 2005, Aza was the med the doc gave me, I didn't have Pred with it tho.
After 6 weeks and over Christmas I became very itchy. I developed hives all over my legs and torso, they were soooo itchy. They were bleeding too. I saw my gastro after the festivities and he was shocked. The hives disappeared immediately after I stopped taking Aza.
The doc tried 6MP, and the exact same thing happened after 6 weeks.
Hopefully this won't happen to you tho.
I remember reading on here somewhere to take the Aza at nightime.
Good luck
xxx

 

[seebee]

Hi, I'm on 50mg azathioprine. I have not taken it together with prednisone so all that I have felt (for better or worse) is blamed on the azathioprine. For the first two months, I had no side effects and my inflammation markers were going down. Since then, however, I have been suffering from a lot of joint pain which my rheumatologist says is not caused by arthritis and is probably a side effect from the medication. At this point, I am trying to weigh the benefits of staying on the medication (CRP and ESR within normal range) vs the joint pains.
About the anemia - I have always been borderline and it hasn't changed.
Good luck with your decision.

 

[kh216]

I did very well with Imuran and did not have any side effects. I may have had to take time off of work to deal with Crohn's symptoms but never from Imuran. When I first started with Imuran, I was suffering from active Crohn's. It took 4 months for the Imuran to take effect so I had to be on Prednisone until the Imuran started to work. Regarding dosage, I was on 100 mg. Your dosage will depend on how effective it is for you and your blood tests. You will need to get blood tests as recommended by your doctor to make sure your liver function levels stay normal and your white blood count does not get too low. If your red blood count is low, your doctor will recommend you take iron. In fact, getting your blood tested now will determine if your weakness, nausea and fatigue are being caused by anemia. Make sure that you keep your nutrition up by eating a little at a time. This will help too.

 

[Catherine]

My daughter appears to have no side effects from aza, she takes 100mg in the morning. She has anemia but she had that before starting aza. She extremely active and trains 6 morning per week.

 

[Terranz]

I'm on azathioprine. I started on 50mg for one week then 150mg for one week and now I'm on 200mg with no determined end.
My specialist said to stop it if I got bad stomach pain but the only problem I'm having so far is terribly bad nausea with a lot of vomiting. I'm at the stage of wanting to know when/ if the nausea ever ends.
Apart from feeling horrible I don't want to miss my grandmother's christmas cooking

 

[hawkeye]

Here's my experience - hope it helps

I haven’t had any noticeable side effects that I attribute to the Imuran. I had a bit of a bout with headaches a couple of years ago (when my dose was upped to 200 mg/day) but I am not entirely convinced that it was the Imuran – it could have been a sinus infection. The headaches I was having at the time I upped my dosage was similar to a migrane so I had to use Advil Liquidgels, there is a Tylenol product that has caffeine for headache relief. I think it I available over the counter (at least here in Canada). Any headached I have now are taken care of with 500mg tylenol.

I had Iron supplements (ferrous gluconate) early on in my diagnosis in the 1990’s – they worked quite well, and gave me the energy for school work.\

I don’t have to take any time off work for side effects and have only missed 2 days of work in 14 years due to Crohn’s.

When I started Imuran I was on both prednisone and Salofalk, eventually tapering off the pred, but keeping on the Salofalk. I have been on prednisone for flares (recently over the past few years). I think that the continuous 75 mg/day dose of Imuran has kept my Crohn’s under control (the Salofalk has limited effectiveness compared to the Imuran based on a recent discussion with my GI). I have had to up the dose and am now at 150 mg/day (I am a bit heavier now as well), but I think a lot of this was due to not being followed to a GI for a few years (3) when the Crohn’s was under control. If I had it to do over again I’d push for at least an annual follow up which is the schedule I am on with my current GI not that things are under control again.

I currently split my dosage in half (75 mg taken at breakfast and supper) I mentioned this to my GI and he was OK with this approach.

 

[CrohnsChicago]

Thank you everyone for your responses and suggestions! I found them very helpful and am a bit more hopeful I have a shot at going through this treatment with minimal difficulties.

Still waiting to get the TPMT test done, insurance is giving me a hell of a time due to the cost of the medication. They don't want to have to cover the full price of it so they are making me cross all my T's and dot all my I's before they approve the test :yrolleyes:

 

[kh216]

Azathioprine is the generic form of Imuran and it is less expensive. This should make your insurance company happier.

 

[CrohnsChicago]

Sorry, I meant It's actually the TPMT test they are fussing over. It is a $400 blood test they are trying to get out of covering.

I was frustrated its been a month sice I've tried to get this done and still haven't been able to. Trying to be compliant but I'm losing my patience. Not going to start imuran without the TPMT test

 

[hawkeye]

Sorry, I meant It's actually the TPMT test they are fussing over. It is a $400 blood test they are trying to get out of covering.

I was frustrated its been a month sice I've tried to get this done and still haven't been able to. Trying to be compliant but I'm losing my patience. Not going to start imuran without the TPMT test

Wow....$400 for a blood test, maybe I am a bit out of touch with costs due to our Canadian health care system. Is this a specialized test?

 

[CrohnsChicago]

Yes, it's a specialized test.

TMPT test is an enzime blood test to help determine how well you will metabolize/process thiopurine. Imuran is a thiopurine medication and has it's own set of risks (as does all crohn's medication). I personally wouldn't even consider starting to take Imuran without this blood test having been done first.

Wow....$400 for a blood test, maybe I am a bit out of touch with costs due to our Canadian health care system. Is this a specialized test?

 

[Terranz]

I'm on my 4th week of this horrible stuff. Maybe I should mention this test to my specialist

 

[hawkeye]

I'll have to ask about the test the next time I see my GI. Keep us posted as to how it is going.

 

[Catherine]

I would ask about the test. Sarah had the test after starting aza as it was not order either.