Before I start Azathioprine - Are there any alternatives?

[ImDan]

Hi,

I'm from the UK and been told that Azathioprine is my only option for medication here.

I feel a little hesitant committing to a 3-5 year treatment course with such high maintenance and wondering if there's any other options? Even if our healthcare doesn't cover it I could look into funding it myself if it's not too expensive - I find both the perception of Azathioprine and unmedicated both scary.


Is it true you need a weekly blood test for however long you're on it (e.g. 5 years). And then how do you know when it's safe to stop taking it - especially since I seem to be a-symptomatic.
The weekly blood test would test for bone marrow, liver, pancreatitis, lymphoma and melanoma cancers.

Would appreciate any advice,
Thanks

 

[Catherine]

Blood tests for azathioprine. Weekly bloods for six weeks, then fortnight until 3 months, then monthly until 6 months into treatment.

My DD is now gave blood tests every 3 months. She has been on azathioprine for 4 years.

 

[Agent X20]

I'm just tapering off aza after about 7 years.
You need weekly blood tests for about the first month, then you normally go on to a blood test every three months.
I think the potential side effects are "one size fits all", so they may relate to patients with other conditions who are on a much higher dose, but they still have to report them.
Some people have a reaction to the drug, so they have to come straight off, but I didn't.
As with anything you have to balance the risks against the benefits.
I had seven years of pretty good health... and so far I've felt fine whilst tapering off. I don't know how you tell it's ok to come off... in my case I think it was because my consultant was leaving and he thought if anything horrible happened then his successor would have to sort it out. That's not meant to be a joke, it's my honest assessment.
I'm not going to say definitely take it or not, but consider:
How bad do you feel now, is the crohns affecting your day to day life?
No harm in trying (in my opinion), if you have an instant reaction you'll have to come off anyway.
Cheers
SJ

 

[Ian_H]

I had weekly blood tests the 1st month, then every 3 months for a year and now 2 times a year. I have been on it for years and have had no problems if that helps you feel better! But if you react badly they will just take you off. If it helps in the long run it may be a good option. Best of luck,

Ian

 

[ImDan]

I'm just tapering off aza after about 7 years.
You need weekly blood tests for about the first month, then you normally go on to a blood test every three months.
I think the potential side effects are "one size fits all", so they may relate to patients with other conditions who are on a much higher dose, but they still have to report them.
Some people have a reaction to the drug, so they have to come straight off, but I didn't.
As with anything you have to balance the risks against the benefits.
I had seven years of pretty good health... and so far I've felt fine whilst tapering off. I don't know how you tell it's ok to come off... in my case I think it was because my consultant was leaving and he thought if anything horrible happened then his successor would have to sort it out. That's not meant to be a joke, it's my honest assessment.
I'm not going to say definitely take it or not, but consider:
How bad do you feel now, is the crohns affecting your day to day life?
No harm in trying (in my opinion), if you have an instant reaction you'll have to come off anyway.
Cheers
SJ

Crohn's fortunately hasn't affected my life at all. I have been completely symptomless. However it does mean that I have no idea when I'm flaring or in remission.

My GI also mentioned it makes your skin photo sensitive and it's highly increases your chances of cancer. Do you guys have to avoid the sun completely? Can you still sunbathe or go to the beach with lots of suncream or does using this drug cut out any chance of being in the sun?

 

[Scipio]

" Can you still sunbathe or go to the beach with lots of suncream or does using this drug cut out any chance of being in the sun?"

Sunbathing and other forms of UV light exposure (i.e. tanning beds) are pretty harmful even when not on azathioprine. When on photosensitizing drugs they should be completely out of the question, IMO.

The sunscreen creams are useful but should be used primarily as a back-up measure on exposed skin (e.g. face and hands) only when sun exposure is unavoidable and not as an attempt to enable potentially harmful sunbathing.

 

[ronroush7]

I have been on it for several years. My blood is checked every few months. At one point they had to cut the dosage in half.

 

[ImDan]

Do you guys know of any other drugs that are worth a try - maybe a little lower maintenance where you don't have to avoid the sun? Especially if I'm going to be working in a sunny country.

Basically I've only been on Pentasa and a short course of budesonide until now - so looking for that first long-term medication.

 

[DEmberton]

Is Pentasa/5-ASA not a long term treatment? I thought it was a step down from Aza.

I put off starting Aza a few months ago after the consultant said it wasn't black and white whether I needed it or not; I need to decide whether I want to start it next time I see him. On the days where I do get some symptoms I think I should, but all the times that I feel more or less okay I think I don't want to poison myself and risk side effects if I don't absolutely need to.

I just wish I knew for certain whether it would make me feel better or worse overall.

 

[my little penguin]

Pentasa /5-Asa is NOT approved as a monotherapy for crohns for a reason .
It only helps the top layer of the intestine and crohns affects all of the layers.
Most Gi equate it to giving aspirin for a brain tumor . Not going to help too much but not going to hurt too much either.

Honestly Aza has minimal involvement except a few extra blood draws
Otherwise your looking at biologics which for remicade requires 4 hours every 6-8 weeks for infusions
Or humira which you can inject at home
Both still require blood work every three months to monitor things
Cancer risks increase more for lymphoma with 6-mp /Aza
Other risks are there with biologics but less lymphoma risk

Unchecked inflammation alone is a risk for cancer

In the end it's typically not a choice
Since whatever drug keeps your intestine in remission is the one to go with
Ds has been on them all and in the beginning I couldn't even think of letting him take pentasa
Now almost 5 years later his gut looks great on humira plus Mtx but it took a long time to get to this point and be somewhat ok with it .

As far as sun exsposure - Ds wears big wide brimmed hats /long sleeve "surf" shirts/scuba thin hoods and pure zinc oxide on his face while at the beach- avoiding high sun times
No sunburns that way

 

[ImDan]

Pentasa /5-Asa is NOT approved as a monotherapy for crohns for a reason .
It only helps the top layer of the intestine and crohns affects all of the layers.
Most Gi equate it to giving aspirin for a brain tumor . Not going to help too much but not going to hurt too much either.

Honestly Aza has minimal involvement except a few extra blood draws
Otherwise your looking at biologics which for remicade requires 4 hours every 6-8 weeks for infusions
Or humira which you can inject at home
Both still require blood work every three months to monitor things
Cancer risks increase more for lymphoma with 6-mp /Aza
Other risks are there with biologics but less lymphoma risk

Unchecked inflammation alone is a risk for cancer

In the end it's typically not a choice
Since whatever drug keeps your intestine in remission is the one to go with
Ds has been on them all and in the beginning I couldn't even think of letting him take pentasa
Now almost 5 years later his gut looks great on humira plus Mtx but it took a long time to get to this point and be somewhat ok with it .

As far as sun exsposure - Ds wears big wide brimmed hats /long sleeve "surf" shirts/scuba thin hoods and pure zinc oxide on his face while at the beach- avoiding high sun times
No sunburns that way

Thanks for all the information. Is that really the only options though? Basically pentasa level drugs - then Aza - then Biologic injections are the next step up?

I wish there was something a little lower maintenance.. Or at least didn't give photosensitive skin that sounds really miserable

Emberton - I can see you're from the UK and getting alot of the same information I have been getting. From doing my own reading here (and as penguin pointed out) the US seem so much more informed on how to actually treat the disease rather than most UK GIs that just patch symptoms.

Ron - What dosage are you on if you don't mind me asking? My GI said I would be starting on 100mgs a day

 

[KayleighMeek]

Unfortunatley there aren't many other medication choices as a step up it would be aza/6mp or methotrexate.
The US and UK healthcare is very different because ours is free you usually fail the cheaper options before moving up the ladder so to go on to biological you had to have failed another couple of treatments, or at least that's the way it was last time I had to go through it all. I think opinion is starting to change though as the cost of a hospital stay/surgery outweighs the cost of medication.
It's always a worry starting a new medication especially when the Drs go through the list of risks but a lot of the time the med just slots into life easily and you just need a few more blood tests. I hope you can find something that can work for you but sorry I don't have any other suggestions apart from what has already been said.

 

[ImDan]

Unfortunatley there aren't many other medication choices as a step up it would be aza/6mp or methotrexate.
The US and UK healthcare is very different because ours is free you usually fail the cheaper options before moving up the ladder so to go on to biological you had to have failed another couple of treatments, or at least that's the way it was last time I had to go through it all. I think opinion is starting to change though as the cost of a hospital stay/surgery outweighs the cost of medication.
It's always a worry starting a new medication especially when the Drs go through the list of risks but a lot of the time the med just slots into life easily and you just need a few more blood tests. I hope you can find something that can work for you but sorry I don't have any other suggestions apart from what has already been said.

Thank you for those extra medication names. I will look into those.

I've heard that in the UK even if they give you biologic injections. They only give you them for a very short period of time because of budgets. Which is actually really bad for you - because stopping and starting it makes your body react badly when you stop and you can also build a resistance to it so next time you need to use it - it won't be as effective.

I don't mind the blood tests so much as being photosensitive. I'd really like to avoid that if possible.

 

[KayleighMeek]

There are exceptions to being taken of biologics I haven't been taken off one yet only when they stopped working. Your Drs have to appeal to keep you on it or show you still have active inflammation which is stupid really as the drugs will stop the inflammation until you are taken off. I'm on methotrexate at the minute and it has its own annoying side effects but for me it's better than the alternative.

 

[DEmberton]

Emberton - I can see you're from the UK and getting alot of the same information I have been getting. From doing my own reading here (and as penguin pointed out) the US seem so much more informed on how to actually treat the disease rather than most UK GIs that just patch symptoms.

There was a recent thread here about US doctors preferring a "top down" approach: i.e. starting with the more powerful drugs and then reducing down, and UK doctors preferring a "bottom up" approach: starting with the lesser (cheaper) drugs and moving you onto more powerful things if necessary. It's probably about the funding as much as anything; here they're always under pressure to save money, whereas in the US they're more motivated by making a profit. I don't think either is really in the best interest of the patient.

One thing I've never quite understood is that if you take it for 5 or 6 years, what happens then? Are you "cured"? Probably not; your immune system is still likely to play up in the future. If Aza gives you 5 or 6 good years and then it gets worse again, maybe it's better to put off starting it as long as possible.

 

[Scipio]

With current therapies no one ever gets "cured" of Crohn's. A true cure has not been found. The best that can be achieved is to find some therapy that keeps it at bay for the long term.

After several years on a biologic (top down) what often happens is that the biologic stops working and the symptoms return. That is usually addressed by boosting the dose, adding an immunosuppressant, or switching to another biologic - one of the newer ones like Entyvio. Or some combination of those steps (although they do not give two different biologics at the same time).

After several years on azathioprine what sometimes happens is not so much that it stops working but that the side effects get too bad. The blood tests start to come back with alarming values. The liver is getting stressed, or the bone marrow function is way down, or risk of cancer is increasing. What happens then is often the patient is moved to a stronger drug (bottom up) such as methotrexate or a biologic.

 

[ImDan]

I'm just tapering off aza after about 7 years.
You need weekly blood tests for about the first month, then you normally go on to a blood test every three months.
I think the potential side effects are "one size fits all", so they may relate to patients with other conditions who are on a much higher dose, but they still have to report them.
Some people have a reaction to the drug, so they have to come straight off, but I didn't.
As with anything you have to balance the risks against the benefits.
I had seven years of pretty good health... and so far I've felt fine whilst tapering off. I don't know how you tell it's ok to come off... in my case I think it was because my consultant was leaving and he thought if anything horrible happened then his successor would have to sort it out. That's not meant to be a joke, it's my honest assessment.
I'm not going to say definitely take it or not, but consider:
How bad do you feel now, is the crohns affecting your day to day life?
No harm in trying (in my opinion), if you have an instant reaction you'll have to come off anyway.
Cheers
SJ

Hey Steve,

I was curious to ask why you're coming of the Aza if it's been successful for 7 years ?

Are you stepping up to a biologic next?