Skin cancer from Azathioprine

[Pug Gamer]

Hey everyone, so I was originally on entocort for my crohns. But it didn't stop the obstructions and so was put on 150mg daily of azathioprine for around 3 years now. I have been in remission ever since, I also have alot of other illnesses (don't we all!) And have found it hard knowing if some problems have been side effects, reactions or illnesses. But I've been happy on it so far.. until recently!
I noticed what I thought was a chicken pox mark I've had since I was a child, had grown a whole mole like section around it. Which was alot larger, flatter and darker/multi coloured than the original little bump.
Long story short, they are pretty sure it's cancerous sun damage with a tumour under it. So are doing a removal and biopsy soon. The legal 2 week emergency cancer referral has in total taken 2 months thanks to PALS getting involved and a 5 month wait for biopsy went down to 4 weeks. But atleast in a few weeks it'll be done and have definite answers.
Now it is definite this is caused by azathioprine, and they want the results back before my gastroenterologist has my appointment in September so he can possibly take me off aza and put me on biologics.
This scares me so much, has anyone had this situation? And in the change over, will I flare and get obstructions again? I don't know if I could take it again. Also has anyone stayed on aza after it has caused cancer?
Before I wanted to go straight from steroids to biologics but wasn't allowed due to funding on nhs (has to try everything first before they'll even allow my team to apply for funding to get on biologics). And could I still have this happen again on biologics? For reference my nan has had 7 skin cancers and I am very fare skinned. I do not sunbathe and always cover up. My sun damage is on my outer thigh where it is always covered by 1 or 2 layers of clothing.
I feel so conflicted and have already had huge fights on my hands getting my appointments even on the cancer referral. So I'm just really hoping this can be removed, maybe precancer at worst and nothing to worry about. But I know that's being very hopeful.

 

[westernbuddy]

I hope you get a reply from someone on here that has been though this and can give you some re assurance.

Having crohns is bad enough we do not want more issues.


Kinda does make me angry with doctors and medicine, azathioprine is toxic, its In the same class as asbestos, everyone gets skin cancer from this drug, the one very good bit of news in almost all cases its non melemonoma and non fatal.

Will prey with my energy that they zip it of and sort it fast for you.

Crohns cancer and coronavirus, we need one more word CURE

Treatment and diagnosis is improving, knowledge is becoming more.

 

[my little penguin]

Changing between aza and biologics shouldn’t cause a flare unless your in one
That said depends on the biologic taken
I think in the uk your options are just remicade /humira which have to be failed before entyvio is tried and no access to Stelara

my kiddo switched from 6-mp (sister drug to aza ) 9 years ago -they no longer use 6-mp or aza in crohns kids due to lymphoma risk
Only methotrexate and biologics
he switched from 6-mp to mtx then remicade
He was flaring when he switched to remicade since mtx by itself wasn’t enough
But once he started remicade
He drastically improved
He has been on biologics for over 9 years
He currently takes Stelara (since 2017) with mtx


no issues
I do know of another parent whose child had some type of cancer (not skin ) who went on Stelara many years ago
So assume that was ok since they haven’t gone back

Good luck

 

[Pug Gamer]

Thank you both for your replies. It really does help me in more ways than I can explain in words. For one this has solidified in my mind that if I do get the chance to get off of aza, I will! I did read somewhere that it's very normal for cancers (mainly skin cancers) on aza. But staying on it with the NHS is just not safe considering my experience so far. And what next, fingers crossed this is dealt with, but what if I rolled the dice again and I got lymphoma.! I have a family member pass of that, and I would never want to go through what he did (and he was bupa). So I will jump at the chance to swap. I wonder if in the future they will ban azathioprine in crohns patients in the UK due to these high chances of cancer.
It is scary as I worry I'm going from something that works really well, to something that won't. But I've decided it's worth the risk. Thank you both as it has put my mind at rest that I shouldn't go into flare, and if I do, I'll be ready for the fight. I know remicade etc will have side effects, but it will be interesting to see what aza is giving me, and what is my myriad of illnesses worsening. I suspect aza is making my brain fog alot worse, possibly even the headaches. Well see and I'll try to update when this is all over (May be a long time).

 

[Guerrero]

I think overall biologics are a much better option than azathioprin in terms of results, risks and side effects

 

[westernbuddy]

As azathioprine combined with remicade aka infliximab is the proven best drug combo in terms of crohns treatment I can't see azathioprine going anywhere soon.

Azathioprine is used in a lot of problems also.

However i would like to think, crohns treatment will get better, if they can narrow down the trigger then maybe azathioprine and even remicade will no longer be used.

I truly belive there are some great clairvoyants psychics and mediums out there.

Some psychic readings I have heard some people have are unbelievable, however most people ask about love life and wealth.

What would be interesting is to know if there is some good psychic or clairvoyant that can get the trigger.

May sound mad to some but science isn't finding the trigger yet.

 

[my little penguin]

@westernbuddy
They do NOT use aza plus remicade anymore in kids at all
That increases the risk of fatal t-cell lymphoma
They use methotrexate and remicade which has an excellent record in crohns and does not carry the T cell lymphoma risk

 

[westernbuddy]

Sure i get that and we have to be thankful that the younger genration has this additional avenue or opportunity.

However as far as i can gather in the adult population its not used due to alcohol risk, in the uk azathioprine is favored over methotrexate due to the concerns methotrexate has on the liver, Doctors in the uk would presume an 18-30 year old not being able to drink from time to time at weddings birthdays or even as a uni student e.t.c would be bad for mental health, and the young adult would also be highly tempted to drink alchol and as there is no control over how much alcohol the young adult may have so azathioprine is considered safer for 18+ year old.

Me personally i cant eat and drink alcohol together, have to wait maybe 6 hours after eating, But maybe depending on whats heppening in life i will drink from 10-20 times per year, and as i dont drink often these are really let lose, go crazy moments and some great times.

Jack Daniels i find the safest alcohol to consume crohns wise diluted with coke or lemonade.

 

[my little penguin]

It is young males
Teenagers and young adults not little kids who are at risk

 

[westernbuddy]

Problem is this medication alters the defence against skin cancer by 90% it also alters the dna so even after stopping the effects of this drug remain, so anyone can get skin cancer yes, but somone who takes this med is 90% more than likely to get it than a normal person over there lifetime. plenty of studies and records about now with this data.

 

[Pug Gamer]

I apologise for such a late reply. I ended up having the biopsy done. It ended up being a larger tumour than they thought. I now have a pretty decent sized scar, a tumour gone and a very relieved me! It turned out to be a mole that mimics the worst skin cancers, but infact is perfectly safe and not cancerous. They said it is caused by azathioprine, but as they know I have that, they will no longer biopsy moles as I can have these turn up anywhere now.
But It was 6 weeks recovery, 11 stitches outside and some disposable inside. The tumour was a big bunch of benign cells thankfully. So after all of this I ended up staying on azathioprine without a choice either way.
I am really thankful to everyone that has replied, it really did help as I was so stressed and worried. It actually took a while for that to go away and stop being bloated etc from it. Amazing how our body reacts when you feel your dealing with it well!
I'm still in the camp of get off azathioprine when I can, but until I get a choice, I'll have to stay on it and Continue rolling the dice unfortunately.
I hope it helps anyone who also may go through this, as my specialist is so blazee about everything, it just makes me feel quite alone sometimes. I've found so much from this forum and a good old Google. Infact I still would be living a depressing lactose free life struggling to pay for free from foods and find nice tasting stuff if it wasn't for this forum and google saying about lactase enzyme! So thank you all!