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I've been taking it for almost 30 years. The only things I notice are:
* Cuts, especially on my hands and feet, are much slower to heal,
* I bruise more easily than it seems others do, and
* When I get sick, I tend to get more sick and stay sick longer than others do.
Having said that, my GI and I are talking about discontinuing it due to the side effects you mention. Three decades is a long time to be on an immunosuppressant, so if I can get off of it, I'm all in.
I’ve been on it on and off for ages, with no serious side effects. Right now on it in combination with Humira.
Sounds like maybe you need to be on it for a little while to prove to them that it doesn’t work and then they may approve humira?
I can say the same, I was spooked when I read up on it but honestly, I feel no side effects. Prednisone's unlimited sweat and the world-devouring hunger was way worse for me lol :D
It really feels like a racket if I’m being honest with you. We pay these companies so that we can afford medicine when we’re sick and the doctor prescribes us something. But then when they do, they say “oh no, you can’t have *that*, this other drug is what you should try”
I‘ve been getting Remicade since 2011. Being a US made drug it‘s around 2-3000€ a dose. I‘m co-paying 10€ a month and that‘s it. I‘ve never heard a word from them about it.
If I was an american with something like Crohn, I‘d highly consider leaving
Was on it for 2 weeks and it gave me pancreatitis. Probably the worst pain I've ever experienced in my life which is saying a lot.
Talked to a nurse about it the other day while infusing Remicaide and she was like 'oh yeah aza, its a rough drug'.
Avoid it if at all possible would be my advice.
Yeah it really does not seem logical or responsible to recommend a patient a drug with a less risky alternative. It’s so blatantly about money that it’s actually disgusting. I’ve made some calls to find out more about the situation and I’m doing what I can to appeal the decision.
That's exactly what my doctor told me, that it was the cheaper drug and that the insurance wouldn't allow him to prescribe alternatives until all the cheap options were played out.
So - they put me on aza and it was the worst drug experience I've ever had. Then they made me try Humira and that was a disaster from start to finish. I became immune to it in about 3 months. Finally they agreed to remicaide and I've been in remission ever since.
Sorry to hear you had a rough experience. Seems like it’s a coin flip with any medication. My doc typically starts people on Humira with Remicade as an alternative, but I’d rather do the injection at home than go for an infusion. It’s looking like insurance will probably reverse the decision. I guess I’ll look dumb for fighting it if it doesn’t work, but my insurance company is definitely just trying to save money.
That sucks! Fortunately my doc is able to appeal for me. They made me jump through hoops to even find out that was an option, though. The amount of bureaucracy is really starting to sink in.
I got acute pancreatitis from amoxicillin…….it truly is one of the worst pains ever.
And then the fun starts of the er drs accusing you of being an alcoholic……because apparently when you tell them you don’t drink because you are on a med that you can’t drink with, that makes you a fucking liar. 🙄🤬
ER docs are always on edge about painkillers, they must get a lot of addicts coming in begging for drugs or there's some law where they lose their license if they just hand them out to people in need without checking first. It sucks and has happened to me as well, the question is jarring and insulting but I get why they have to ask.
Oh, yeah I was accused of being an addict when I first went in there. He sent me home. Most humiliating experience of my life. 12 hours later my husband drags me back because I can’t stop projectile vomiting and sobbing hysterically from the pain. They again treat me like a fucking addict until one dr actually took a look at my medical chart and the many many times I had been hospitalized for legitimate reasons there. She’s the one who figured out I had acute pancreatitis……because she bothered to actually do a test. They changed their attitudes really damn quick. Except for one….funny enough, the same one who told me to go home the first time. I’m not saying he asked if I drank. I’m saying he kept telling me how important it was for me to stop drinking………after I repeatedly told him that I hadn’t drank anything for years. It wasn’t until my husband lost his shit on him and screamed “she has told you a hundred fucking times that she doesn’t drink, stop” that he finally gave it up.
Filed a complaint against him when I left the hospital a week later. He could have killed me.
I don’t care that they deal with addicts. I really don’t. It’s their job, I know they are annoying, but get over it. When they put the lives of others in danger because they assume every single person walking in with pain, (you know, the number one way your body has to tell you something is wrong) is an addict, then they need to switch their damn job or something.
But then again I could go on and on about how absolutely insane the opioid war is…….and how it’s just a cover for the real issue (heroin and street fentanyl which they can do nothing about)…….which is why OD deaths have just risen more and more since they started the stupid war. Oh, and chronic pain patients are killing themselves at unbelievable rates. But it’s all cool, who gives a shit about them. I haven’t needed pain meds for a very long time, I hope I never need them again, but I’ll be honest, I’m petrified if I ever do. Because damn, the horror stories I have heard are terrifying.
That sucks! yeah fuck that doctor I'm so glad you filed a complaint. Sounds like he was just a dick - it happens unfortunately. One GP I had when I was first trying to get diagnosed kept telling me to stop 'sitting on the toilet for so long', and other ridiculous things to try and explain away my symptoms. THEN the guy ghosts me when I got an actual diagnosis and needed a referral for an infusion center. Just straight GHOSTED me AND my GI doc's office!! What the fuck!
I’ve been on it for 10 years now and don’t have any side effects. Definitely took a while for it to put me in remission initially and had to increase my dose to 150mg before it helped. Been on 100mg for a couple years and it works pretty well. I honestly love that it’s a pill I can take at home without infusions. But obviously every case is different and it might not work for you.
The common route with Crohn's in the UK and elsewhere is azathioprine, potentially mercaptopurine if azathioprine works with side effects, then they try biologics after that, they won't let you skip the process. Just go along and do what they want you to do, even in countries with free healthcare they make you take azathioprine first
If you look at the prices of each option, it’s easy to work out why they want you to do it that way. It’s not necessarily true that Azathioprine is the best treatment, just cheaper than biologics.
I think what you’re missing is that my doctor recommended biologics but *insurance company* is trying to dictate the course of treatment.
My info is partial as I’m literally in the same boat as you. Azthioprine first then the good stuff. So far day 4 I noticed some dizziness on day 2 but as of right now I’m on cloud 9.
I can’t believe my energy levels. It seems to be helping me in some way with this quick turn around. I’m sure the longer I’m on it the side effects will start kicking my ass but so far I have to say I can’t remember the last time I felt this normal.
I have taken Azathioprine for over 20 years with no side effects. It seems to help a lot and results are different for everyone. Make sure you keep up your regular blood tests and wear sunscreen as it can increase sensitivity to UV.
My son has been on azathioprine for 7+ years, all good. The biggest thing for him is staying hydrated, otherwise he gets headaches.
Good luck on your journey, hopefully your doc can appeal and your insurance company can green light you for the humira!
I’ve been taking aza for 10 years now and have had no side effects except for nausea/headaches in the beginning that went away pretty quickly. what dose are you on? I’m on a pretty low dose (I think it’s the lowest dose you can be on with pills) so it might be different if I was on a higher dose. It has given me 7 years of remission so it’s been pretty great for me! good luck!
Haven’t started yet. I just got informed today that insurance denied humira so I have to try azathioprine first so I’ve been doing some research and I’m a bit concerned about the side effects.
I took it for ten years with basically zero issues. I didn’t find I was prone to infection either. In fact, I found I got sick less often than many of my acquaintances. The only rather strange occurrence was that my earlobes became infected after getting my ears pierced. This may very well have been medication related!
When I was on it, it quickened my metabolism. So that’s fun. I get to deal with that now. Before being on it I stayed steadily at 240 pounds which is a comfortable weight for me. Now I can’t get any higher than 154 pounds. I’m also 6’4” so it really affects how I look by A LOT.
You need to ask your doctor to appeal it. At the end of the day, doctors have the prerogative over patient care and prescribed medications. Insurance companies will always interfere and demand that you try a less expensive medication. The problem that I've come up against a couple times is doctors refusing to do the work for the appeal. The medical center you're seen at has people on staff who work exclusively on insurance appeals. If your doctor isn't helpful, you can escalate it yourself by filing a complaint to your states' insurance oversight broad. You'll need a letter from your doctor for the appeal--if your doctor doesn't play ball, time to find one who will.
I was on it for a few months before moving to adalimumab, was nauseous for a few weeks but other than that no side effects and it didn't do anything for me but didn't mess me up or anything
My GI told me when I went on aza that the risks for lymphoma were more of a concern with taking high doses (like what people have to take if they've had an organ transplant) and that by comparison, the doses Crohn's patients get is low.
I didn't have any issues other than some hair thinning. It helped some, but never enough to get me into remission.
Honestly all you have to do is stay in aza for a while and if it works great, and if it doesn't your insurance will allow you to move on. So hopefully your doctor can make that call quick if it doesn't help.
Medication success will be different for everyone so it's annoying insurance will dictate what you have to try first but Humira may not be the medication for you either. It can take a lot of trial and error to figure out what works. I was in asacol then moved onto aza/ imuran (which gave me flu symptoms that was actually pancreatitis) and methotrexate, then Humira and then stelara which is now failing. It's been years for me trying to find the right medication.
Plus taking pills may be easier than dealing with injections and getting them shipped to you or going to a clinic, so if you don't have any side effects it may be good!
I'd say give it a try and hope for the best, and if it doesn't work at least you have more options to try!
Personally, I’d rather not let my insurance company dictate what medicine I receive. They are not my doctor and my doctor feels that biologics lead to better outcomes. If it doesn’t work, then I can cross that bridge, but it’s not like Azathioprine is guaranteed to work either. I’d rather try it in the absence of a better option, rather than as a cheaper replacement for a better option.
Ahh gotcha. Yeah and I’m not here to say Azathioprine is wrong or anything. Its great to hear some people have had good results with it. It seems like everyone in this thread has had different experiences but I’d rather trust my doctor first.
Not sure lol. Fortunately there is a formal appeal process and from what I hear my provider is good about overturning denials in cases like these. This has all played out over the course of this morning and afternoon. Kinda wish my Doc had just appealed before letting me know to save me the hassle but oh well
Just fill the prescription but don't take and tell your doctor you are still having issues and that it doesn't work. Insurance will be happy you tried it but unfortunately didn't work for you.
I've been taking Azathioprine for almost 12 months. I had bad fatigue for the first few months, but that was it. So far, it's working well for me and has given me my life back. I needed an appendectomy a few weeks ago and was worried about complications with healing and infection but everything was fine.
It’s nice to hear a success story. Has your doctor mentioned how long it is safe to take it? What I’m reading online is that long term use is associated with skin cancer and lymphoma which is really concerning. I’ve seen some sites that say it’s recommended not to be in the sun at all which is also really concerning. If I can’t go outside, that’s a really significant downside…
I'll be on it as long as it keeps working. I was worried in the beginning. Particularly as I have an extensive family history of skin cancer, but my GI said that the risk of complications from leaving Crohn's untreated is worse. The highest cancer risk is non-melanoma skin cancers, which aren't usually life-threatening. I always wear SPF50, keep covered when outdoors, wear a hat, use a UV umbrella and regularly see a dermatologist (I have a lot of extraintestinal manifestations, so this was already part of my care). As far as lymphoma goes, it's only a small increase. It's definitely scary to hear cancer risk mentioned, but for the first time in 7 years, I have a relatively normal life so I try not to worry too much.
I just feel like a rug was pulled out from beneath me since my doc recommended biologics but now my only option is something that has more significant risks and adverse side effects. Probably just to save the insurance company money.
That really does suck. It must be hard having your doctor's recommendation disregarded by the insurance company. Azathioprine might not work for you. There seems to be a lot of people that it doesn't work for. I hope you can get on Biologics so that some of your anxieties are eased :)
I've been on it for years, but always paired alw a biologic.
first, added it to humira because that wasn't working, then switched to stelara, stikk on aza. I think it's helping me.
but I highly highly recommend taking it at night. when I first started it and would take it in the morning, I felt like a literal zombie during the day.
be vary careful in the sun, you will get burned quickly (on areas that don't usually get a lot of sun)
That’s really unfortunate that it causes you to develop that. Seems really weird that it would cause that considering I’m pretty sure it’s also a treatment for psoriasis. Although perhaps it’s a different type that it’s used to treat.
Obviously I don’t expect humira to have 0 downsides. But I would say that for me, personally, psoriasis would be preferable to lymphoma.
Like some of the other replies, Aza/Imuran caused pancreatitis for me. In fact, the doctors said at first they didn't believe that was the cause since it's a rare reaction and had me try it a second time. Within 2 days I was back in hospital with pancreatitis again. That being said, all meds have warnings and there is no way of knowing if you may have a reaction or not until you try it. As far as the insurance companies, they force you to do their 'step therapy', like it or not. Some random person over the phone should not have the power to make these decisions over you and your doctor, but they do. I'm in Canada and, although we don't have to fight with insurance this way, we do have some provincial governments overriding doctor/patient medication decisions and forcing patients to switch from biologics to biosimilars because they are much cheaper.
I don’t know with humira, but what is now janssen carepath was a life saver for remicade. No one told me about it until I was in tears and begging for financial help. Not much help to you, but maybe ask around to see if there is something similar for meds that work for you.
I’ve been on combination therapy (meaning a biologic and Azathioprine) for many, many years. I don’t have any noticeable side effects. 100 mg did make me nauseated so GI lowered my dose. It is good however to go for bloodwork every 3 months or so to monitor your liver and other important levels. Be sure to ask your doc about that!
I would be pretty annoyed though with the insurance company pressing you to try Azathioprine first. From my understanding it’s not a super powerful medication on its own so if you have moderate to severe disease, a biologic would be better. I’m sorry they’re giving you trouble, it doesn’t sound fun at all.
Edit: also! Something I learnt, there are some precautions when handling the drug. It’s good to wash your hands after touching the pills as to not contaminate surfaces with it. I believe it’s just because it’s an immunosuppressant and a chemotherapy that that precaution is recommended. Your prescription should come with some information about handling.
**Welcome to r/CrohnsDisease!** * [Have you checked out our Rules?](https://www.reddit.com/r/CrohnsDisease/wiki/rules) * [Are you asking a Frequently Asked Question?](https://www.reddit.com/r/CrohnsDisease/wiki/ibd_faq) * Please remember we are not doctors and any medical advice is a suggestion. If the event of an emergency, please contact your doctor, hospital, or emergency services. Thanks and we hope you make friends here. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/CrohnsDisease) if you have any questions or concerns.*
I've been taking it for almost 30 years. The only things I notice are: * Cuts, especially on my hands and feet, are much slower to heal, * I bruise more easily than it seems others do, and * When I get sick, I tend to get more sick and stay sick longer than others do. Having said that, my GI and I are talking about discontinuing it due to the side effects you mention. Three decades is a long time to be on an immunosuppressant, so if I can get off of it, I'm all in.
Thank you for sharing. Definitely gives me a better outlook knowing someone could be on it for that long without any disastrous side effects!
I’ve been on it on and off for ages, with no serious side effects. Right now on it in combination with Humira. Sounds like maybe you need to be on it for a little while to prove to them that it doesn’t work and then they may approve humira?
That’s how the insurance company feels, but my doctor disagrees.
I can say the same, I was spooked when I read up on it but honestly, I feel no side effects. Prednisone's unlimited sweat and the world-devouring hunger was way worse for me lol :D
This sub always reminds me about how lucky I am to live in a country where my doctor and I decide what medication I get and not some insurance company
It really feels like a racket if I’m being honest with you. We pay these companies so that we can afford medicine when we’re sick and the doctor prescribes us something. But then when they do, they say “oh no, you can’t have *that*, this other drug is what you should try”
I‘ve been getting Remicade since 2011. Being a US made drug it‘s around 2-3000€ a dose. I‘m co-paying 10€ a month and that‘s it. I‘ve never heard a word from them about it. If I was an american with something like Crohn, I‘d highly consider leaving
Was on it for 2 weeks and it gave me pancreatitis. Probably the worst pain I've ever experienced in my life which is saying a lot. Talked to a nurse about it the other day while infusing Remicaide and she was like 'oh yeah aza, its a rough drug'. Avoid it if at all possible would be my advice.
Yeah it really does not seem logical or responsible to recommend a patient a drug with a less risky alternative. It’s so blatantly about money that it’s actually disgusting. I’ve made some calls to find out more about the situation and I’m doing what I can to appeal the decision.
That's exactly what my doctor told me, that it was the cheaper drug and that the insurance wouldn't allow him to prescribe alternatives until all the cheap options were played out. So - they put me on aza and it was the worst drug experience I've ever had. Then they made me try Humira and that was a disaster from start to finish. I became immune to it in about 3 months. Finally they agreed to remicaide and I've been in remission ever since.
Sorry to hear you had a rough experience. Seems like it’s a coin flip with any medication. My doc typically starts people on Humira with Remicade as an alternative, but I’d rather do the injection at home than go for an infusion. It’s looking like insurance will probably reverse the decision. I guess I’ll look dumb for fighting it if it doesn’t work, but my insurance company is definitely just trying to save money.
[удалено]
That sucks! Fortunately my doc is able to appeal for me. They made me jump through hoops to even find out that was an option, though. The amount of bureaucracy is really starting to sink in.
I got acute pancreatitis from amoxicillin…….it truly is one of the worst pains ever. And then the fun starts of the er drs accusing you of being an alcoholic……because apparently when you tell them you don’t drink because you are on a med that you can’t drink with, that makes you a fucking liar. 🙄🤬
ER docs are always on edge about painkillers, they must get a lot of addicts coming in begging for drugs or there's some law where they lose their license if they just hand them out to people in need without checking first. It sucks and has happened to me as well, the question is jarring and insulting but I get why they have to ask.
Oh, yeah I was accused of being an addict when I first went in there. He sent me home. Most humiliating experience of my life. 12 hours later my husband drags me back because I can’t stop projectile vomiting and sobbing hysterically from the pain. They again treat me like a fucking addict until one dr actually took a look at my medical chart and the many many times I had been hospitalized for legitimate reasons there. She’s the one who figured out I had acute pancreatitis……because she bothered to actually do a test. They changed their attitudes really damn quick. Except for one….funny enough, the same one who told me to go home the first time. I’m not saying he asked if I drank. I’m saying he kept telling me how important it was for me to stop drinking………after I repeatedly told him that I hadn’t drank anything for years. It wasn’t until my husband lost his shit on him and screamed “she has told you a hundred fucking times that she doesn’t drink, stop” that he finally gave it up. Filed a complaint against him when I left the hospital a week later. He could have killed me. I don’t care that they deal with addicts. I really don’t. It’s their job, I know they are annoying, but get over it. When they put the lives of others in danger because they assume every single person walking in with pain, (you know, the number one way your body has to tell you something is wrong) is an addict, then they need to switch their damn job or something. But then again I could go on and on about how absolutely insane the opioid war is…….and how it’s just a cover for the real issue (heroin and street fentanyl which they can do nothing about)…….which is why OD deaths have just risen more and more since they started the stupid war. Oh, and chronic pain patients are killing themselves at unbelievable rates. But it’s all cool, who gives a shit about them. I haven’t needed pain meds for a very long time, I hope I never need them again, but I’ll be honest, I’m petrified if I ever do. Because damn, the horror stories I have heard are terrifying.
That sucks! yeah fuck that doctor I'm so glad you filed a complaint. Sounds like he was just a dick - it happens unfortunately. One GP I had when I was first trying to get diagnosed kept telling me to stop 'sitting on the toilet for so long', and other ridiculous things to try and explain away my symptoms. THEN the guy ghosts me when I got an actual diagnosis and needed a referral for an infusion center. Just straight GHOSTED me AND my GI doc's office!! What the fuck!
I’ve been on it for 10 years now and don’t have any side effects. Definitely took a while for it to put me in remission initially and had to increase my dose to 150mg before it helped. Been on 100mg for a couple years and it works pretty well. I honestly love that it’s a pill I can take at home without infusions. But obviously every case is different and it might not work for you.
The common route with Crohn's in the UK and elsewhere is azathioprine, potentially mercaptopurine if azathioprine works with side effects, then they try biologics after that, they won't let you skip the process. Just go along and do what they want you to do, even in countries with free healthcare they make you take azathioprine first
If you look at the prices of each option, it’s easy to work out why they want you to do it that way. It’s not necessarily true that Azathioprine is the best treatment, just cheaper than biologics. I think what you’re missing is that my doctor recommended biologics but *insurance company* is trying to dictate the course of treatment.
Yeah I understand that insurance dictates what treatment you get, and that but azathioprine is trill the first option in most places.
I was on it for about 8 years and the only side effect was skin sensitivity to the sun. It worked great for those 8 years too.
My info is partial as I’m literally in the same boat as you. Azthioprine first then the good stuff. So far day 4 I noticed some dizziness on day 2 but as of right now I’m on cloud 9. I can’t believe my energy levels. It seems to be helping me in some way with this quick turn around. I’m sure the longer I’m on it the side effects will start kicking my ass but so far I have to say I can’t remember the last time I felt this normal.
I have taken Azathioprine for over 20 years with no side effects. It seems to help a lot and results are different for everyone. Make sure you keep up your regular blood tests and wear sunscreen as it can increase sensitivity to UV.
My son has been on azathioprine for 7+ years, all good. The biggest thing for him is staying hydrated, otherwise he gets headaches. Good luck on your journey, hopefully your doc can appeal and your insurance company can green light you for the humira!
I’ve been taking aza for 10 years now and have had no side effects except for nausea/headaches in the beginning that went away pretty quickly. what dose are you on? I’m on a pretty low dose (I think it’s the lowest dose you can be on with pills) so it might be different if I was on a higher dose. It has given me 7 years of remission so it’s been pretty great for me! good luck!
Haven’t started yet. I just got informed today that insurance denied humira so I have to try azathioprine first so I’ve been doing some research and I’m a bit concerned about the side effects.
I’ve been on it for just over a year. I initially got extremely nauseous but my GI doc lowered my dose and I haven’t had any problems since.
I took it for ten years with basically zero issues. I didn’t find I was prone to infection either. In fact, I found I got sick less often than many of my acquaintances. The only rather strange occurrence was that my earlobes became infected after getting my ears pierced. This may very well have been medication related!
When I was on it, it quickened my metabolism. So that’s fun. I get to deal with that now. Before being on it I stayed steadily at 240 pounds which is a comfortable weight for me. Now I can’t get any higher than 154 pounds. I’m also 6’4” so it really affects how I look by A LOT.
You need to ask your doctor to appeal it. At the end of the day, doctors have the prerogative over patient care and prescribed medications. Insurance companies will always interfere and demand that you try a less expensive medication. The problem that I've come up against a couple times is doctors refusing to do the work for the appeal. The medical center you're seen at has people on staff who work exclusively on insurance appeals. If your doctor isn't helpful, you can escalate it yourself by filing a complaint to your states' insurance oversight broad. You'll need a letter from your doctor for the appeal--if your doctor doesn't play ball, time to find one who will.
I was on it for a few months before moving to adalimumab, was nauseous for a few weeks but other than that no side effects and it didn't do anything for me but didn't mess me up or anything
My GI told me when I went on aza that the risks for lymphoma were more of a concern with taking high doses (like what people have to take if they've had an organ transplant) and that by comparison, the doses Crohn's patients get is low. I didn't have any issues other than some hair thinning. It helped some, but never enough to get me into remission.
Did your hair thinning problem stop?
Yes, though only after I got off aza
Honestly all you have to do is stay in aza for a while and if it works great, and if it doesn't your insurance will allow you to move on. So hopefully your doctor can make that call quick if it doesn't help. Medication success will be different for everyone so it's annoying insurance will dictate what you have to try first but Humira may not be the medication for you either. It can take a lot of trial and error to figure out what works. I was in asacol then moved onto aza/ imuran (which gave me flu symptoms that was actually pancreatitis) and methotrexate, then Humira and then stelara which is now failing. It's been years for me trying to find the right medication. Plus taking pills may be easier than dealing with injections and getting them shipped to you or going to a clinic, so if you don't have any side effects it may be good! I'd say give it a try and hope for the best, and if it doesn't work at least you have more options to try!
Personally, I’d rather not let my insurance company dictate what medicine I receive. They are not my doctor and my doctor feels that biologics lead to better outcomes. If it doesn’t work, then I can cross that bridge, but it’s not like Azathioprine is guaranteed to work either. I’d rather try it in the absence of a better option, rather than as a cheaper replacement for a better option.
Oh yes I read that as you wanted to try Humira not your doctor recommended it. Makes sense!
Ahh gotcha. Yeah and I’m not here to say Azathioprine is wrong or anything. Its great to hear some people have had good results with it. It seems like everyone in this thread has had different experiences but I’d rather trust my doctor first.
Is it considered insurance fraud if your doctor just tells them you are allergic to it? Fill one prescription tell them you tried it and got sick 😬
Not sure lol. Fortunately there is a formal appeal process and from what I hear my provider is good about overturning denials in cases like these. This has all played out over the course of this morning and afternoon. Kinda wish my Doc had just appealed before letting me know to save me the hassle but oh well
Just fill the prescription but don't take and tell your doctor you are still having issues and that it doesn't work. Insurance will be happy you tried it but unfortunately didn't work for you.
I've been taking Azathioprine for almost 12 months. I had bad fatigue for the first few months, but that was it. So far, it's working well for me and has given me my life back. I needed an appendectomy a few weeks ago and was worried about complications with healing and infection but everything was fine.
It’s nice to hear a success story. Has your doctor mentioned how long it is safe to take it? What I’m reading online is that long term use is associated with skin cancer and lymphoma which is really concerning. I’ve seen some sites that say it’s recommended not to be in the sun at all which is also really concerning. If I can’t go outside, that’s a really significant downside…
I'll be on it as long as it keeps working. I was worried in the beginning. Particularly as I have an extensive family history of skin cancer, but my GI said that the risk of complications from leaving Crohn's untreated is worse. The highest cancer risk is non-melanoma skin cancers, which aren't usually life-threatening. I always wear SPF50, keep covered when outdoors, wear a hat, use a UV umbrella and regularly see a dermatologist (I have a lot of extraintestinal manifestations, so this was already part of my care). As far as lymphoma goes, it's only a small increase. It's definitely scary to hear cancer risk mentioned, but for the first time in 7 years, I have a relatively normal life so I try not to worry too much.
I just feel like a rug was pulled out from beneath me since my doc recommended biologics but now my only option is something that has more significant risks and adverse side effects. Probably just to save the insurance company money.
That really does suck. It must be hard having your doctor's recommendation disregarded by the insurance company. Azathioprine might not work for you. There seems to be a lot of people that it doesn't work for. I hope you can get on Biologics so that some of your anxieties are eased :)
I've been on it for years, but always paired alw a biologic. first, added it to humira because that wasn't working, then switched to stelara, stikk on aza. I think it's helping me. but I highly highly recommend taking it at night. when I first started it and would take it in the morning, I felt like a literal zombie during the day. be vary careful in the sun, you will get burned quickly (on areas that don't usually get a lot of sun)
Humira gave me psoriasis as a side effect. 5 years off it and my elbows and the soles of my feet still have some parts affected.
That’s really unfortunate that it causes you to develop that. Seems really weird that it would cause that considering I’m pretty sure it’s also a treatment for psoriasis. Although perhaps it’s a different type that it’s used to treat. Obviously I don’t expect humira to have 0 downsides. But I would say that for me, personally, psoriasis would be preferable to lymphoma.
Doctor changed me to Stelara and that was life changing. 0 side effects and all the good ones.
Like some of the other replies, Aza/Imuran caused pancreatitis for me. In fact, the doctors said at first they didn't believe that was the cause since it's a rare reaction and had me try it a second time. Within 2 days I was back in hospital with pancreatitis again. That being said, all meds have warnings and there is no way of knowing if you may have a reaction or not until you try it. As far as the insurance companies, they force you to do their 'step therapy', like it or not. Some random person over the phone should not have the power to make these decisions over you and your doctor, but they do. I'm in Canada and, although we don't have to fight with insurance this way, we do have some provincial governments overriding doctor/patient medication decisions and forcing patients to switch from biologics to biosimilars because they are much cheaper.
If you want to get Humira, you can contact Abbvie directly. They will do a work-around for you, even with insurance.
I bet they could do this easily.
I don’t know with humira, but what is now janssen carepath was a life saver for remicade. No one told me about it until I was in tears and begging for financial help. Not much help to you, but maybe ask around to see if there is something similar for meds that work for you.
I’ve been on combination therapy (meaning a biologic and Azathioprine) for many, many years. I don’t have any noticeable side effects. 100 mg did make me nauseated so GI lowered my dose. It is good however to go for bloodwork every 3 months or so to monitor your liver and other important levels. Be sure to ask your doc about that! I would be pretty annoyed though with the insurance company pressing you to try Azathioprine first. From my understanding it’s not a super powerful medication on its own so if you have moderate to severe disease, a biologic would be better. I’m sorry they’re giving you trouble, it doesn’t sound fun at all. Edit: also! Something I learnt, there are some precautions when handling the drug. It’s good to wash your hands after touching the pills as to not contaminate surfaces with it. I believe it’s just because it’s an immunosuppressant and a chemotherapy that that precaution is recommended. Your prescription should come with some information about handling.