Side effects sound scary

[Grayson99]

Hi all,

My 19 year old son has just been diagnosed with Crohns.
He has been prescribed Azathioprine. However, he does not want to take them as the side effects sound pretty bad.

His main concern is being more susceptible to Cancer and losing his hair. It took the doctors about a year to diagnose him with crohns and his flare ups are not tha often. He went a period of 3 months without a flare up and that only lasted 3 days.

What are the risks in laymen terms of going on the drug? Will it do him more harm if he decides not to take them?

We live in the UK

Thanks

 

[Sophabulous]

I have been on it since September and I hand on heart haven't had a single side effect. Pentasa on the other hand made me quite ill and that's a considerably milder drug.

I know it sounds scary and yes the overall risk of cancer is higher, but it's actually still really tiny overall. My nurse had a printout showing 10,000 people and I think the risk goes from 1.9 in 10,000 to 3.5 or something in that region.

I made the executive decision that I would rather run the risk and have something resembling a life but my Crohn's is quite severe/troublesome.

Try not to worry too much, it would never have been suggested if they didn't think the benefits vastly outweigh the risks.

 

[ronroush7]

Welcome. I have been on Azathioprine for years . I have had some thinning of hair but no lost of hair as a result. Maybe you could ask the doctor about side effects and any alternatives to Azathioprine.

 

[Grayson99]

Thanks for the advice, very helpful. I will let you know how he gets on.

 

[lisadc1]

Your son's dr. will closely monitor his levels as is body adjusts to the medication. I, unfortunately, am one of the patients that could not tolerate Imuran. I developed severe pancreatitis and was in the hosptial for it for several days. I began having issues aroud 6 weeks into the treatment. Wishing him well! Let us know how he does!

 

[Tuff]

Crohn's can silently do damage to the body, even when you do not have symptoms. That's why he should have regular blood work and colonoscopies to make sure that there's no inflammation. I think it's more dangerous to be untreated. I went off azathioprine after about five years, because I was catching too many colds and infections.

 

[Ricky_V]

Hi. I have a daughter on Remicade/6MP and is experiencing good results and no side affects. Think you need to ask for rationale behind drug selection. Most GI's I talk to seem to be going with biologic + immunomodulator right from the beginning. I would also recommend Remicade before Humira as Humira shots are painful. Go big early, don't wait for more complications to develop.


I am not a doctor...just my opinion

 

[Maya142]

The other option would be Methotrexate. Many pediatric GIs are now moving towards using Methotrexate for adolescent/young adult males, because of the increased cancer risk with thiopurines. That said, the cancer risk is very small.

Methotrexate is given orally or as a shot once a week. The shot is pretty much painless. Some people have nausea with it, others tolerate it with no problem. Folic acid is given with it to prevent side effects.

My daughter was on Imuran for over a year. She had some nausea when she started it but it went away within a couple weeks. She was also on a biologic at this time. She did not have hair loss with it (and she also did not have hair loss with Methotrexate).

This is a great presentation that discusses the risks and benefits of IBD medications:http://programs.rmei.com/CCFA139VL/

There is also a Parent's section on the forum - for parents of kids with IBD. There are plenty of us with "big kids" - older teenagers/young adults. There is lots of research there, if you are interested.

Good luck!

 

[jackal]

I was on Remicade and Imuran for 6 years and developed an aggressive lymphoma and had to terminate the drugs permanently. I do not regret my decision to be on the drugs because they helped and I thought the the Crohns was worse than the chemo, radiation and surgery.Note I started in 1999 and was one of the first to get lymphoma in 2005. I can never be on biologics again. I would risk it again if I could find a dr that would prescribe it.
I had my Remicade infusion done in my office at work. I never had any side effects except extreme fatigue afterwards. I think it's definitely worth the risk.
Best of luck!!
Jackal8739

 

[jackal]

As far as catching infections you have to relearn how to live. I never catch anything. I don't touch anything in the doctors office. No elevator buttons, ,I wear a mask, I use a paper towel to sign all credit cards with the pen attached. No touching escalators,doors, stay out of crowds, always use your own pen, wipe off credit cards after they are handed back to you,
etc. no gardening, walking barefoot in grass or outside, no handling plants, no feeding animals or cleaning up after them , etc. Its a whole new way of living and you can significantly cut back on the rate of infections, Ive had 2 cancers and my immune system is shot, but i'm never sick. Really think about what you touch!!!
Jackal8739

 

[Grayson99]

Hi son has been on the tablets for a week now with no side effects. However, today he can't get out of bed. He usually gets up about 11 at the weekends but today 12.30 and he still wasn't out of bed.

Just checked on him and he says he feels sick and cold. His body aches as well and he can't get out of bed. Do these sound like side effects from the tablets and if so will it pass. Really worried.

 

[Dyana]

I have been on Azathioprine for over 6 month = no issues with it.

 

[emmaaaargh]

Hi son has been on the tablets for a week now with no side effects. However, today he can't get out of bed. He usually gets up about 11 at the weekends but today 12.30 and he still wasn't out of bed.

Just checked on him and he says he feels sick and cold. His body aches as well and he can't get out of bed. Do these sound like side effects from the tablets and if so will it pass. Really worried.

I had similar side effects a couple of weeks into taking azathioprine. Called the GI and went to hospital where they did some bloods and didn't find anything unusual, so they just put it down to an odd side-effect and it passed in a couple of days. It was awful, felt like the worst flu I'd ever had, but it went away fairly quickly, and it didn't happen again - but I'd definitely give the doctor a ring if you're concerned, just to check that it's not something else.

 

[ronroush7]

Agree

 

[GI Jane]

I remember when I first started Remicade I was so worried about losing my hair. I have long hair. My daughters said they would shave there's in solidarity with me but fortunately it wasn't needed. I only got through four doses before becoming allergic. Because of lawyers they have to list every side effect. It's good to read so you know if it's an issue to report to doctor but not healthy if we circle around that drain. Take care.

 

[JackG]

I was on Pentasa for 15 or 20 years with no symptoms. When my GI tried Azathioprine I immediately broke out with an impressive rash on my lower arms. I walked into his office without an appointment and showed my arms to his nurse and she actually stepped back. My GI was even surprised, and he cancelled it right then and there.

 

[JackG]

Ricky V, I noticed Renee takes "VSL daily probiotic". I them as well, and I think it stabilizes me and helps improve my immunity. Starting with the envelopes with the super doses you mix, I now just take one capsule a day (112.5 billion). It's somewhat expensive--$50 for 60 days--but well worth it in my opinion.

 

[northwesterner]

Hi son has been on the tablets for a week now with no side effects. However, today he can't get out of bed. He usually gets up about 11 at the weekends but today 12.30 and he still wasn't out of bed.

Just checked on him and he says he feels sick and cold. His body aches as well and he can't get out of bed. Do these sound like side effects from the tablets and if so will it pass. Really worried.

Years ago I started azathioprine after being diagnosed with Crohn's.

I took it for two weeks, and felt fine. Then all of a sudden, one day felt like I had the flu. Had a fever, hot and cold flashes, felt generally unwell.

Went to the doctor the next week, and he dismissed my concerns. Not the azathioprine ... that's not how a medication allergy manifests itself.

Okay, back on the aza. Went a couple more weeks and then suddenly, same symptoms again. Discontinued again and felt better. Saw the GI a few weeks later, and he agreed that I couldn't tolerate the medication. I discontinued it and have never been back. That was 14 years ago, when I was, 19.

There's a few others around here that have recounted similar stories over the years.

 

[sgholmes2002]

I am so glad you are all posting about Azathioprine. My 15 year old son was diagnosed with Crohn's at the beginning of Feb. 2017. I have been reading so much about Crohn's that I haven't been reading about Azathioprine until this weekend. I panicked!! HSTCL Lymphoma scares me. I called the doctor today to get reassured. He does say it is very rare somewhere between 1:300,000 and 1:500,000 depending on what medical journal you read. OK...feeling better. Then, he said what I wanted to hear. The benefits of aza outweigh the risk and if it were his child, he would put him on aza. I am still scared and will always have it on my mind especially since he fits the bill... male, young, with Crohn's on aza.

I didn't know about the hair loss. My son hasn't experienced any side affects. Glad about that and glad you warned me about the hair loss.