Recently Diagnosed With Chrohns

[Shryock86]

I was just diagnosed with chrohns in June after living with it for 5 years so far. So since I was 19-20 years old I have had chrohns. I am on Pentasa 500mg 2 times daily (4 pills each time). I am glad to say that the medication does help my symptoms, but is not stopping it like I was hoping.

This week my Doctor is planning to put me on Imuran. I am not sure what dosage yet, but that is the plan. I have already done the blood work for it, and I will be getting a TB test done soon, as well as getting my Hep A & B vaccines before they put on Imuran. I honestly do not know what any of this has to do with it, but I am willing to do anything to get better already.

I was just wondering for anyone else who is on Imuran, or who has been on it, what kind of side effects did you experience ? Were you lucky enough to get into remission ? How long did it take before Imuran start to work for you ?

Thank you in advance.

 

[DustyKat]

Hi Shryock and :welcome:

Both of my children are on Imuran but basically started following surgery so they were in remission already. Normally the dosage is calculated from your weight, so 2-2.5mg per kilo.
Neither of my children has experienced side effects thus far. My son is only early days yet but he has not had any return of symptoms following his surgery in early April.

My daughter has been on Imuran for 5 years now. She also has had no return of symptoms since surgery in July 2006. We have an Imuran Club here that you may like to have a browse through.

I note you have now been diagnosed but we also have an Undiagnosed Club here that would most likely benefit from your experiences of being undiagnosed for 5 years, that must have been very difficult for you.

Imuran is an immunosuppresive but the testing you have mentioned, aside from the TPMT test, seems more in line with commencing on a biologic, like Humira, well in our experience anyway. Did the doc mention this as the next step if Imuran isn't successful? I thought he/she may be preparing the groundwork just in case.

Good luck and I hope the Imuran is as successful for you has it has been for my own children. Welcome aboard!

Dusty. xxx

 

[Dexky]

Welcome! Dusty's right...imagine that! My son was on 6mp(close relative to Imuran) then switched to Humira. The TB test came before the Humira. I know he's also had the Hep. vaccs. but I think those were required for school anyway. Good luck!!

 

[xJillx]

Hi and welcome! I don't have any experience with Imuran, but I know several on the forum have done well on it. I hope it works for you, as well. Good luck!

 

[scottmyster]

HI shryock, Welcome to the forum i haven't myself had any experience with lmuran. but like jill said a few of us at the forum are on it and they are doing great. hopefully it will work for you. i think there is a lmuran club here at the forum. just check and see and send them a thread and ask some questions if not just ask about it on forum has general and you will get people to respond. best wishes.

scott

 

[Gwen pippy]

Hi Shryock and welcome

You have come to the right place, there are so many friendly people here only to willing to help and to listen, they have helped me more than I could possibly say. I was on Imuran for a couple of years, found it great no side effects for me and remission seemed to happen fast and lasted over 2 yrs, got injury and had to stop taking suddenly, but when I went back on it wouldn't work. I had flare after, got it under control with preds and pentasa and that lasted 5 yrs but wore off, another flare 2010, preds with asacol (just waiting to see if I can achieve remission again)

I wish you the best of luck with Imuran, I hope you feel better real soon.

Keep us informed

Gwen xxx

 

[Shryock86]

Thanks to everyone who has replied. I am very anxious to get on Imuran because I would love to get into remission and start my life again. Before all this started I was on a great start to my life. I had a great job, was about to get my own place and then when this started my life has been on a decline. As we all know how having chrohns can make you miss out on so much in life. People who do not have chrohns just do not understand how debilitating it can be. They all think just take some imodium and you will be okay. Thanks again to everyone, and I will definitely be back on this forum.

 

[*AJ*]

Welcome!

I am on Imuran or Azathioprine as it is in the UK but I have to admit I haven't noticed any side effects and noticed results within a week or two. So far so good!

Hope you feel as well as you can soon =)

AJxx

 

[Shryock86]

Welcome!

I am on Imuran or Azathioprine as it is in the UK but I have to admit I haven't noticed any side effects and noticed results within a week or two. So far so good!

Hope you feel as well as you can soon =)

AJxx

Thanks AJ, would you say that you noticed better results as in you feel "normal" again ?

 

[Shryock86]

well my TPMT test came back today as normal, and tomorrow my Doctors will look at my TB test (Arm) and as long as it all comes back normal I should be on Imuran as of tomorrow. What really does suck though is right now being out of work because of this, I am on a State Program that will no longer be available as of November 1, 2011. So I have 2 1/2 months to try and get better or else I will no longer have any medical coverage, so no more Doctors or Meds.

 

[ameslouise]

Hi Shyrock and welcome!

Sorry to hear about your coverage coming to an end. You can look into any assistance programs that may be available thru the pharmaceutical company that makes Imuran. I know there are programs out there for both Humira and Remicade. You should not have to discontinue treatment due to lack of coverage.

Good luck - hope it works for you!! - Amy

 

[Swirl]

You should see how you can get your meds for free. I've gotten Pentasa for a few dollars a month when i had no insurance and a $20 bill to see the doctor in NY. I can also get free Lialda for life with this GI office where I've been doing a clinical trial. I didn't know this and your average doctors wont say this! There's ways to get your meds in this country. Its a serious condition.

 

[Shryock86]

So my Dr. finally put me on Imuran as of today. Just waiting for the pharmacy to fill it so I can go and pick it up. Wish me luck. I am praying that this along with Pentasa can get me into remission.

 

[Gwen pippy]

Sending you big hugs and loads of Irish Luck xxx

 

[Shryock86]

Sending you big hugs and loads of Irish Luck xxx

Thank you

 

[DustyKat]

Sending mega loads of luck your way!...:goodluck::goodluck::goodluck:

Dusty. :heart: