Can't come off Pred - possibly starting 6-MP

[LS25]

Hi all,

Just looking for some advice. Having major problems at moment. On pred since end of May and once I'm on it, I'm great until very low doses and then all hell breaks loose. Had the night from hell last night, the pain was unbearable and long story short, spoke to my GI today and I'm back up on 40mg and will see him next Tuesday. Just appears I can't come off it without intense pain - worse than labour contractions and that is no exaggeration. I never got these pains when I first went about my symptoms last year - honestly feel like I'm 10 times worse. On Pentasa, 4mg a day and I wonder if they are doing anything for me at all??

Anyway GI mentionned on the phone today that for people who are tending towards being steroid dependent, we might look at 6-MP's which i know nothing about so googling all around me. Is this something you stay on continuously - what basically should I be asking him next week as want to go in with a list of questions and come out understanding this course of treatment. I also want to have a 3rd child if I'm lucky enough as soon as possible but I know this has to be gotten under control first so just wondering if anyone has been on it while pregnant and how safe it is? I was reading it takes 3 months to take effect so I presume you stay on pred during that time?

Any advice would be really appreciated.

 

[SdN]

I don't have any experience with 6-MP but I do take 150mg of Imuran daily which is a similar drug. I am a male but from what I've heard females can take Imuran while pregnant though it isn't recommended so maybe it's the same for 6-MP?

Yes 6-MP is meant to be taken long term, meaning for the rest of your life so long as it works and doesn't cause problems. However, no one can tell the future so maybe one day there will be a cure or maybe another drug that lets you get off of 6-MP so don't stress too much about the "rest of your life" idea.

 

[Jennifer]

I take 6MP and right on the bottle is says, "Do not take if you are pregnant, plan to become pregnant or are breastfeeding." I was always told I'd have to come off of it if I wanted to have children. Its in immune suppressant and you need blood work done often to make sure it isn't affecting any of your other organs negatively. I have blood work done once a month. Its helped me stay in remission the past 12 years. I hope it works for you too. I don't recall it taking 3 months to take effect but its effects are certainly not as fast as steroids. Hope you can get off the pred soon. Its quit common to not be able to get past the 10mg mark (or near it) without problems.

 

[LS25]

Thanks guys for the replies. Much appreciated. I've been researching it a bit and it seems it is safe to take while pregnant - it always says it on any bottle it seems about 'not' taking it while pregnant, planning etc but looks like it's actually okay - anyway back to my GI tuesday so we'll chat about a million things - I've a list as long as my arm. The joys eh!

 

[Lydia]

The general consensus is that you can take imuran or 6MP while pregnant. Most GIs beleive its more important to prevent flares while pregnant. The benefits to this is greater that the small risk associated with the drug. Many women on 6MP or imuran go on to have healthy babies.

After I come off some of my meds and am down to just imuran, we plan to start trying again, and I plan to stay on imuran while pregnant and breastfeeding.

 

[Crohnadian]

I've always had trouble weaning down pred. I've never been OFF pred since my diagnosis in 2003. I've been as low as 5mg (now) but with difficulty (I'm still not as energetic or involved as I'd like to be in life). Whenever I get to 20mg I start to feel it and when I hit 15mg I know I'm in for pain and diminished appetite and extreme fatigue and pain. The pain seems to linger forever and it never really goes away completely. I'm taking Humira and LDN as well, on top of the 5mg pred.