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seasons21 - how is the Imuran going?

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Posted 5/11/2012 9:36 PM (GMT 0)
Seasons, I'm starting the Imuran tonight. GI doc called and said the TPMT test came back all good. 

I get my first CBC and ALT blood test in a 2 weeks, then 6 weeks he said.  I'm going back up to 20mg of prednisone too for now since Imuran takes 4 weeks to work he said.  Hopefully I don't get any side effects! I can't be worse than the Prednisone, that's for sure.

Posted 5/11/2012 11:19 PM (GMT 0)
Physically I'm doing fine on it. At 50mg (I'm on 6mp/not Imuran) so far. I get tested in 2 weeks too. Mentally I'm not happy at all about it, but for now I'm trying not to think about it because I feel I have to at this point. I'm on 20mg of Prednisone too. Sxs are better but I'm not down to no blood yet. I still see some and it varies day to day. I opted not to do Remi too. I can live with sxs for now.

Let me know how it goes! Thanks for checking in on me, it's nice to do this with someone else just starting.
Posted 5/12/2012 1:25 AM (GMT 0)
I know what you mean - I was so depressed driving home after picking up the prescription, thinking that after all these years its come to taking this.  All I can think about is 'what if I'd done this??....would I be sick?'. Wondering if I wouldn't be in this situation if I hadn't listened to the inexperience previous doctor I had and had instead insisted on seeing the senior doctor I see now.  I could kick myself for letting the other doctor make me feel like I was crazy for thinking I had UC and for letting him convince me to stop my meds.  I'm trying not to think about it too but I know how hard that is. Especially wondering if this medicine will somehow shorten my life in some way or harm me. I guess UC harms us too but its not like we want to cause even more harm to our bodies!

It didn't help when the pharmacist told me I was taking a 'high' dose - 125mg is a 'high' dose, what does that mean??? I thought transplant patients too even higher doses of this stuff!

I know I want my normal life back though to be able to do all the things I could do before for so long in remission. I don't want to feel sick all the time and spend everyday thinking about this disease - I just want to go back to not thinking about it at all and living my life. 

I really hope this drug helps both of us!

I'm starting right at 125mg tonight with dinner, so hopefully it doesn't affect me too much. Hang in there, if this makes us feel better hopefully in the end we'll be glad we did it!

Posted 5/12/2012 1:43 AM (GMT 0)
MNbeachgal: good luck with the imuran. I just want to give you a heads up so you don't get your hopes up and get yourself down too quickly... Imuran can take much longer than 4 weeks to begin working. It can take 3 months or more. It does depend on the person. I do hope it does only takes 4 weeks for you! It also depends on dosage. I started at 100 mg, bumped up to 150 after 2 months. I am now at about 4 months and blood tests just showed that there is not enough med in my system so I am now being bumped up to 200 mg. Kidney patients are usually at least at 200mg so you are not on a high dose. Like I said, i really hope it works quickly for you. I just know that I get really upset when things don't work as they are supposed to, especially when it comes to feeling better! I don't know if your dr would be willing, but maybe ask to have the med levels checked in 4 weeks to see how you are doing. I wish they hadn't waited so long to check mine.
Posted 5/12/2012 3:01 AM (GMT 0)
MNbeachgal: Transplant patients usually take twice what UC patients take. 125mg is not a high dose. Transplant patients often take at least 200mg and up to 300mg.
Posted 5/12/2012 3:54 AM (GMT 0)
I am sorry that you both had to give in and take t his medication. I remember when I started it, I felt awful about it but now, I am just thankful I got off prednisone when I did. I've been off for a year or more and I am just starting to get my old body back. I seriously feel like I wouldn't take pred again if I flared massively, I'd go right to Remicade. I am just so anti-prednisone. It bought me some time but it also brought me about 30 pounds!! I remember reading your posts way back when and thinking that it would be very difficult to pull through this without something stronger. I hate to think that way but you reminded me of myself. There was just no way I was going to get from where I was, to where I've come without a majory change. I could have opted for worms or FB or antibiotics, LDN, there were lots of things to try but most were out of my reach. FB, I don't have a good donar. Worms, I'd need at least 6k to get enough to see results. LDN, I need a doctor who would prescribe it.. It was too difficult and expensive to seek an alternative. I had to do something... it's too bad things aren't within our reach. I wonder whywhy? is it purposely out of our reach for the benefit of someone else or is it unknown/unlikely to help and that's why we aren't offered these things before immunosupressive drugs?
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