Will be on no medication in a few days?

[owllover]

Hello,

I have been taking azathioprine for nearly 3 weeks, this last week I increased from 50mg to 100mg and its made me so poorly. I feel like I've had flu. Ive not slept for 3 nights because Ive been waking up constantly shaking and freezing cold one minute then dripping with sweat the next. During the day Ive been headachey and generally achey all over.
I called my IBD nurse this morning and she said to stop taking it. Im tapering off the steroids which Im due to be finished in 10 days. Then Ill be on nothing! Is this normal to not take anything? Ive got moderate crohns colitis.
I go to see my dr in september but Im worried Ill just be back to square one by then. Is this wait and see method normal?

Thanks

 

[Lydia]

3 weeks is too soon to start tapering from steriods. Imuran takes like 3 months to kick in. You are going to flare. I would wait on tapering. Tapering prednisone can also cause side effects.

 

[toneloc]

Hi
I am also on 6MP, and Pred and i too am tapering off the Pred.
It is not a nice feeling-withdrawl is never a good thing.
The 6MP scares me, along with the alternatives, Humira etc:mad2:

 

[DMS]

Sorry to hear you're not doing well on the aza, are you getting bloodwork to check that your body can handle the azathioprine? Are you taking the 100 mg all at once? Did the IBD nurse suggest splitting your dose (50 in the AM 50 at night)? did she suggest moving up by only another 25 mg for a week, or 2, then try again to move up to 100? Just a few more things to think about and possibly run by the nurse.
It does take 3 - 6 months for the aza to kick in (took 4 for my son), so it is surprising that you are supposed to be off the pred in 10 days time.
Hope things get sorted for you soon.

 

[art_nj]

I was on Lialda and 6MP for Crohns Colitis. The Lialda didn't work for me on it's own, my doc had to add the 6MP and that's when I started feeling better. I eventally had to be bumped up on the 6MP because it would stop helping after a few months. Each time I got bumped up, I felt better again...for a while. Eventually it stopped working and I couldn't take any higher dose of 6MP, so now I'm going to give Remicade a try. For a while though I did good on Lialda & 6MP and I didn't have any major noticable side effects. I hope you find a combo that works for you. It can be very frustrating taking meds and not feeling better or feeling worse!

 

[owllover]

Ive been on the steroids since june when I got diagnosed and really want to come off them. They seem to be taking a 'wait and see' approach with me. I would love to not have to take any medication but I have a feeling that once the steroids are finished I will get all my symptoms back again. The nurse just said to come off it, didnt even suggest going back down a dose or splitting the dose. She said to try it again in a few weeks time but Id think Id just have the same reaction? I did have bloods done and been going weekly with everything being normal.
Im going away for a week next week so Ill give it a week and see how I go. At the moment the steroids have worked, Im going 'normally' and feel a lot better than I did. Maybe when I see the Dr they will try me with something else depending on how I am by then. Thanks for your replys.

 

[scottmyster]

HI owllover, i've had crohns's for 21 years now and i am having a flare up i was on 40mg of predisone a day for a month then tapering down by one every 7 days. i don't know how much predisone you were on or a period of time. but usual regime is taper by one every 7 days by one. if you come off it altogether and just stop you will have side effects even a nurse or gp. should know that.If they don't then they are idiots you can call your pharmacist and they will tell you the same thing. tapering in 10 day is too soon. Please contact you GP asap and tell him what the (ibd) nurse said. she's a idiot too. you will flare up again it's to early!. keep us posted. best wishes.

scott

 

[soretum]

Hi Owllover, we have the same story! I was diagnosed in June with severe chron's colitis, finished pred on Thursdsay, have been on aza for 2 weeks....asked him what happens between now and when aza hopefully starts to work ie; in a few months time, he said that'll we have to accept I wont be 'covered' for a while and gave me a prescription for a gazillion prednisone in case I need them!
So far I'm feeling Okish off the pred but feel as though I'm on a knife edge, I know that the inflammation isn't 100% gone, probably lucky if it's 50% gone....feels great to be off the pred but am worried about getting sick again, and REALLY worried I'll have to start taking the pred again. So far the aza is ok, no side effects, I started on 50mg and went up 50 mg every 3 days until I was at 200mg which seems like a fast increase compared to other folk around here. So far so good though so fingers crossed. He said that with my disease he would like to give me humira but cant get finding for it unless the aza fails or i cant tolerate it

 

[owllover]

We do have the same story! I would have finished the pred this week but I had a bit of bleeding midway through so they told me to stay on 4 a day for an extra week. Just want to be off the pred now, gaining weight is my main reason, im not a skinny person and seeing my clothes getting tighter is getting me down.
They must deal with this all the time so Im going to give the nurses the benefit of the doubt. I think they think that I will ring them if I start to have big problems again before I see my Dr and then they will move my appointment forward.

Just to clarify Ive been told to stop taking the Azathioprine not the Pred, Ive been on the Pred since June and tapered like you are supposed to.

 

[soretum]

same same, I ended up on it for a couple of extra weeks too at 20mg and it was only in the last 2 or 3 weeks I started to put weight on....I lost 9kg total but could have done with losing double that, have put about 3 or 4 back on....cant wait to get rid of my moonface and big droopy chin.
I've been taking my aza at night and haven't had any trouble so far...just been really, really tired but that could just be my body adjusting to no steroids

 

[owllover]

Yeah thats the same with me Ive only started to put weight on the last couple of weeks. Ive never had a double chin until now! I lost 2 stone altogether but that just made my bmi at 24.9 so any weight gain will make me overweight again.
Im starting to think they were quick to stop the Azathioprine when everyones suggested different ways of taking it. Ill leave it for now though and discuss it with my Dr or ring if I need to.