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Ulcerative Colitis
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Posted 9/7/2014 5:27 PM (GMT 0)
Long time no see, i hope everyone is doing well :)
Anyway to cut long story short, i finally got off those blasted steroids then i felt i was getting ill again, this was of course caused by the mezavant. So i stopped taking them and the nurse wrote me a prescription for Asacol i think. i never went to get this because i was so scared i would get the same reaction that i did with the mezavant. Fast forward to now, i was doing pretty well off all meds, i did see the gi 2 weeks ago and he said if i was doing fine off medication then he wouldn't put me on anything (don't give me that "You shouldn't come off your medication" speech, i thought he was going to put me on something). Ironically now i've flared, this couldn't happen at a worse time i'm due to start uni on the 23rd. The thing is i really REALLY do not want to be put on steroid again, messed me up so much physically and mentally that i'm embarrassed to admit.
Going to try see the gp tomorrow, have no idea if i'll get to see the gi due to the long wait on the nhs. Just thinking what medication is next? I'm waay to scared to try anything mesalamine, which really leaves me in a pickle.

Not too sure if this is a question or just a chance to complain, but any kind of response is welcome. Thank you :)
Posted 9/7/2014 5:50 PM (GMT 0)
Hey next for you will be imuran/azithiroprine. I started with mezavant worked well for a while but then got told to reduce it which lead to a bad flare. Imuran is pretty good sounds scary if you read up on it but it's your next step.
I'm waiting for my next appt on the nhs too, 6 weeks which is pants!
Try rectal meds if you haven't already!
Rage
Posted 9/7/2014 6:09 PM (GMT 0)
Rage- Urg, they do sound scary, but i am desperate, so i'll see how things go. I was thinking about rectal meds, suppose the only one i'll try again is cortifoam although i'm not to sure if it will have the same effect as taking the tablet. But thank you for the response :)
Posted 9/7/2014 6:14 PM (GMT 0)
I'm confused. It sounds like you were on mezavant and doing fine until you got off the steroids and then when you got worse you blamed the mezavant when it was probably getting off the steroids which made you worse, not the mezavant. If you didn't think mezavant was good for you then why were you on it in the first place? What dosage were you on? I'm thinking you weren't on a high enough dosage so when the steroids were tapered off your too low of a dose of the mezavant wasn't enough to keep you in remission and then you made things worse by getting off that altogether. What makes you blame the mezavant?
Posted 9/7/2014 6:31 PM (GMT 0)
Yes i know thats how it looks, been pretty hard convincing otherwise, when i took it i would break out in a rash my hair was failing out worse, had convolutions, tremors and twitches (again could of been the steroids) that were considerable worse after i took them. I was on the highest dose for 4 months then advised to taper them 2 weeks after finishing the steroids, but i quit them before this. The nurse thinks the steroids had a play in it too, but she also said that the steroids could have masked the reaction from the mezavant, she told me that if i felt better off them not to go back on.
Again could definitely been the pred, but i'm too chicken to try
Posted 9/7/2014 7:16 PM (GMT 0)
From my experience of mezavant it's pretty side affect free but the only way you will know is to try again then at least you can say for certain then.
We get told our max dose is 4.8 grams 4 pills. I personally take another 2 on top of this.
Your gp won't be able to help much other than write you a prescription. They tend to not know much about most things just a little about everything.
If your really bad just go to a&e they sort you out quicker.
Rage
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