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tell me aboout immunesuppressing drugs

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Ulcerative Colitis
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Posted 1/8/2009 9:01 PM (GMT 0)
pred did nothing for me. doc started me on an enema and I also take nine asacol a day. if the enemas don't help we will talk immune suppressing drugs. what r the like I would like all info good and bad.

I have pancolitis. still having 6 10 stools urges a day may stress related like when I strt thinking about it then I have to go right then.
Posted 1/9/2009 12:46 AM (GMT 0)
it's amazing what happens when we get our minds distracted, I actually start feeling better, then once I focus on my problems and/or this disease I have symptoms. My next step will probably be 6 mps if I don't get better soon and for many they work great w/o side effects (or at least side effects they're not aware of) 6 mps are a strong drug but have been around for years. I have pancolitis too and you can also up the asacol to twelve a day...if tht enema he prescibed is mesalamine and by chance it doesnt work then ask him to try cortifoam as it helped me after rowasa stop working.
Posted 1/9/2009 4:59 AM (GMT 0)
I'm taking 6-MP since almost 6 weeks and so far, I am very happy with it.

Before taking 6-MP, I was on Pred for the first time for almost three months and it didn't do really anything for me. I stopped Pred after being on 6-MP for two weeks. I am in remission now since around 3 weeks, that means I have no symptoms, one or two normal BMs in the morning, no blood, no mucus, no urgency, no pain. A colonoscopy might show still inflammation (gonna schedule my next scope next week), but as long as I don't have symptoms, I don't care.

Anyway, it might be coincidence that I am doing so well, because I only take 6-MP for a short while and it is said, it needs around 3 months to reach its full effect. However, I was always lucky in the past that drugs kicked in way sooner for me than for others.

I have no longer side effects from the 6-MP. The first three weeks, I had a daily headache (bearable, but annoying), slight nausea and spells of sleepiness that were beyond compare. It all had subsided. If it keeps going on like that and 6-MP is really to blame for my well-being, I don't care whether I will lose my hair etc. like quite some people have it after taking it for a longer time. It is so worth it for me - a million times better than suffering through flares and I have this stupid disease for a long long time.

Just make sure that you have your blood taken regularly and that you show up for your blood tests religiously. I went weekly in the first month, now biweekly for January and then once a month unless something suspicious comes up and needs to be tested.

Posted 1/9/2009 5:14 AM (GMT 0)
Thats encouraging Scarlett! : )
Posted 1/9/2009 2:01 PM (GMT 0)
I to am on 6mp and it has been about 10 weeks. I agree with Scarelet about the headaches in the beginning, they were there for me, but bearable and yes keep getting your blood work on schedule. My RBC has been low since I started and my WBC is finally dropping to a low level and I am starting to see the benefits of 6mp after being steriod dependent. Even with the little bit of improvement that I am starting to see it has given my life back. Now I just need to work on my brain that tells me that I should "try" to use the bathroom to avoid an "urgent accident".

I was scared to try it at first, but do not regret it one bit so far.

Posted 1/9/2009 5:03 PM (GMT 0)
My doctor first put me on 6MP as i am steroid dependant and it is supposed to help get you off of prednisone.  I did not feel good on this at all, i had a lot of very bad headaches, nausea, very tired, etc.  After 3 months and constant bloodwork it was found that my liver couldn't tolerate it and was starting to shut down.  He took me off of 6MP and gave me the option of Imuran or Remicade.  Even though Imuran was the sister drug of 6MP it breaks down differently and may not have given my liver problems.  I decided to try that first and so far i feel great.  I do not have any side effects from it at all, i feel really good and all my bloodwork is coming back normal.  Definitely give them a try and if one doesnt work for you certainly try the other as everyone's bodies are different.  He is going to try and taper me off the pred in another month or so and i am really hoping it will work.
Posted 1/9/2009 9:24 PM (GMT 0)
     I've been on 6MP for about five years.  It really doesn't keep me out of flares, but the GI surgeon I went to over the summer told me that my condition could be a lot worse without the 6MP, so who knows.  Only thing I noticed is the thinning of my hair...which I cannot afford..lol.  Just bought a wig...Dolly Parton, look out!
Posted 1/9/2009 11:18 PM (GMT 0)

ErinD said...
My doctor first put me on 6MP as i am steroid dependant and it is supposed to help get you off of prednisone.  I did not feel good on this at all, i had a lot of very bad headaches, nausea, very tired, etc.  After 3 months and constant bloodwork it was found that my liver couldn't tolerate it and was starting to shut down.  He took me off of 6MP and gave me the option of Imuran or Remicade.  Even though Imuran was the sister drug of 6MP it breaks down differently and may not have given my liver problems.  I decided to try that first and so far i feel great.  I do not have any side effects from it at all, i feel really good and all my bloodwork is coming back normal.  Definitely give them a try and if one doesnt work for you certainly try the other as everyone's bodies are different.  He is going to try and taper me off the pred in another month or so and i am really hoping it will work.

Good to know
Posted 1/9/2009 11:36 PM (GMT 0)
I've been on 6MP for about 6 years and it helped me get into and stay in remission throughout all that time. I had some serious stress in early 2008 and I've been in the worst flare ever since, still on 6MP, but I guess it's just not working for me anymore. It was super good while it lasted though! I'd highly recommend it. I didn't have any side effects from it (that I know of!). My hair has been thinning a bit through this bad flare though - I think it's just the illness.
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