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Trying to Understand: Steroids, 5ASAs, Immunosupressants

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Ulcerative Colitis
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Posted 12/16/2011 10:51 PM (GMT 0)
Hi Everyone,

Met with my GI yesterday afternoon. He's never been very helpful or informative and mostly just asks what I want to try next. I am trying to figure out my next steps so I can call him back and tell him what prescriptions I need. (Isn't that backwards?)

Long story short: Asacol put me in bed for 5 days, but provided about 4 days of relief (normal BMs) once I stopped taking it. Lialda, and Apriso appear to do nothing for me. The only drug that has helped so far is prednisone. GI suggested maybe adding Imuran into the mix. But I am hesitant to take that step because of the possible side-affects.

I'm trying to understand the purpose of prednisone vs imuran. As far as I can tell, neither of them do anything to actually heal the inflammation, they only mask the symptoms, allowing you to live life while giving the 5ASAs time to knock out some of the inflammation. Is that correct?

If that is the case... why would you ever need to take imuran over prednisone? I understand that prednisone has some pretty serious long-term affects, but imuran's seem worse. Am I missing something here?
Posted 12/16/2011 11:36 PM (GMT 0)
Have you used any rectal meds as of yet?

q
Posted 12/17/2011 4:48 AM (GMT 0)
Hi Tensai-

Prednisone is a steroid that helps calm inflammation which is what colitis is- inflamed colon with ulcers. The problem is that Prednisone is meant for short term use- you don't want to use it long term as it has so many other side effects- sleep disruption, weight gain, irritablity, moon face etc

Imuran can be used long term and stops your own immune system from attacking your colon causing inflammation. Imuran is much better to use to keep your colitis in remission.

Many times when in a flare you will need to start off with Prednisone and Imuran at the same time and as the Imuran kicks in you can taper the prednisone.

This was our experience- my daughter was not able to tolerate mesalamines and prednisone did help but not good to stay on long term so we put her on 6-MP ( same as Imuran) and as that kicked in we got her off Prednisone and she has been able to stay in remission on 6-MP alone with no side effects and is doing really well-

It is very hard to understand but it is important to get the inflamation addressed so your colits does not spread or get worse-

You should also see about starting VSL#3 which is a probiotic for colitis and we have had terrific success using it as well- we take it every day.
Posted 12/17/2011 5:56 AM (GMT 0)
@quincy: I know you've suggested rectal meds before, I'm considering asking my GI for a script for rowasa, but as of yet I haven't used any. I am pretty convinced its a good idea now though. Maybe that is the next step.

@IBDISTHEPITS: Thank you for the explanation. I'm very glad to hear that your daughter is doing well. I've been letting myself get down about this whole colitis thing a lot lately, but I can't even imagine how much harder it would be to watch my young children go through this.

Looks like I was wrong about both prednisone and imuran. I really thought they were only used to cover symptoms while trying to heal, more like cold medicines.

Is it common to take both imuran and a mesalamine drug? My GI was suggesting I start the imuran and stay on the apriso to see if that keeps things in check.

As far as side affects of imuran... how long do people tend to stay on imuran? Is it a life-time solution to colitis? Or do you just take it long enough to get into remission and then use something like VSL#3 to maintain remission?

Sorry, I'm clueless. As I said, my doctor does not offer a whole lot of explanation about anything. I usually don't know the questions to ask up front and there is a bit of a language barrier too. Good times. Thanks again!
Posted 12/17/2011 5:08 PM (GMT 0)
Is the Apriso working? If it is not you can try adding in the Rowasa or if you feel like you are still inflamed and not in remission you can add in the Imuran. Not sure how often one uses a 5-ASA with Imuran but you can def use the enemas and Imuran together.
Adding in the VSL#3 or any probiotic is just a good idea and seems to help a lot of people. Are you able to find a doctor that you like better and is more helpful?

As far as staying on meds once you are in a solid remission one usually keeps taking their meds for at least several years-
if the meds calmed the inflammation and symptoms and life resumes a normalcy- why would one suddenly stop the meds??
Wouldn't the symptoms come roaring back- it seems that this is what happens.

Now I have been told after about 5 years it is time to start thinking about weaning and see what happens but I am not their
yet...anyways think of it as trying to find a normal existence with the meds- if you did not have to suffer any UC symptoms and life could be what it used to be- no interruptions, no symptoms- that is the goal of treatment.
Posted 12/17/2011 5:59 PM (GMT 0)
tensai - you should talk to your GI about Rowasa. I followed the advice of many on this forum & introduced it while tapering off pred. It's helped...unfortunately, not enough in my case but it's certainly worth a try. It's really not a big deal to do, either....

Like you, I'm on the verge of Imuran. Based on previous discussions with my own doc, it's a med you'll always take, provided it remains effective & you tolerate it well.
Posted 12/17/2011 6:42 PM (GMT 0)
Ishiman, do yourself a favor and find a GI who can actually give you information, good feedback and medical advice. I agree with the posters before me - rectal meds are always important, finding a solution that doesn't include prednisone is paramount.
Posted 12/18/2011 8:08 PM (GMT 0)
I had bad reaction to Asacol too. One dose left me bed ridden for the day! Now THAT was scary!!! rectal med did ok for a while. I think my liner symptoms were left over damage from the active colitis. I found a bowel rest diet gave my colon time to heal. I'm just starting solid foods again and it going well.

Seems like every GI has a limited tool box. There's more options out there. I tend to mix Holistic with Traditional to find the right combo. Right now I'm taper off Prednisone. Then I'll taper off Entocort which is another steroid. Next I'll get off Apriso. I want to see if the Low Dose Naltrexone (LDN) is actually working. It's hard to tell when you're on so many different things!

There's also Budesonide enema/suppositories made at a compounding pharmacy. LDN also made at a compounding pharmacy has also helped many but not many GI know about it. Mostly Naturalpath Doctors prescribe it. You can try calling Irmat Pharmacy http://www.irmatpharmacy.com/ in NY, NY and ask for a doctor who prescribes it in you're area. That's how I got it. Best to get it at Irmat or Skips http://www.skipspharmacy.com/ in Boca Raton, FL as they make it right.

Sometimes you just have to spend time doing your own research and go to support groups to learn. I would personally try and stay away from the immuospressants and Remicade as much as possible...these are the last resort. I heard Remicade only works for an avg of 5 years. After that...then what? LDN tend to never stop working and there hardly any side effects. It's the safest of them all and may be effective for you. Won't know unless you try.
Posted 12/19/2011 2:22 AM (GMT 0)
Thanks everyone for the input, I definitely have some options to consider actually taking my next step...

@IBDISTHEPITS: I have no idea if the apriso is working. How can I tell while on the prednisone? My GI told me to up my pred dosage to 30mg and re-start my taper, so I'm guess the only way to see if aprizo is working is to continue the taper and hope I stay in remission... once I get into remission that is.

I'll look into the rowasa more. I don't know that it is time to move on to Imuran yet, but if the apriso has failed then... we'll see. So far mesalamines have done nothing positive for me at all. But I'm still hoping.

Thanks!
Posted 12/19/2011 6:52 AM (GMT 0)
I miss how the apriso would have failed if you're not treating from both ends...
I would suggest you get on the Rowasa and continue with the Apriso before making changes as of yet.

q
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