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Advice on Steroids

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Ulcerative Colitis
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Posted 9/29/2014 3:17 AM (GMT -5)
Hello people, may God give us all health; Amen!

I come today with a question.

I suffer from Mild to Moderate Non Specific Colitis (patchy) which could be called Mild Chrohn's also. Since the initial 2007 start of this I have had two flare up - once in 2009 and now - the symptoms are as follows:

2-3 BM's times a day, no diarrhea, mild urgency. These are usually triggered by anxiety caused by my bleeding piles. That's as bad as it gets, thanks God.

Right now my symptoms are normal, with about 1-2 BM's a day; no blood, normal stools but with some loose stools at the end of the BM. No Diarrhea.

My GI at St Marks in London says that we wants to put me on Steroids to get this under control - he is saying this as my Fecal Calprotectin the last time we checked was 600, and before that 900. I will have another one this month to check it again. God willing it's gone down further. He says the Pentasa only therapy won't be doing much to the Colitis and active colitis needs to be tackled.

My issue is I don't want to take start taking steroids with my mild symptoms, but do want to get into clinical remission. Does anyone have any advice on what is a "mild steroid" and one that isn't as addictive? I don't want to make things worse as right now my life is very easily managing Colitis.

Any help much appreciated.
Posted 9/29/2014 4:59 AM (GMT -5)
With colitis or crohn's there is only two kind of steroids. One is prednisone/prednisolone (never figured out the difference) and budesonide. Since yours is patchy, it might be crohn's. Therefore, budesonide may be the first choice since it's more effective in crohn's than colitis.
Posted 9/29/2014 6:38 AM (GMT -5)
So Entocort - the medical secretary just told me that before steroids there are other drugs I can take - does anyone know where I can view them and which might be best for right sides patchy colitis with no Granuloma?
Posted 9/29/2014 6:46 AM (GMT -5)
What about steroid enemas? They do the trick, and are less scary than oral steroids. I've been on them for a while and have had no side effects like I have with oral pred. Only 5% absorption into the bloodstream.

Also, ST MARKS BUDDIES WOOOOOOOOO!
Posted 9/29/2014 7:31 AM (GMT -5)
But my colitis is on the right side of my colon and it may not reach?
Posted 9/29/2014 8:33 AM (GMT -5)
Entocort would be a good choice for right sided disease.

How much Pentasa are you taking every day?
Posted 9/29/2014 12:21 PM (GMT -5)
4g a day right now - and you're right Entocort maybe - although the doc wants to try non steroids first He says 5ASA is overrated for right sided disease.
Posted 9/29/2014 12:45 PM (GMT -5)
5ASA may be overrated for Crohn's in general. What approach does your DR want to take?
Posted 10/5/2014 11:37 PM (GMT -5)
We need to check the Fecal Calprotectin first. That's my main issue. Generally feeling fine with no D but an excessively high FC score.

If its high again turn maybe I need to change the Pentasa.
Posted 10/6/2014 6:28 AM (GMT -5)
Well with the corticosteroids you want to wait until you really have to use those (symptoms are out of control or headed that way). Corticosteroids are like Prednisone, unless you get bad enough to go into the hospital then they'll fill you up with Solu Medrol. I've been through this a lot so I probably know as much as my GI does on some things (that and being an analyst myself)! I have to be on low dose Valium to take those drugs as I am on this stage right now after this 4 year flare that is just messing with me bad. Now if he thinks if you're heading into a flare he'll put on you on steroids and start you on another drug that you keep taking, but you don't keep taking the steroids after so long.

Entocort sounds like a good option but probably not unless other things aren't working - sounds like you just need to find that maintenance drug that works for you - like the 5ASA or mesalamine drugs like Lialda. This is your step I think -- but you and your Dr. should make that call.

If those do not work, usually you move on to something like 6MP (purinethol) or Imuran.

There's not much from there other than the powerful and sometimes expensive biologics. Next up after all of those is your Remicade (usually too expensive now that home use products are available) and cheaper / stuff you take at home like Humira and Simponi. I am on Simponi now (just started!).

Last thing is surgery or hold out for the next new treatment coming down the research pipeline - which is what I continue to do so long as my life isn't totally unlivable like this (yeah with all that's going on and my age and I can still work and enjoy my life enough) no surgery for me.
Posted 10/6/2014 10:31 PM (GMT -5)
Steroids ruin your body. You end up with permanent red stretch marks on you body. They make my cry every time I see them in the mirror
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