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When to give up on Prednisone?

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Ulcerative Colitis
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Posted 2/12/2012 9:43 PM (GMT 0)
I started at 20mg 5 weeks ago and my symptoms got worse so I went to 40mg daily. (20 in the morning and 20 in the evening) My symptoms were slowly getting better but progress was very slow. I stayed at this dosage for 3 weeks. I went from 25+ painful bloody BM to 7 more predictable bloody BM.

7 days ago the doctor suggested taking all 40mg at night. No significant improvement at all--just more side effects (Moon face, gained 7 pounds in 7 days, hair loss, headaches & body aches have all increased).

Now I have been on 40 mg daily for a total of almost 4 weeks and I am wondering if I should keep going or start 6mp or Remicade. Both seem quite scary to me and require a long-term commitment to treatment but I am just wondering if staying on this high dose of Pred is such a good idea.

I have only been on prednisone only once before and that was 7 years ago (diagnosis of mod/severe pancolitis). I started at 60mg and within days the bleeding and multiple BMs were gone. This time the doctor said that the the affected area is much limited (severe proctitis) so he started me on this lower dose.

Is it my age? Why would the prednisone no longer work? Is the dosage wrong? How much longer do I keep on the prednisone? I am still having 5-6 watery, bloody BM a day.

Not sure where to go from here???
Posted 2/12/2012 9:55 PM (GMT 0)
Without knowing how much you weigh, I know 11 year olds who have been on 40mg of pred for a flare. I understand that your GI probably wants to be conservative with pred but that sometimes leads to longer/greater use. The effective dose is 1mg/kilo (if you do weigh 40kg, please ignore this!). If you're in a very severe flare they might tell you go be admitted for IV so that it kicks in faster? But if you're not at the correct dose you might need to go to the 1mg/kilo dose and wait two weeks. Or, if you've had enough then you can try remi or hold on at this dose and try diet, LDN, other alternatives or azathioprine (takes three months approx to kick in). I don't think the fact that you have proctitis should mean you need a lesser dose, since there are people on this board who were pred dependent and had surgery due to proctitis. But it does look like the pred is working though slowly. I would think you needed a higher dose to smack the inflammation down?
Posted 2/12/2012 10:30 PM (GMT 0)
I am 5' 2" and started at 113lbs five weeks ago. My GI laughed that the 60mg dosage he gave me in 2005 was a "manly" dose for a petite woman (I was 100lbs then) but he felt I was so sick that he wanted to make sure that things got rolling quickly so I did not have to stay in the hospital.

Not sure if now at the age of 40 (two children later) that my body is just not working at peak form. I have always been an active mom keeping up with walking and yoga on a weekly basis.

What does prednisone dependency feel like?
Posted 2/12/2012 10:38 PM (GMT 0)
I don't know what it feels like (my daughter has UC) but it's basically where you are dependent on prednisone for "remission" or minimal symptoms and these return when you taper. Eventually it your body needs higher doses to stay in "remission".
It looks like you would need 50mg as your starting dose based on your weight? I guess it depends on if you're going to transition onto a stronger me than ASAs (guessing not) but if you want pred to put you in remission then I think a higher dose? Not a GI of course.
Posted 2/12/2012 11:05 PM (GMT 0)
Why aren't you using mesalamine enemas as well?
Posted 2/12/2012 11:53 PM (GMT 0)
I was using cortifoam twice a day for one month and my symptoms got worse. I introduced mesalamine enemas 5 weeks ago and then after one week I could no longer hold them in. Every few days I try to use either the cortifoam or the nightly enema to try to treat the area but it has been a struggle. I can hold the cortifoam in for 3 hours only and I have been waking up at 4am to release the enema when I do use them. I have always tolerated them very well before. Not sure why the inflammation is so bad that the enemas are difficult to hold now.
Posted 2/13/2012 12:51 AM (GMT 0)
I would talk to the Dr but it is much better to find a med that works for you and stay off the dreaded Prednisone!
Typically when you start 6-MP you are already taking Prednisone and as you wean off the Pred the 6-MP
takes over.

You may not be tolerating the Colazal so it may be time to "step-up" and start 6-MP.

Do you take your VSL3 after you eat a meal? I used to think you should take it on an empty stomach but the GI said maybe after a meal so your stomach acids don't destroy it.

unfortunatley Predsnisone does not always work and that is why people have to "step up" their treatment.

I personally would start with 6-MP and hope that can get you into a solid remission.
Posted 2/13/2012 1:04 AM (GMT 0)
Ibdisthepits,

Did you daughter or husband have any adverse effects to VSL #3? Some people experienced bloating and gas initially. How long have they been taking this probiotic?
Posted 2/13/2012 2:11 AM (GMT 0)
Hi Manhattan Mama

I can very much relate to your situation. I am also 40 and a Mother of 2. I just did a course of Prednisone from Sept to Jan and finally tapered only to start bleeding again. I was dx in 1999 with pancolitis but now it's mainly proctitus. I cannot take any mesalamine and my GI wants me on 6mp. I'm scared to death of it. Right now she has agreed to let me continue hydrocortisone enemas. Adding those might stop the bleeding. It did while I was on Prednisone. Now they are not doing the trick by themselves. I'm only going 1-3x a day formed stool but there is still blood. I like you have only been on Prednisone like 1 or 2x since diagnosis and am wondering why it is not working already. I would have thought that I had not become dependant yet. I'm very nervous and don't know what to do. Message me anytime. I can so relate.
Posted 2/13/2012 2:28 AM (GMT 0)
Hi Seasons21

Sounds like we are in the same boat! Not sure how to send messages to members directly yet.

Are you doing any diet restrictions or taking any other alternative meds? I tried some L-glutamine in a banana/almond shake this morning with chia seeds. Not sure what to expect but I am going to give it a few more days to see if something miraculous happens :)

I am talking to my GI tomorrow to see if I should continue at 40mg for a few more days or try something new.
Posted 2/13/2012 3:55 AM (GMT 0)
My daughter has been on VSL#3 pretty much since diagnosis and I have always felt like it has been helpful for her.
I tend to increase it a bit if it seems things are a little rocky and then I back down.
I don't think she has any negative side effects except that she absolutely hates taking it- texture, flavor- not sure but we have no choice!

My husband used it off and on- I thought it was helping but he decided it wasn't and has backed off a bit- now I make yogurt for him and add it to that.
Posted 2/13/2012 5:08 AM (GMT 0)
If I were on a high dose of prednisone and I wasn't responding, I would start looking for the next steps that I am comfortable with. Speak with your GI and ask for pros and cons about different methods. 6mp can take a while to work whereas something like Remicade can work quickly and potentially get your off Remicade faster but I feel like 6mp has a longer potential for treatment. I have seen a few people that are on Remicade for many years but I've seen quite a few who don't respond to it for very long. One more plus about 6mp is that it's not as expensive as Remicade, for me, this was important because I wasn't sure if I would have insurance continuously and I wouldn't have been able to afford Remicade if I don't have insurance. Some people recommend a higher dose of prednisone to start but prednisone is such an awful drug and it can cause longterm damage to your body, you definitely want to use it minimally if you can. You could also explore antibiotic options or LDN, possibly Fecal transplant...
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