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Anyone ever been on prednisone on a monthly basis?

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Posted 12/31/2017 6:43 AM (GMT 0)
My 17 year old daughter has been dealing with UC for a few years. She's tried Lialda, Uceris, Prednisone and Humira, as well as diet changes. She's currently been taking Lialda for about a year, and Humira for 4 months. Last winter she also caught C diff and ended up getting so sick she was hospitalized for a few days, but it's been months since she tested positive for that. My question is, has anyone ever done Prednisone for a set amount of days every month? Because for everything we've tried, she keeps getting symptomatic. After the hospitalization she only got better on a 6 week Pred taper, and then every 6 weeks or so she starts bleeding and having stomach pain again, and the only thing that helps is a short burst of Prednisone. The doctors want to keep her on the Lialda and Humira, but I don't really see it working, and I feel like it's a lot to be putting in your body for nothing. I know Prednisone isn't good for you, but is 5 days of it every month enough to do real damage? Especially if it's allowing her to keep living her life?
Posted 12/31/2017 6:51 AM (GMT 0)
If there is IBD that can only be managed with pred, it may be time for surgery.

A low dose daily would likely be better than the yo-yo of a larger dose 1 week each month. But it does not sound like a great plan.

I did a low dose of pred for many months rather than try 6mp because of some other medical issues (and concerns) I had. But I had very few side effects. But, since then my diabetes has been less controlled. Pretty sure I made the wrong choice.

You might try uceris every other day - but indefinite steroid use is seldom a solution.

good luck
Posted 12/31/2017 6:15 PM (GMT 0)
For her age and that much steroid, it's not a good thing.

Has she tried any rectal meds at all? At least it might help her to stay off the steroid.

What are her thoughts about surgery?

q
Posted 12/31/2017 6:39 PM (GMT 0)
" 5 days of it every month enough to do real damage?"

Yes, cumulative damage would be substantial over time. Every prednisone pill is bone-wasting and could result in an osteoporosis or osteopenia. Type ii diabetes becomes a lot more likely over time. Glaucoma becomes a lot more likely over time.

We had a regular poster have a hip replaced in his 20's due to prednisone.

Pred is a good emergency rescue medication for infrequent use to recover from severe flares when we're at our absolute worst.
Posted 12/31/2017 7:19 PM (GMT 0)
You have to take the advice of the medical professionals you trust.
Is she going to an IBD center?
Has she received multiple opinions?

There are other options besides humira and Lialda, maybe she would do well on 6mp or imuran, or one of the other biologics. Rectal meds could help. Since she had c diff, I wonder if she would qualify for a fecal transplant, or something alternative along those lines? Has she been checked for Crohn's? Does she respond to antitbiocs?

I personally do not like steroids, they make me feel crazy, but everyone is different. As for as long-term physical health consequences, unfortunately, that is more similar amongst long-term users - bone loss, dental issues, eye problems, high blood pressure, suggestibility to bacterial and fungal infections, thrush, weight gain, skin issues, hormonal imbalances are common... If you use steroids long-term, you will eventually have side effects, and some may be permanent. I do not know how that would go for 5 days a month, but i'd imagine 5 days would turn into 10, then 15, then daily after some time. I was a fat, bloated insomniac with high blood pressure on prednisone. It made me depressed to look in the mirror. I hit a point where anything was better than having any of the drug in my body.
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