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Prednisone for over a year now... Need help or advice please

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Ulcerative Colitis
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Posted 2/17/2015 2:44 AM (GMT 0)
I have ulcerative colitis and I'm currently on 1.2 grams of Lialda 10 mg of prednisone and 50 mg of 6mp. I was on Humira but got cut off due to insurance issues that I'm currently working on. I need to know if anybody has been on prednisone for as long as I have and if they were finally able to taper off the medicine for good. Anything helps.
Posted 2/17/2015 2:57 AM (GMT 0)
well kevel buddy, that would be a hard question to answer since you haven't told us how long YOU have been on pred smilewinkgrin

welcome abroad butt brethren/sistern !
Posted 2/17/2015 3:08 AM (GMT 0)

juststud said...
well kevel buddy, that would be a hard question to answer since you haven't told us how long YOU have been on pred smilewinkgrin

welcome abroad butt brethren/sistern !

It says it in the title (over a year) tongue
Posted 2/17/2015 3:34 AM (GMT 0)
When were you diagnosed, what was your initial dose, what is the history of your taper? 10 mg Prednisone is quite low but you're right that's a long time! If you could fill us in maybe someone can help. Are you in a flare currently? No one here can help with such limited background. Best.
Posted 2/17/2015 4:07 AM (GMT 0)
i was on for almost two years. but your Lialda is too low, and 6mp generic is almost free
Posted 2/17/2015 5:28 AM (GMT 0)
He / she doesn't seem worried about the cost of 6mp. It's humira they really want and am worried about cost/coverage.

I don't know how long you can stay on it, but you should get some answers here.

Welcome
Posted 2/17/2015 5:35 AM (GMT 0)
Have you done that Humira savings plan thing before? Don't they have one? I know remicade does.
Posted 2/17/2015 6:01 AM (GMT 0)
Are you saying that you are only taking one Lialda per day? That's ridiculous. That's not even a mtnc dose. You should be taking 4 per day so you don't have to be on pred that long. What are your current symptoms?
Posted 2/17/2015 12:17 PM (GMT 0)
Yes, I did a continuous year of prednisone after the flareup from hell. I went from just lialda and rowasa, to 6mp and remicade, and then I was finally able to kick prednisone to the curb.

Keep after your insurance, I hope you get the humira filled quickly. A little thing called medical necessity applies...
Posted 2/17/2015 1:44 PM (GMT 0)
Work on getting off that Pred ASAP. Your body naturally makes about what you are giving it daily...so your adrenal glands are not producing anything to supplement your needs. The longer you go, the harder it is to wake up those glands to start producing again.
New med's should help. Your doc can write an insurance request to speed up a biologic. Remicade has a great financial support program called Remistart. Even more generous this year than last..check it out.
Posted 2/17/2015 2:28 PM (GMT 0)
I was on Pred for about 3 years straight. When you are on that long, it's essential that you taper at a very very very slow pace. Also, try to keep your stress levels as low as possible while you taper off. I always found that high stress levels messed up my taper. I tried all the biologics--Remi, Humira, Simponi and finally Entyvio allowed me to get off Pred.
Posted 2/17/2015 2:34 PM (GMT 0)
I was on Entocort (supposedly fewer and milder side effects) for over two years. I developed osteoporosis, stress fractures, diabetes and osteonecrosis in my shoulder. Remicade finally controlled my beast and let me get off steroids.
Posted 2/18/2015 1:56 AM (GMT 0)
Wow I wasn't expecting all these responses 😄. I really don't know how bad my uc really is. I have formed stool but I get the urgency at least twice a day, no diarrhea for me just mucus occasionally. Don't know if that's a plus. I'm on 4 tablets of lialda. I've tapered on prednisone from 40 mg n I can't finish the taper because I begin to get a flare once I'm ending the taper. Just started 6mp and going to get back on the Humira. Doctor says some patients who approach uc mixing Humira and 6mp together are able to treat it aggressively. Again thanks for the replies.
Posted 2/19/2015 11:12 PM (GMT 0)
That is what Qing Dai is for.
Posted 2/20/2015 12:10 AM (GMT 0)
yes, i was on prednisone for a year and I got off of it. I had to taper VERY slowly, like 1mg every other week or something crazy but eventually, i did get off of it. Take it slow. In the meantime, you should try rectal meds in addition to your current meds. I also bet humira has a copay assistance plan:

/www.humira.com/global/savings-and-co-pay

50mg of 6mp is a low dose depending on your weight and how you metabolize it. You should get checked to see whether you're in the therapeutic range and increase the dose depending. Your symptoms don't sound too bad, maybe rectals could get you to 100% without doing anything too severe.
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