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Posted 10/13/2015 1:46 PM (GMT 0)
To those who take or took Prednisone, how much did you take? I feel like I am on a much higher dosage than everyone else. I started off at 80 mg, tapered to 70, and now I am at 60 mg of Prednisone everyday. I keep seeing comments and threads about people on 30/20/10. Anyone else here take 60/70/80, and if so, for how long were you taking large amounts? I've been taking Prednisone for about a month now.
Posted 10/13/2015 2:05 PM (GMT 0)
Thats an insane amount to start you off at. Did you have severe inflammation? Have you ever taken them before?
Posted 10/13/2015 2:12 PM (GMT 0)

Marauder93 said...
Thats an insane amount to start you off at. Did you have severe inflammation? Have you ever taken them before?

No. When I was in the hospital they told me I had pancolitis and it was fully inflammed.(I do not know if this is relevant, but in the documentation at my GI they only list it as UC and not pan. I don't know if Pan goes away or what the situation is with that). Since I have gotten out of the hospital, while I am still flaring, I personally don't think it is nearly as bad as it was when I was first hospitalized. This was my first hospital stint pertaining to UC and the first time I've taken anything other than Apriso and Uceris.

Its why I was curious as to why I am taking so much more than everyone else (from what I can see).

Right now I am taking
60 mg of Prednisone (40 in the morning, two in the afternoon).
1.5mg of Apriso
60 mg of Dicyclomine
16 mg Ondansteron

And every two weeks I take Humira (I did a super dose 3 weeks ago, two injections last week, and then every two weeks I take one).

I mean, does height/weight have any effect on this? I am experiencing a lot of the side effects of pred (sore/aches in bones, moonface, acne on the top of my head, discolored tongue, palpitations etc). I just hope I was not prescribed too much.

Post Edited (MarsRover) : 10/13/2015 8:16:59 AM (GMT-6)

Posted 10/13/2015 2:26 PM (GMT 0)
Usually if you are hospitalized they will give you 40-60 mg if IV methylprednisone and then switch you over the 40 mg oral prednisone and taper from there. I cant see why on earth they would give you 80 mg. Thats not standard of care even for fulminant disease.

Also, pancolitis just means your whole colon is affected by UC. Its just a descriptive term.
Posted 10/13/2015 2:31 PM (GMT 0)
That's the highest oral dose of prednisone that I've heard of. 40mgs is a typical flare dose. Much above that needs to given intravenously and monitored by a nurse.

How long have you been on humira? Are you through the initial loading doses yet?
Posted 10/13/2015 2:32 PM (GMT 0)
I got more than that in iv when I was first flaring badly
It's possible you were on very high doses in the hospital so they had to continue your taper at such a high dose but ask your doctor to be sure.
Why are you only taking 1.5 mg asipraso
I would take max dose
Posted 10/13/2015 2:35 PM (GMT 0)

Dikid said...
I got more than that in iv when I was first flaring badly
It's possible you were on very high doses in the hospital so they had to continue your taper at such a high dose but ask your doctor to be sure.
Why are you only taking 1.5 mg asipraso
I would take max dose

Are you sure you werent on hydrocortisone IV? Thats given at doses >100mg
Posted 10/13/2015 3:00 PM (GMT 0)
Regarding Apriso; I don't know. My doctor told me to take that amount. 4 tablets, 1.5 mg. That is just what he told me to do.

Regards to Humira, I have only taken it twice. I did the first superdose a few weeks ago (the four epi pens), last week I did two of the Humira shots, and next week I take a single dose, and supposedly I will be doing a single dose every two weeks indefinitely

When I was in the hospital, I had saline running through me 24/7 (literally), and I know daily they would give me a variety of IV steroids and other medications. I am not sure on the amounts or what was specifically given to me.
Posted 10/13/2015 3:10 PM (GMT 0)
Careful, Apriso is dosed very differently than other meslamine pills (lialda, asacol hd, etc). Apriso doses are always smaller.
Posted 10/13/2015 3:32 PM (GMT 0)
Yes marauder I was initially on hydrocortisone
But I was getting 100 mg 6 times a day which is equivalent to 120 mg prednisone.
That was per the hospitalist my former GI made the switch to solu medrol
That hospital was not the best hospital for GI
I ended up being transferred to a much better hospital.

Mars rover
If you check your discharge summary it might say what you were getting. When you are at a very high dose you can taper faster. you will have to slow down when you get lower.
Posted 10/13/2015 3:54 PM (GMT 0)
80 mg is extraordinarily high. Even at my worst pancolitis flares, I was given 40 mg of prednisone orally. When my flares were too severe to be controlled by 40 mg of prednisone, I was put on IV steriods as an outpatient or immediately admitted to the hospital.

How are your symptoms currently?
Posted 10/13/2015 5:35 PM (GMT 0)
hi Marsrover !

so what country are you in ? I ask because your care seems substandard imo. As others have said, that is an extremely high dose of Prednisone. You don't say what all your current symptoms are, but you absolutely should be using rectal meds. Something just doesn't seem right with this whole picture. You should try to get it sorted out soon.

Good Luck.
Posted 10/13/2015 5:52 PM (GMT 0)
I wouldn't necessarily say 40 mg oral pred. is the standard. My GI always starts me out on 60 mg regardless of the severity of the flare and it works out fine. I'm not left on that high a dosage for too long before starting to taper. When I was hospitalized, for several days I was on 120 mg IV then reduced to 80 mg IV and discharged with 60 mg oral pred. I did not have toxic megacolon or fulminant colitis, but I was in a severe enough flare that surgery was discussed.
Posted 10/13/2015 5:59 PM (GMT 0)
Just an aside, my side effects weren't any worse on 120 mg than they were at the lower doses. I have the same side effects no matter what amount I'm on and some of them I never got. I think our reactions to pred are very individual. And i was not at a substandard hospital, but a rather good one and I received high dosages. At least in the hospital they can monitor everything. From what I understand from my GI, there isn't too much difference between 60 mg and 80 mg and it sounds like you'll be tapering down quickly off the 80.
Posted 10/13/2015 6:54 PM (GMT 0)
Yeah, that is way too much. Normal taper schedule for me (and most I've seen on here) is 40/30/20/10.
Posted 10/13/2015 7:13 PM (GMT 0)

RockerGirl said...
I wouldn't necessarily say 40 mg oral pred. is the standard. My GI always starts me out on 60 mg regardless of the severity of the flare and it works out fine. .

The research has shown theres no advantage to using 60 mg over 40 mg, so 40 mg IS the standard
Posted 10/13/2015 7:25 PM (GMT 0)

Marauder93 said...

RockerGirl said...
I wouldn't necessarily say 40 mg oral pred. is the standard. My GI always starts me out on 60 mg regardless of the severity of the flare and it works out fine. .

The research has shown theres no advantage to using 60 mg over 40 mg, so 40 mg IS the standard

Agreed; I have had at least two GI's tell me the risks far outweigh the benefit (if any) of upping the dosage over 40mg.
Posted 10/13/2015 7:33 PM (GMT 0)

ushippedyourpants? said...
hi Marsrover !

so what country are you in ? I ask because your care seems substandard imo. As others have said, that is an extremely high dose of Prednisone. You don't say what all your current symptoms are, but you absolutely should be using rectal meds. Something just doesn't seem right with this whole picture. You should try to get it sorted out soon.

Good Luck.

I'm in the US. If 40-60 is the peak, why would my doctor assign me 80mg? Just odd if thats true.

The trouble I am having right now is trying to distinguish what symptoms are from the UC and what are from the medications. I am still going hitting the bathroom about 7-14 times a day (wide range but often varies on diet and timing on medication), various degrees of solid, occasionally its bloody.

Some of the symptoms, such as lower stomach/intestinal pain, random fatigue, nausea, etc, I am not sure if its coming from the UC, the Pred, or a combination of the two. It seems like a gray area in a lot of respects.
Posted 10/13/2015 11:08 PM (GMT 0)
Well, I trust my GI implicitly being that he has always gotten me out of my flares with no steroid dependency and he saved my colon from being removed. He does 60 mg to start and that is what's worked. And you guys don't know if I would have had the same outcome starting at 40 mg. Being on steroids at high dosages has risks and the same side effects regardless of whether it's 40/60/80.

To the OP, I would call your doctor and ask about the course of treatment if you are concerned. Do you trust your GI? I would definitely ask why he/she started you out at 80 mg vs 60/40 and explain your side effects. I would think you are being monitored anyway since you are on high dosages of pred. At least I hope so. When I was on the high dosages i was going in every 2 weeks to see my GI.
Posted 10/14/2015 12:08 AM (GMT 0)
I'm currently on 60mg of Prednisone, I was diagnosed with a severe case of Pancolitis as well about a month ago and have been fighting it ever since. I will start my weaning process with 40mg in about a week or so.
Posted 10/14/2015 3:29 AM (GMT 0)
MarsRover - If you haven't already, you may want to read this NIH article which directly addresses this topic (in addition to other medications used to treat UC): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780076/

Per the article, "Baron and colleagues reported that 40mg of prednisone was more effective than 20 mg and equally effective as 60 mg, but with fewer side effects...It is from these early studies that the current maximum of prednisone at 40 mg daily for moderate to severe UC originated." Unfortunately, some of the more serious side effects associated with prednisone are not immediately noticeable. If you are on a high dosage of prednisone over a long period of time, it's a good idea to take a calcium supplement to reduce risk of developing osteoporosis.

This article may be a handy reference for you if you decide to speak with your GI. I don't mean to alarm you but prednisone is a serious drug and dosage as well as tapering schedule are very important. Take care.
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