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How much prednisone can you take?

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Posted 11/6/2019 10:53 PM (GMT -5)
Wondering if I should go up to 60 mg. Really scares me to even think about that because in the past I have had bad temporary mental health side effects even from being on 40 mg for 3 weeks in a row. And does prednisone always lose its effectiveness over time and with repeated courses?

I already have a call into my doctor.
Posted 11/6/2019 10:58 PM (GMT -5)
Aren't you in a mild flare? If it's mild I would definitely stay at 40mg. I personally haven't gone over 40mg for a flare-up. I do think I was on more when I was hospitalized for sepsis but I don't remember the details. I am sure many people start at 60mg when things are severe. Hopefully, you hear from your GI soon so you can get direction. At a certain point, I decided anything was better than steroids and I had surgery. I was so fat, angry and uncomfortable with myself while on them. I knew I needed another solution,
Posted 11/6/2019 11:00 PM (GMT -5)
No, it felt pretty severe. I've been on 50 mg for 9 days. I'm a ton better than I was but still in pain and bleeding. Starting at 40 mg doesn't help me anymore.

The only direction they gave me was "if I'm not ready to taper that I can wait a week." That was before I started bleeding again but I asked if I should taper while still having symptoms. I left another message today. Anyway, thanks. Surgery scares me a lot.
Posted 11/6/2019 11:10 PM (GMT -5)
I am sure they will give you the okay for 60mg. I'd give them another call in the morning and ask. You're far from surgery, and I agree, it's a scary thought. I was more scared than anyone, and I fought it until I was literally broken mentally and physically. I hit a point where I knew my life was going nowhere good with UC/steroids in it and I needed a change. Life with a j-pouch isn't perfect, but really, overall, the time I spend worried about my health is greatly decreased, the amount of money I spend is nearly zero too! It's so much easier for me. It's different for everyone, so no one can really give you a pep-talk with any type of guarantee. All I know is that my pouch has made my life better, it's made me more capable, and more confident. I also got my petite figure back, something that disappeared with my steroid-use. I feel like my life with UC was bad, and I was a shell of who I am now, and who I was before I had UC. I lost a lot of time. I wouldn't worry though, you will find something that works for you, just don't spend too many years searching. I regret wasting all that time. 10 years gone!!!! Now I am older and living so much better then I did when I was "young".

Did they do stool tests?
Posted 11/6/2019 11:19 PM (GMT -5)
I'm so glad you had the surgery and had a positive experience with it. I read your story you posted about it. I've been researching it a bit more lately. I hate the weight I've gained, too. And I'm becoming increasingly worried about bone health. I'm taking calcium and Vit. D now so hopefully that will help some. I read some studies saying that should help. I want to be able to run again. I just wish surgery didn't pose so many potential other issues along with it. But I guess if I eventually have to get it done, then I will do it and live with whatever happens. Guess we have no other choice, really.

Yeah, c diff. was negative. They didn't tell me the calprotectin results yet (dealing with his nurses is sometimes fruitless and frustrating). They also told me my Remi levels and antibodies test is still pending. It's been over a week and their online portal tells me the results are in but doesn't say what they are, so that's a little odd. At least I have an appt with him the 18th. Sorry to complain so much. I know it could be worse.
Posted 11/6/2019 11:30 PM (GMT -5)
The calprotectin tends to take longer, but that's good about the c diff. Try to stay calm. You have a lot of options. I wouldn't worry about surgery yet, though it's smart to be informed. If it comes to it you will cross that bridge and hope for the best, but it's unlikely it will so I wouldn't worry. Take things one day at a time. Don't forget to keep using your rectal meds. Hit it with everything you've got. Maybe you can get in sooner if things are not improving. My GI used to get me in early, or after hours if I needed it. They can usually accommodate a patient who needs it. 9 days isn't that long. I've had it take longer when things were in bad shape. Think positive and ask about going higher. There is also the option of going to the hospital for IV steroids, or cycosporine if things really don't respond, but the fact that you're seeing improvement is a great sign.
Posted 11/6/2019 11:50 PM (GMT -5)
Thanks. I was improving but now I'm getting worse again. Kinda feels like when I had campylobacter in 2016. I might ask them to test me for that. I did get a salad at a pizza restaurant that had probably been sitting there for an hour because I was late picking it up right before this all went down. Maybe it's just wishful thinking that "all" I need are strong antibiotics. Lol.
Posted 11/7/2019 7:40 AM (GMT -5)
I did ok on 40mg and below, usually. 50mg I only did for a few days...

On my way to and from 60mg. Which I did for a few days. Briefly. In a horrible flare. A couple of months before surgery. And it was a nightmare for me. Prednisone never really bothered me at lower doses but that 60mg was a nuke. I got panic attacks and the shakes. Basically I felt like I had smoked a 55 gallon trash bag full of weed at the Fraternal Order of Police Christmas Ball. In Utah.
Posted 11/7/2019 9:26 AM (GMT -5)
Lol. Yeah, I'm worried about that. Years ago, I started getting suicidal thoughts once when a doctor had me on 40 mg for 3 weeks before tapering. And I went nuts while on IV steroids in the hospital for just 2 or 3 days. Could not stop crying and basically had a panic attack in the hospital and was sobbing uncontrollably. I had a lot of seriously horrible stress in my life then too though from an abusive relationship. Wrote my doctor a message last night telling him all this, asking what to do and asking for more Tramadol so that I can at least function and get some sleep. I hope he writes me back himself. I feel like I've seen people post about being on 60 mg and even 80 mg here before. So far, I'm fine on the 50 mg. I don't even feel like I have extra energy or anything. I'm still sleeping mostly fine. I guess maybe we need those Remi results before making a good plan forward.

I can't hold in my enemas currently and I was way worse the day after I tried so I haven't been doing them. I usually dont when Im on high dose prednisone.
Posted 11/7/2019 10:14 AM (GMT -5)
I can't even imagine 80mg. The entire 60mg episode was one of the things that finally tripped my decision on the surgery.

Hope the doc comes through for you. Those are tough days. Remicade was good for me, once I got on it. That one and Humira were both good years. Hopefully it will be the one for you.

Keep your chin up. Tomorrow will be better.
Posted 11/7/2019 11:33 AM (GMT -5)
Thanks, Andy! I actually feel fine so far today. I did go ahead and take an extra prednisone tablet though and took 2 Tramadol last night before bed. I can't imagine 80 mg either. How is your recovery going?
Posted 11/7/2019 11:42 AM (GMT -5)
I think you just need to give it some time. You will start to improve soon. Do you have foam enemas or suppositories you could try? Those can be easier to retain, but you're right, once the prednisone is working, you will hopefully be okay without too much additional butt torture. I'd request another stool test if you're worried something may have been missed, sometimes there are false negatives. Do you have sleeping pills? Those are essential for me when I am on pred. I've had to go to the extent of seeing a psychiatrist while on pred to get medication to mellow me out. I was way too full of rage on that drug.
Posted 11/7/2019 11:57 AM (GMT -5)
Thank you. No, I've never tried foam enemas. Do they have foam mesalamine enemas in the U.S.? The suppositories never did anything for me. I asked him to test me for campylobacter. It's a long-shot but that was the source of my reoccurring misery for months back in 2016 so may as well rule it out. I use Benadryl and I do have some Remeron that I use once in a while if I really need sleep (it knocks you out for like 10 or more hours though and makes me groggy the next day). I have a small amount of Xanax left but the doctors around here don't like to prescribe it anymore (even the psychiatrist I went to see would give out klonopin but not Xanax despite me having been on the same low dose for years). Thanks for the suggestions!
Posted 11/7/2019 12:06 PM (GMT -5)
I don’t know about foam enemas — but there’s steroid foam. I’ve used Uceris foam quite a bit and find it rather soothing. It’s a high pressure canister so really shoots up there pretty far.
Posted 11/7/2019 12:11 PM (GMT -5)
Ok, thanks. Maybe I'll ask for that too. I used the steroid liquid enemas years ago. It worked amazingly the first time but the second flare I used it for, it made me worse. Maybe the foam would be better. I'm so jealous of your remission on entyvio! I think I'm going to ask to switch from Delzicol to Lialda or something where I'm not taking 12 pills a day, too. My doctor asked me if I wanted to do that in the past but I didn't want to rock the boat. Now that the Delzicol is obviously not helping, I may as well switch. How do they pick which one...Apriso, Lialda, Asacol HD, etc?
Posted 11/7/2019 12:36 PM (GMT -5)
>How much prednisone can you take?
The maximum oral dose of prednisone they will give us is 60-80 mgs a day. Anything above that, you are talking IV solumedrol, given as hospital in-patient with nurse observation.
Posted 11/7/2019 1:09 PM (GMT -5)

Sara14 said...
Thanks, Andy! I actually feel fine so far today. I did go ahead and take an extra prednisone tablet though and took 2 Tramadol last night before bed. I can't imagine 80 mg either. How is your recovery going?

I'm sure my GI guy would kill me if he knew, but there might have been one or two extra Prednisone tablets over my years. Glad you got your head above water smile

I'm doing well. Went back to work Monday and am functioning. Three days at work helped a lot with my confidence.
Sitting here and being afraid of re-engaging was starting to mess with my head. I proved I am still me. But hit a wall yesterday afternoon and woke up this morning to a little bleeding at one of the surgical sites. I think I twisted it in my sleep. Decided to take a day. Everyone keeps telling me to take the time if I need it, so I did.

Got the diet down and am now itching to get back to working out, but I'm weeks away from that.

Still wrapping my head around the whole ostomy though. Some days I'm all over it. Some days it wins. But there is no doubt whatsoever that I feel much, much better. I'm not UC sick anymore which still surprises me at times. Tug of war between those two things. Feel good and healthy, but... bag.

Day at a time, so they say.
Posted 11/7/2019 1:39 PM (GMT -5)

iPoop said...
>How much prednisone can you take?
The maximum oral dose of prednisone they will give us is 60-80 mgs a day. Anything above that, you are talking IV solumedrol, given as hospital in-patient with nurse observation.

Thank you. That's what I thought.

Andy: I'm glad you're able to take a day off. I can imagine how hard it would be adjusting to having an ostomy. It sounds like you are being very brave and staying as positive as possible, which is great to hear. I imagine it would be a very emotional transition to go through.
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