I started what my dr called "a very low dose" of 20mg of Prednisone last Thursday for that AIH part of my diagnosis. I feel Amazing...like fantastic. I know that prednisone is basically the devil and it can have absolutely horrible side effects, especially when used long term. But for now, today, I feel great.
My dr's medical assistant called me today to see how I was doing on "the very low dose". That term makes me think they are going to raise it soon. I have labs due October 4th to see how it is working.
Anyway, I told her I feel great. Yesterday I was very sick but I eat a piece of toast for breakfast and apparently I needed more in my stomach before taking the pills because today I ate more and it is all good.
So while I'm laying here pondering having to take it long term, wondering about bone loss and diabetes,etc... I'm also wondering have any of you ever continued to feel good on Prednisone? Does that happen?
I'm not ravenous. I'm not a raging witch. I have zero appetite. I have more energy, but I can still sleep. The sick pain across my abdomen is gone. My hip doesn't hurt anymore and it has hurt for years. I just feel almost like normal which after having been so sick and tired before feels fantastic, if that makes sense.
I imagine it is working, bringing down the inflammation in my liver, which is why I'm feeling better. I have just read so much very bad stuff about it and I know a lot of the side effects get worse long term or high dose. I'm still quite afraid of it, but absolutely willing to do anything to see this tiny baby grow up. But I'm reaching for a glimmer of hope here maybe, even if it destroys my body, that I can at least feel okay while it does it?
Sorry if this is rambling but I have a lot on my mind and I just need to get it out.
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IAmTheGlue
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I don't have experience with Prednisone but I'm sure the others who do will be posting their experience. Just wanted to send you some encouragement and I am glad that at least for now you are feeling so much better. I'm glad you shared this. Keep hoping!
Hi. I'm glad to hear your feeling better on the prednisone.
I too take prednisone for my AIH diagnosis. I'm now on a lower dose of 10mg a day and have been for the last 8 months. I was told that I will be reviewed every 2 years but possibly be on it life long. My consultant warned me of all the side effects but thankfully some of these side effects don't bother me too much.
At present for me the good effects of prednisone outweigh the negative:-
1. I have much more energy and the nausea has almost gone, it rares up occasionally.
2. I try to be careful about how much I eat as I do agree that prednisone give you a greater appetite.
3. The acne type spots I got when I started prednisone have calmed slightly.
4. I take a calcium tablet to help the fight against the side effects of it thinning my bones.
So all in all I will continue to take the prednisone because I do feel better for it and will try to do all in my power to combat any negative side effects. This is just my experience of prednisone so hope this helps relieve any concerns you have about long term use of the drug.
Hi, I also take longterm prednisone, but 6mg for Polymyalgia Rheumatica my Rheumy wants to add a 'cortisone saver' methotrexate but am awaiting for review next week with my Gastroenterologist for his advice re effects on my liver. Would be intetested to hear from anyone who is on this combination with their Urso, any side effects and alterations to LFT.
Thank you all for your replies . I was advised to take Calcium/D3 to help prevent the bone loss. I do not drink milk. I never have as it grosses me out. But I am faithfully taking my vitamins and calcium so I hope that helps.
Once again, thank you for your insights and support. My dr did go over all the side effects and say that the benefits outweighed the risks so on we go.
I am on ten milligrams a day because of other problems. I will ask the rheumatoid dr if i can stay on it because it is a wonder drug. I have been stage one PBC for over 22 years and age is catching up with me . Th upped my urso to 2000 a day and my levels are the lowest they have been thank God. Yes I went from osteopini to osteoporosis in two years. but I am on prescription strength vitamin d once a week, calcium pills every day, and now once a week generic fisomax....dr is thinking once a year infuson would be better,. we will see. i never took prendisone for anything except asthma or severe joint pain....what a brilliant idea
How great to hear you're feeling better and the prednisone is helping! 🙌
I was on it short term but for my RA. It was wonderful. I remember saying the same thing to my husband....how nice it felt to feel "normal" .... I remember 3 months into my diagnosis saying how I miss the old me.
It's an adjustment for sure but.... You'll get to your new normal..... enjoy feeling good. ❤
Yes it's great! I felt "normal" on it too but I was taken off it as soon as my LFTs came down. Sometimes I long for it because life is a struggle - I only get by. But it's great to know that there's something that works wonders out there for when things get worse. I have had two shorter prednisone treatments after the longer one and they've been such game changers.
Hope you'll be able to reap the benefits of this great drug for as long as you need. As far as I have understood it's the long term use that is problematic.
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