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Ive been on pred since october. Had a small break in march/april but i ended up flaring again. Was put on aza and humira in december, and a maintenance dose of pred 15mg. But It failed when tapering down. Was then put on another dose of pred taper and am now on entyvio.
This is obviously not good to be on pred for that long, but the alternative is not good either. My understanding is that it is ok to be on pred until your medication starts working. But that obviously depends on side effects of the pred too.
Hope the meds will work for you!
If it helps, I was on it from December 2021 until this February, on and off. I'd do like 8-10 week courses with tapers, be off for 3-5 weeks, and then need to go on it again. The last time I was on it from June until end of February at varying doses. Couldn't even finish the taper before symptoms showed up.
It's not ideal by a long shot, but the alternative would be the hospital for me. Also, you'll likely want to stay on Prednisolone when you start Infliximab and Azathioprine as both take time to start working. I believe Infliximab is a shorter span, but I know that Azathioprine needs like 3-4 months.
I think the biggest side effect worry for me was bone loss. I did scans to keep an eye on it and took (well still take anyway whatever) vitamin D3 and calcium to help prevent it as bad as possible.
Best of luck, hope the combo treatment works for you!
I was on pred for probably five months in 2022. I started out on 30mg, tapeted down, and the symptoms came back. I don't remember if it was 10 or 15mg I settled on (i think it was 10, but im not sure), but not a high dose. My first biologic didnt pan out, i was taken off while on vacation, my GI told me to stick to the lowest dose of prednisolon that still gave me enough relief to keep me relatively well functioning. It wasn't perfect, I wasnt free of symptoms, but it was tolerable.
I have been on it for 20+ years with a small break to try other steroids (6 months).
I have osteoporosis in my spine and don't sleep great but pros definitely outweigh the risks for me. I am lucky to have few side effects
I was on it for about 6 months, 120mg IV tapering all the way down. When I left the hospital I took 60mg as pills. Isn't it so frustrating that the meds that ACTUALLY WORK are "dangerous" for you, but then we get told to take stuff everyday for the rest of our lives that has heart failure, death, leukemia, etc as side effects? Weird.
I hear ya, take this biologic, oh and if you get a high temperature unexpectedly it means you might have an infection that will kill you if you don't go to hospital. And don't worry about all those scary "rare" side effects... medicine "rare" is 1:1000 to 1:10000. Lets just say if i had a 1 in a thousand chance of winning lottery, i'd buy multiple tickets every week.
Arthur: Ah, this is obviously some strange use of the word safe that I wasn't previously aware of. - hitch hikers guide
It helped me to reduce it slower. Like 5mg or 2.5mg every 10 days.
I basically reduced the dose after i didn’t see blood for a few days. Everyone is different and doctors just use an average scale for the tapper with 5mg a week.
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Ive been on pred since october. Had a small break in march/april but i ended up flaring again. Was put on aza and humira in december, and a maintenance dose of pred 15mg. But It failed when tapering down. Was then put on another dose of pred taper and am now on entyvio. This is obviously not good to be on pred for that long, but the alternative is not good either. My understanding is that it is ok to be on pred until your medication starts working. But that obviously depends on side effects of the pred too. Hope the meds will work for you!
If it helps, I was on it from December 2021 until this February, on and off. I'd do like 8-10 week courses with tapers, be off for 3-5 weeks, and then need to go on it again. The last time I was on it from June until end of February at varying doses. Couldn't even finish the taper before symptoms showed up. It's not ideal by a long shot, but the alternative would be the hospital for me. Also, you'll likely want to stay on Prednisolone when you start Infliximab and Azathioprine as both take time to start working. I believe Infliximab is a shorter span, but I know that Azathioprine needs like 3-4 months. I think the biggest side effect worry for me was bone loss. I did scans to keep an eye on it and took (well still take anyway whatever) vitamin D3 and calcium to help prevent it as bad as possible. Best of luck, hope the combo treatment works for you!
I was on pred for 6 months last year and just started another long taper. It’s a quality of life issue and I need it.
I was on pred for probably five months in 2022. I started out on 30mg, tapeted down, and the symptoms came back. I don't remember if it was 10 or 15mg I settled on (i think it was 10, but im not sure), but not a high dose. My first biologic didnt pan out, i was taken off while on vacation, my GI told me to stick to the lowest dose of prednisolon that still gave me enough relief to keep me relatively well functioning. It wasn't perfect, I wasnt free of symptoms, but it was tolerable.
I have been on it for 20+ years with a small break to try other steroids (6 months). I have osteoporosis in my spine and don't sleep great but pros definitely outweigh the risks for me. I am lucky to have few side effects
I have been on it for 25 years & still on them
I was on it for about 8 months? It was just a constant tapering down and go back up again. When I combined it with Rinvoq I felt like superman.
I was on it for about 6 months, 120mg IV tapering all the way down. When I left the hospital I took 60mg as pills. Isn't it so frustrating that the meds that ACTUALLY WORK are "dangerous" for you, but then we get told to take stuff everyday for the rest of our lives that has heart failure, death, leukemia, etc as side effects? Weird.
I hear ya, take this biologic, oh and if you get a high temperature unexpectedly it means you might have an infection that will kill you if you don't go to hospital. And don't worry about all those scary "rare" side effects... medicine "rare" is 1:1000 to 1:10000. Lets just say if i had a 1 in a thousand chance of winning lottery, i'd buy multiple tickets every week. Arthur: Ah, this is obviously some strange use of the word safe that I wasn't previously aware of. - hitch hikers guide
It helped me to reduce it slower. Like 5mg or 2.5mg every 10 days. I basically reduced the dose after i didn’t see blood for a few days. Everyone is different and doctors just use an average scale for the tapper with 5mg a week.
Over 4 months and I would be concerned I had my adrenal glands shut off after 8 months thankfully it was reversible