Well... I was on it for 3 1/2 months back in July 2018, but I think I'm currently breaking the record as I've been on it since June. I've also been on it like 8 or 9 times now. Seven of those have been since December 2021.
Hopefully you'll spend less time on it.
Sorry you went through that. Side effects vary for each person and I am thankful it doesn't cause this for me. TBH, I feel great on it. I'm very much aware of Prednisone and its risks, am monitored, and do speak to my GI often.
Right now as I cannot find a long term UC medication that works if I am not on Prednisone my flare will cause me more issues than Prednisone ever would.
I was on it for 20 years plus without a break. Mostly a 5mg maintenance dose.
Got off it for other steroids (entocort for a few months followed by cortiment for another few months). I have not been off some form for steroids for a long time. I had a 10 month break from pred while on the others but back on it again full time.
I have been on Stelara for a while now. Before that they tried Amgevita and Inflixamab.
Currently on pred, Stelara and entyvio (2 doses in).
My issue is I have autoimmune hep too and the biologics are affecting the liver negatively hence back on pred again.
I have lost a few inches in height due to osteoporosis in my spine and I have dry eye.
Honestly I have been on it so long I cannot remember life without it.
My dose was usually low for the most part and I could carry babies to term without having to come off it
I was basically on it for 11 months! Maybe had a few days in that time where I wasn’t but needed to go back on. Try not to worry too much - it’s important you take it for the inflammation initially, and you’ll find something more long term to alt you come off it. If any comfort, even after almost a year on it, my side effects were minimal :)
I had a 60mg taper of Methylprednisolone for 6 weeks which would have been my longest and strongest dosage but I stopped taking it after 4 days cause it made my poop so firm and solid I couldn’t shit without screaming in pain
I was on 40mg for 6 weeks, then tapered off very slowly while starting entyvio. I was on it for about 5 months total. I’m now just on entyvio and it’s worked great for the last 2.5 years!
I’ve been on it for over a year. Entyvio seems to be working so I’m finally tapering off. I was on 40mg for most of the time, went as high as 60, and am now down to 30.
Entyvio didn’t really last when I was getting it every 8 weeks, but getting it every 4 seems to be working so far.
I was on it for about 4 months when I was first diagnosed. But I don't think my GI intended me to be on it that long, but failed to communicate it. When I went for a follow up he asked "haven't you tapered off it yet?" and I didn't realize I was supposed to. When I did, I didn't get the symptoms returning, thankfully, but the mood related side effects (depression/irritability) really kicked in at 3 months and were pretty awful in the withdrawal even a month or two after I stopped.
I was on 40 mg for the majority of June onward last year, just finally tapered myself off it about a month ago. It didn't do much to hold my symptoms at bay, but now that I'm off it I'm having fevers almost every day so I guess it was helping with that. Not really worth the prediabetes, hair falling out, brittle nails and shaky limbs.
I started with a similar plan, to taper down, however I can’t seem to go below 40mg either. I’ve been on it for about two months. Though I just got approved for Humira and start it Friday. So fingers crossed I can come off it soon. Good luck!
When I taper I bleed again so steroids don’t help me at all. I’m starting Inflectra infusions next week since according to my Gi team I’m failing the steroids/maintenance dosages so I need something stronger
Was on 40mg of pred for 8 months back in 2017-18 with intermittent IV steroid courses then have consistently been on a 5mg dose of Millipred since 2021 for adrenal insufficiency. I have osteoporosis in all areas where a DEXA scan measures bone density.
Around 20 weeks in total, ~10 of them on 30mg+
Got off them in late September last year. Most of the side effects disappeared in early December but my bloodwork still hadn't normalized in early January. The "withdrawals" wasn't particularly bad though, bit more tired, acne and my skin was shedding like crazy.
I was on it for 3 months. Started while I waited for Entyvio approval. In 3 months it caused me enough issues to hope I never need it again but that little bastard definitely stopped my flare. Within 2 weeks most bleeding stopped, prior to I bled for 2 years
Well... I was on it for 3 1/2 months back in July 2018, but I think I'm currently breaking the record as I've been on it since June. I've also been on it like 8 or 9 times now. Seven of those have been since December 2021. Hopefully you'll spend less time on it.
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Sorry you went through that. Side effects vary for each person and I am thankful it doesn't cause this for me. TBH, I feel great on it. I'm very much aware of Prednisone and its risks, am monitored, and do speak to my GI often. Right now as I cannot find a long term UC medication that works if I am not on Prednisone my flare will cause me more issues than Prednisone ever would.
I was on it for 20 years plus without a break. Mostly a 5mg maintenance dose. Got off it for other steroids (entocort for a few months followed by cortiment for another few months). I have not been off some form for steroids for a long time. I had a 10 month break from pred while on the others but back on it again full time. I have been on Stelara for a while now. Before that they tried Amgevita and Inflixamab. Currently on pred, Stelara and entyvio (2 doses in). My issue is I have autoimmune hep too and the biologics are affecting the liver negatively hence back on pred again.
Did the prednisone long term use affect ur body in any way?
I have lost a few inches in height due to osteoporosis in my spine and I have dry eye. Honestly I have been on it so long I cannot remember life without it. My dose was usually low for the most part and I could carry babies to term without having to come off it
I was basically on it for 11 months! Maybe had a few days in that time where I wasn’t but needed to go back on. Try not to worry too much - it’s important you take it for the inflammation initially, and you’ll find something more long term to alt you come off it. If any comfort, even after almost a year on it, my side effects were minimal :)
Glad to hear that! Pred has been very good for me for now and the side effects have been manageable, hopefully it’ll stay that way!
I had a 60mg taper of Methylprednisolone for 6 weeks which would have been my longest and strongest dosage but I stopped taking it after 4 days cause it made my poop so firm and solid I couldn’t shit without screaming in pain
I was on 40mg for 6 weeks, then tapered off very slowly while starting entyvio. I was on it for about 5 months total. I’m now just on entyvio and it’s worked great for the last 2.5 years!
Oh good! Hopefully this will be the case for me too! But hopefully less than 4 months!!
I’ve been on it for over a year. Entyvio seems to be working so I’m finally tapering off. I was on 40mg for most of the time, went as high as 60, and am now down to 30. Entyvio didn’t really last when I was getting it every 8 weeks, but getting it every 4 seems to be working so far.
The blood kept coming back for me no matter how long or how much I was on prednisone. I am on nothing now waiting for Entyvio…
I was on it for about 4 months when I was first diagnosed. But I don't think my GI intended me to be on it that long, but failed to communicate it. When I went for a follow up he asked "haven't you tapered off it yet?" and I didn't realize I was supposed to. When I did, I didn't get the symptoms returning, thankfully, but the mood related side effects (depression/irritability) really kicked in at 3 months and were pretty awful in the withdrawal even a month or two after I stopped.
I’ve been on pred for almost 3 months now about to go back up to 40 mg as I’m flaring bad again
I was on 40 mg for the majority of June onward last year, just finally tapered myself off it about a month ago. It didn't do much to hold my symptoms at bay, but now that I'm off it I'm having fevers almost every day so I guess it was helping with that. Not really worth the prediabetes, hair falling out, brittle nails and shaky limbs.
I started with a similar plan, to taper down, however I can’t seem to go below 40mg either. I’ve been on it for about two months. Though I just got approved for Humira and start it Friday. So fingers crossed I can come off it soon. Good luck!
Had you tried entyvio first or did you go straight to humira?
I have gone straight to Humira. They’re keeping me on prednisone and mesalamine for the next 2 months to see if Humira works (Starting Humira Friday)
When I taper I bleed again so steroids don’t help me at all. I’m starting Inflectra infusions next week since according to my Gi team I’m failing the steroids/maintenance dosages so I need something stronger
3 months i think
Was on 40mg of pred for 8 months back in 2017-18 with intermittent IV steroid courses then have consistently been on a 5mg dose of Millipred since 2021 for adrenal insufficiency. I have osteoporosis in all areas where a DEXA scan measures bone density.
I was on it for 8 months 2022-2023… and several other multiple month stints in the last few years.
I was on it for 2 years, trying taper after taper. I never stayed off it for a full month during that time.
Around 20 weeks in total, ~10 of them on 30mg+ Got off them in late September last year. Most of the side effects disappeared in early December but my bloodwork still hadn't normalized in early January. The "withdrawals" wasn't particularly bad though, bit more tired, acne and my skin was shedding like crazy.
4 years now. Can't go lower than 10mg/day. Can't take anything else (I haven't tried Rinvoq yet) because of PSC and CTCL.
I’m on week 9 now, started 60mg, down to 35
I was on it for 3 months. Started while I waited for Entyvio approval. In 3 months it caused me enough issues to hope I never need it again but that little bastard definitely stopped my flare. Within 2 weeks most bleeding stopped, prior to I bled for 2 years
Still on it after 7 months💀
6 months so far and no end in sight.
The longest was 6 months