3 years of Prednisone Ending-Wish me luck

Awesome news! Since you have been on Predisone for such a long period of time, I would suggedst coming off VERY VERY slowly. I think you have the right idea for doing 2.5 for a few weeks then 1mg for another few.

Please, keep us update on Entyvio! I'm on Humira, however would love to switch to Entyvio at some point. Just based on the lesser side effects and how it's guts specific.

Congrats, I'm glad Entyvio is providing some relief! I'm hoping the longer you're on it the better you symptoms become and you can get into remission. I'm sure you're happy to be off prednisone!

I'm sorry I don't have any advice since my pred tapers are normally down by 10-5 mg, however I've been on prednisone longer this time, and I'm not sure if I'll end up having to taper more slowly like you. Did you doctor give you any advice? I hope all works well for you. Have you been on prednisone for 3 years straight?

Great news! I don't have any experience coming off pred for longer than 1 week but I sure think slow is the way to go

Imagine the slowest taper you could possibly do, and then do it at half speed. I was on pred for far less time than you, and I thought I tapered slowly, but I wish I had gone more slowly.

Rather than going from 2.5 to 1 mg, I would do 2.5, 2, alternating 2 and 1, then 1, then alternating 1 and 0.

Pluot said...
Imagine the slowest taper you could possibly do, and then do it at half speed. I was on pred for far less time than you, and I thought I tapered slowly, but I wish I had gone more slowly.

Rather than going from 2.5 to 1 mg, I would do 2.5, 2, alternating 2 and 1, then 1, then alternating 1 and 0.

This.

After surgery I tapered off the last 10mg at the rate of 1/mg per week for 10 weeks. Far, far slower than my past tapers, yet even that left me in ruins. I was so tired I could barely walk down a high street without wanting to sit down. Got over it eventually, but it took months.

I had severe muscle and joint pains for about a week after I stopped taking prednisone (I went 5, 2.5, 0). The pain in my knee was so intense with movement that I mostly couldn't walk, or had to limp so I could get around without bending my knee.

Ultimately those symptoms went away on their own after a week, which I'm grateful for because the issues were truly disabling, but I had only been on prednisone for four months. I imagine it could have been more intense or longer lasting if I had been on prednisone for longer.

Wow... your news is encouraging! I'm happy for you.

Great news!

As for the pred taper, at 5mg, my dr says reducing 1 mg at a time for a week (or 5 days if doing very well). I realize you probably want to wrap it sooner, but that's the recommendation after having been on it for so long.... Hoping it goes smoothly for you!

I've been on Entyvio for 7 weeks, and FINALLY have been able to reduce the prednisone below 10mg. Don't know if it's the Entyvio or my latest tapering plan. My primary care doctor came up with the latest plan, which is taking it down by 1.25mg a month. Yes, a month. So I've been at 8.75mg (I'm splitting 2.5mg prednisone tabs) since mid-August and will be reducing to 7.5mg next week. That means it'll take me six months to get off it entirely. Yay. But if it works, it works.

Anyway, indy, if you go by my plan, stay on 2.5mg for a month, then 1.25mg (or 1mg if you don't want to split the 2.5 tabs and get 1's instead) for a month, then done. I had been a big proponent of the alternate day tapering strategy since that helped me back in the late 1990's, but that appeared to be making things worse this time around.

Also, indy, have you had a recent bone density scan? It's a good idea to get one done if you've been on prednisone for a long time. My recent one showed I have developed osteoporosis.

I agree with the others, slow and steady wins the race :)

As for bone density scan, I would imagine anyone can give you a referral for one. My OB did once but it was years ago. It's likely you're more likely to get a GP or someone along those lines to look into these types of things.

100% agree with Pluot.

It's worth going slowly so your body can adapt. Otherwise, the UC symptoms could come back and you may have to jump up to 10 or 15 mg and start over. Do not take the risk! It's so hard to wait when you're so close but remind yourself that it's a marathon, not a sprint.

If you experience any UC symptoms after dropping 1 mg, go back up 1 mg for a few days and try again. Or start alternating. But don't progress from one amount to another if you have any UC symptoms.

You can get 1 mg tablets of Pred.

One thing that helped me was splitting the dose into two and taking the first half in the morning and the second half around 3:00 pm. That May or may not be necessary for you but my body preferred that regime.

Good luck.

yeah, i don't consider the red kool-aid colored liquid bms to be the most charming part of the disease.

I think I'm going with the super slow taper. going to request 1mg prednisone and also talk about a bone scan at my next appt. I'm kind of in-between primary docs so I'm hoping the GI can order and get the results.