lowest Pred before stopping

[stephwest]

Hi I am down to 7.5 mg Pred going to 5mg for a month, is that the lowest or can you go to 2.5mg then stop?
(does anybody stop, have any of you stopped Pred? for ever!!!)

[renidrag]

Stopped at 5 then zero and yes was off for over 4 years. Most think you should go to 2.5 and then perhaps one. Don't rush it. Went back on then off again.
Dale

[Pete]

I'm holding at 3. After I see my doc in a couple of weeks, I'll either get off mtx or resume the pred taper at -1 mg/month. That would have me off pred in mid-July. I got off about three years ago and was off for 4 months before I had s small flare.

Good luck!!

[Mas78]

Over 2+ years on prednisone I went from 80mg down to either 5 or 7.5, my labs were a little wacky, i believe my red blood cell count tanked, and my rhumy took me off pred and cytoxan. It made me feel horrible for a few weeks as i remember. But i haven't had to take anymore of either of them in the last 13 or so years.

[me2]

Hey, that's sounding good. I have had extremely good luck - and , extremely bad luck. I was off of prednisone for 20 years. Obviously, that is the good luck. The bad luck is I have now been on prednisone for 15 years and counting. I may never be able to get off of it. It sounds like you have at good shot at it- for ever!!!

[annekat]

I've had WG for 4 years and while doing pretty well, haven't gotten lower than 7.5 mg. without having a flare. Everyone is different. I'm now sort of regulating my own pred, with the doc's permission, and since I was recently feeling flarish on 11mg., have been alternating between 15 and 20 mg., with the intention of continuing on some sort of alternating regimen as I taper lower. I have read on here of people having success with alternating dose tapers, like 15mg and 10mg the next, then maybe going to 12mg. alternating with 10mg, or whatnot, and eventually getting off the stuff. Before, I've always just taken the same amount every day, although my doc has suggested alternations at times. We will see how it goes. I wouldn't mind being on a small amount indefinitely, like 2.5mg or 5mg., to help avoid flares, if that's how it works out.

[Mas78]

Annekat, the alternating doses to taper is what i did after getting down to 20 or 30mg, been so long i don't remember excatly. I don't feel that it shocks your body as much after getting used to the higher dose.
And there are some meds that are routinely given with alternating doses. My Coumadin, I take 10mg and 5mg certain days to keep regulated.

[drz]

I've had WG for 4 years and while doing pretty well, haven't gotten lower than 7.5 mg. without having a flare. Everyone is different. I'm now sort of regulating my own pred, with the doc's permission, and since I was recently feeling flarish on 11mg., have been alternating between 15 and 20 mg., with the intention of continuing on some sort of alternating regimen as I taper lower. I have read on here of people having success with alternating dose tapers, like 15mg and 10mg the next, then maybe going to 12mg. alternating with 10mg, or whatnot, and eventually getting off the stuff. Before, I've always just taken the same amount every day, although my doc has suggested alternations at times. We will see how it goes. I wouldn't mind being on a small amount indefinitely, like 2.5mg or 5mg., to help avoid flares, if that's how it works out.

I have been at 5 mg pred for past couple years and will likely stay on that dosage indefinitely along with my maintenance dosage of AZA at 175 since the doctors think it will help reduce flares or at least make them milder. The side effects at the lower dosages are minimal too it seems.

[mishb]

I have been diagnosed for 5 years and have been on pred for 4 years this week (was on Mobic before then).

I have been on 3mg and holding, since January 2013 and doc thinks that this is where I will stay.

Sometimes I think that I feel fine today so I wont take it, but then my brain kicks in and tells me to stop being stupid :razz:

Good luck with the reduction Stephen

[stephwest]

It is decided 1 month at 5mg --1 month at 2.5mg--1 month at 2.5 every 2 days then STOPI will keep reporting on taper

[smith]

With all due respect - I would actually let the doctor direct the dosage and time not myself. When I used to take pred it was tapered very slowly to 1mg then to 0.

[stephwest]

Sorry this plan was decided by the Consultant Rheumatologist and myself yesterday morning, after 6 months of blood tests at less than <3 CRP and I suppose 2.5mg every 2 days is the same as 1 and a bit (1.25) mg a day before stopping but many thanks for the comment, please reply as I need lots of advice!!!!

[kaysee]

I did a similar taper to yours stephwest. Once i got to 5 mg per day my dr told me to do 5 mg every other day for two weeks then 5 mg every third day for two weeks then stop. I have now been off pred since mid February and I seem to be doing fine. I have had no increased symptoms of WG since stopping.

[stephwest]

Thank you Karen that is very encouraging keep it up all best Stephen

[annekat]

Karen, that is an encouraging testimonial to using an alternating dose method to get completely off pred.

[marta]

Hi I am down to 7.5 mg Pred going to 5mg for a month, is that the lowest or can you go to 2.5mg then stop?
(does anybody stop, have any of you stopped Pred? for ever!!!)

It took me four and a half years to get off the nasty stuff, but I am now officially off as of end of January. I was very conservative with my wean after reading too many stories on here about flares being induced by trying to get off to quickly. My doc was on the same page as me, so that makes things easy - she lets me go based on how I feel, and if some months it was too much, I'd just take my time. The drops for me were .5mg every drop below 7.5mg. It sucked between 8.5 and about 5.5 (where your adrenals feel pressured enough to start producing again) but I am off now and no symptoms since getting off. It sure was a long process, and I can say without any hesitation that I'd much rather be on chemo than on steroids. I am now on Imuran alone and we'll just hang there for a while, but no more pred, and it feels so awesome to be back in my old face (granted it's much more wrinkled - like a balloon that was really really blown up, and has now deflated - can you picture it? ;) )

I promised God, or whoever's in charge that I would love my wrinkles after the pred moon face, so I love each one like a general's stripe... they are my medals of war.

Best of luck, and trust your gut. You can always go up to your last dose if you are finding the drop too hard, get to a point where you don't feel crappy and then try again with a smaller drop. That worked for me on a few occasions. I also used alternating doses (to avoid cutting the pred)

[marta]

With all due respect - I would actually let the doctor direct the dosage and time not myself. When I used to take pred it was tapered very slowly to 1mg then to 0.

That only works if you have a good doc.

My dad's doctor almost killed him with a pred wean regime that was too aggressive, and dad followed his advice and went into adrenal crisis where he almost died. Different people, different diseases, different constitutions doesn't work with a doc who only goes by the book and doesn't treat the patient like a human being. I am lucky that I have a doctor who trusts me and my experience and has coached me to do the right thing at my pace. My dad wasn't so lucky. I don't believe in blind faith in doctors, and I know this get's some hackles up, but I've buried two friends in the last four months because of doctor's appalling mistakes, and guess what... these docs are not held accountable, and are continuing to treat patients. Life and death shouldn't be luck of the draw of which doc you get...

Sorry, it's a touchy subject in my world right now, so I'm hyper-sensitive, but trust yourself. There are great docs out there, but there are also a bunch of hacks as well. If it wasn't for the crew on this site, I would probably not be talking to you right now because they all talked me into finding a good doc after my first rheumatologist was way over his head with my case, but his ego kept him from telling me so... he almost killed me too.

[pwc51]

My consultant insists on me getting to zero pred in a short period of time, despite my protestations! He is convinced that RTX is what is really working and that I don't need pred. I am currently in the final stages of getting to zero - 5mg to zero in 2 weeks! I will let you know how it goes and then what happens over the next few weeks.

[im so blessed]

Remember that everyones body deals with it in a different way. And each time might be different too. Ive done prolly 10 weans and all but this last ive gone from 10 to 5 to 0. After starting at 40 or 60. Never had any issues. This one is different....u really need to listen to your body MOST!!!

[MaxD]

Sorry this plan was decided by the Consultant Rheumatologist and myself yesterday morning, after 6 months of blood tests at less than <3 CRP and I suppose 2.5mg every 2 days is the same as 1 and a bit (1.25) mg a day before stopping but many thanks for the comment, please reply as I need lots of advice!!!!

Sounds very reasonable. After 7 mg, I tapered down by 1mg every two weeks until getting off prednisone. 3 months later, I'm mostly recovered from withdrawal. Now I need to get into a strict exercise regimen - if only getting started were easy!

[Pete]

Sounds very reasonable. After 7 mg, I tapered down by 1mg every two weeks until getting off prednisone. 3 months later, I'm mostly recovered from withdrawal. Now I need to get into a strict exercise regimen - if only getting started were easy!

Just.start!! One.step.at.a.time. If you want to find support, get fitness tips, or just commiserate, go to the thread "Any virtual workout buddies out there?" Start slow and increase your effort gradually. I have a working hypothesis that weggies who exercise regularly do better at managing the disease than those who can't or won't exercise.

[pwc51]

I have just done 4 days alternating 5mg and zero - have been feeling pretty uncomfortable today after zero yesterday so think I may stop the reduction for a bit and take it a bit slower. Has anybody else experienced this when trying to drop quickly? (I know most drop much more slowly - this is certainly the fastest I have been asked to drop!)

[Dirty Don]

Yes, didn't work well at all for me. Got to 5, started feeling poorly, went to 3, started symptomatic crap again...went back to 5 for about 3 mos, then dropped 1 per month, worked that time. Am off it now. I don't understand why docs keep that kind of drop up when the patient doesn't react well...hear it often on here. Best to you, you'll get there.

[NicShaf]

Mine was 2.5, then I stopped. I haven't been on Pred since March 2012, started in Dec 2010. I hope to be off Pred forever:)