lowest Pred before stopping

[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!