Stopping My Meds - Your Experience?

[TOBEY32]

I'm on my lowest doses of Pred & Imuran, but thinking how I'd like to go off all altogether. Have a call in to my doc regarding this. Know it's up to me in the long run. No guarantees against flares - and no way to know otherwise.
Hope everyone is good. Haven't meant to ignore the site. Time passes and life continues. Not affording the Internet right now at home keeps things limited too.

David

[Dirty Don]

It's all about timing at your point...if the numbers say so, then wean off them as best you can. If numbers aren't saying you're OK, then don't do it...as much as we all want to get off our drugs, we can't afford to give them up if the body still is using them to keep us safe. Best to you!

[woz]

If you do go off your meds, I would recommend regular blood work, I tried to drop my meds, started to go down in dose of aza, felt great, but 4 months down the track my bloodwork showed my PR3 was slowly increasing, went back to a higher dose of aza still cant get it to go down, but it is stable, so be careful.

Regards Woz.

[renidrag]

I did go off all meds and remained drug free for a little over four years when, as with WOZ my blood work showed rising PR3 and CPR were creeping back up. On low dose pred now. When I went off meds it was scary, but Doc asked me how I felt, fine, then said lets try it and see. Do keep up with bloods though.
Dale

[TOBEY32]

Do I base my decision on my Anca? Would that be the decision-making test?
My doc appts have gone to ever 6 months, and my next is not till February. Haven't heard back from the doc yet.

[Pete]

Do I base my decision on my Anca? Would that be the decision-making test?
My doc appts have gone to ever 6 months, and my next is not till February. Haven't heard back from the doc yet.

I don't think you should. Look at this (lasts a little over a half hour, but very informative - and by one of the "big hitters" in vasculitis care): https://www.youtube.com/watch?v=o4uOqpGoaFY&list=PLr6Bwau6uSmv1cBFURFUUW5XLXdoFSX-q&index=2

[MikeG-2012]

Do I base my decision on my Anca? Would that be the decision-making test?
My doc appts have gone to ever 6 months, and my next is not till February. Haven't heard back from the doc yet.

Not if you want to be healthy. My ANCA has been negative since right after diagnosis--even through flare-ups its been negative.

[mishb]

David, you and I were diagnosed on that very same day in August, 2010 :crying:

Although we are thousands and thousands of miles apart, we shared a bond. We shared symptoms and at one stage were basically on the same meds.
You have always come up with the great questions................and you have ALWAYS wanted off the drugs.

It scares me. I'm not sure that I ever want off them. I'm scared of ending up back were I was at the beginning.
That is me though, and this is you :thumbsup:

I believe that you can do it - you can get of the meds.
Take it slowly and watch and listen for anything that is going on within you.
You know your body, you know what WG feels like.
Everyone above has given great advice.
The only thing that I want to say is - please wait until you hear from your specialist.
Please don't try and do it without them saying okay

You know what, if they don't give you the go ahead just yet, then that is okay too.
These things have kept you alive and kept WG at bay for 4 years now - so if the doctors say 'no' then try and ask again another time.

Good luck and best of health to you in this new journey to med free remission :hug1:

[Pierre42]

The Golden Rule when tapering is to test everything and test often, because normally your blood numbers will show problems before you physically notice anything.

WG/GPA is a little weird in that not all of the blood indicators trigger for all people , or even for any person at all flares, you really need your specialist eyeballing them all and recommending dosage.
Feel free to pick his brains, make him explain what the numbers tell him, and why that means what dose he advises. It's your health, and if you're feeling up for it you're welcome to push for surfing the bleeding edge (often literally, in this case).

Broadly speaking you would taper the pred first,because being 100% pred free and still on _anything else_ is better than any pred at all.

The entire point of Azathioprine/Imuran , Methotrexate (and others) is to allow you to decrease and (ideally) drop entirely your Prednisolone dose. (that's why they call them "steroid sparing" drugs)

I'm at the end of a pred taper after flaring midyear, and next year will be "flare-surfing" next year to optimise (ie reduce as much as possible) my Imuran dose.

[TOBEY32]

I will read closer what you guys are saying.
My sis mentioned what about meds every other day. Maybe that is an option in order to reduce further.
Maybe I'll wait till my Feb appt and speak w/ the doc in person about possible options.

David

[woz]

Your blood-work is about the only way to know how you are going, when you start tapering your meds, to the best of my knowledge PR3 and CRP are a must to keep a check on, check with your doctor, but if it was me I would get my blood work done monthly, for a while, then every second month, and so on. all the best, I hope it all goes well.

All the best for the future....Woz.