Are You Presently Off ALL Meds?

[TOBEY32]

I'm not, but doc reduced my Pred yesterday to 5mg (was 10mg) with my usual 50mg Imuran.
Guess there's not way to know how things will go till you try something new. I believe he said he wants to work towards "0" anything in the future.
Just curious: If this is you how is it going? How often do you get lab work?
No longer have home Internet, but will check-back monday.

David

[drz]

Due to high risk of flares once you go off all meds, my doctors recommend I stay on them for another 10 or 20 years unless a cure is found in mean time. Mine are 175 mg of generic Imuran and 5 mg pred. I get labs monthly or more often when symptoms suggest a need for doing so.

[Dirty Don]

3 days to my 2nd anniversary of crash and dx...how can one ever miss the good old days?!?! But, I digress: I will be off pred at end of next month. Docs are talking one more year on mtx, then, if numbers stay consistently good, they will consider taking mtx off the list too. New rheumy suggested I probably don't even need it that much now...but we agreed if it's not hurting me, then keep it up for at least another year. Mtx doesn't do the damage pred does. I get labs every 3 months...probably will be that way for many years to come.

[RudiK]

I'm still on 5mg preds and 75mg Immuran. Doc thinks he will have me off all meds within the year. So, there is hoping.

[annekat]

David, I am at 10mg. pred and based on what I've read on this forum, if my doc asked me to lower it to 5mg. all at once, I would argue with him. That is cutting your pred in half, right at the time when you don't know yet if your adrenal glands are coming back on board yet. Well, I guess everyone is different, and you will find out if it is too big a drop. But most people on here I think reduce around one mg. at a time from 10mg. on down, or some might do 2.5 at time, I don't know. But I'd rather be on the conservative side and go slow.

[Pete]

Hi David,

I'm off pred and currently taking 15 mg/week of mtx, a bactrim 3x/week, and 1mg/day of folic acid. Will have the discussion about coming off all of these at mid-year next year, assuming the wegs dog doesn't awaken.

[DJS]

My wife is off pred since March 2013, and off 75mg azathoprine since last week when her white count dropped too far.
the only two meds are mepron to prevent a lung parasite, and some calcium to build up her bones that pred damaged.

[carriej22]

I'm only a little over one year in; and still on quite the cocktail of meds. Some meds are to control symptoms from other meds... What a mess!

I don't have good numbers though... Seems like some people get those good numbers, and some don't.

[annekat]

I think I have pretty good numbers and I get blood work about every 2-3 months. I'm still on meds, fairly low levels, but expect to be for awhile because when I was on a lower dose of MTX I flared and had to increase both it and the pred. That did the trick, but I'm not ready to repeat that experiment for awhile.

[mishb]

Hi David,

This month will be 3 years of diagnosis for you and me (the same day)

When I dropped from 10mg pred I did it very slowly 9, 8, 7.5, 7, 6, a month or more at each - basically when I didn't have any aches or pains on the lower level, did I try for the next step down - took about 9 months. Once I got to 5mg I stayed there for a year and then slowly down to 4 for a couple of months and now 3 since April this year.
I can't seem to get rid of the aches and sometimes pains at 3mg and my rheumy has now suggested that 3 would be the lowest I can ever get and will probably alternate around the 3,4's or 5's for the rest of my life.
I am still on 20mg MTX which he also suggested that I will remain on, and 200mg of plaquenil (down from 400mg)

I have my bloods done every month.

My suggestion would be - not to go from 10 to 5 in one big drop.

Keep us posted on how you are going with it.