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stephwest
01-31-2014, 01:10 AM
Pred now down to 5mg a day.
After 5th month of good blood test numbers, we have reduced Pred to 5mg per day, is anybody on 2.5 mg a day? ( started last July on 80 mg) I see this as a sign to reduce to zero sometime.
The MTX is still at 20mg one day a week ( the docs say Methotrexate is for ever--Ahhh, has any body got off it for good--please replay ) I take on Tuesday and feel odd on Wednesday, is that normal?
All best
Stephen West

Pete
01-31-2014, 01:39 AM
Hi Stephen,

I'm down to 10 mg/day of pred and hoping to find the dosage (preferably less than 5 mg) that will keep me asymptomatic.

I also take 20 mg/week of mtx. I take half in the morning and half in the evening each Wednesday. I feel a little tired on Thursday, but that's my only side effect, so far...

renidrag
01-31-2014, 02:05 AM
I started at 80 and decreased to 0 in 6 months. Don't recall headaches. Still 0 so yes you can get off but I am probably more the exception. Never had mtx mine was cyclo. Off that too.
Dale

Dirty Don
01-31-2014, 03:29 AM
I've been as low as 0 for a month...then I flared and went back up on pred, just slightly at this time tho. Have been told same thing about mtx...and if it doesn't work, then rtx is next, no options. If one takes the entire dose of mtx at once, then some peeps get ill, nauseous, odd, etc. I did until doc had me split dose in half, each 12 hours apart. Worked, no more ill feelings with it.

annekat
01-31-2014, 05:25 AM
Congrats, Stephen, on getting down to 5mg. I just went to 7mg. and hope I can maintain that and keep going to 5mg. I'm at 15mg. per week MTX and even with splitting the dose, find it makes me feel a little "off" for a day or two. I hope MTX isn't forever, and am thinking there must be someone on here who got off of it. But if it is forever, so be it, I guess. My doc has talked of at least reducing the amount at some point, which I think would help with the side effects.

Dirty Don
01-31-2014, 01:44 PM
Rheumy said to start trending down on the pred again today...ALL numbers came back absolutely normal...yea!

mishb
01-31-2014, 10:13 PM
Good job Stephen :thumbsup:

I am at 3mg pred but can't go any lower without the pains becoming a little unbearable. At 3mg the joint and muscle pains are there but I can manage without needing any extra pain killers.

I am on 20mg MTX on Mondays and yes Tuesdays I tend to wake with a headache but is all good by Wednesday.
I am also on 200mg Plaquenil daily, with no side effects.

Rheumy has told me that I will never get off MTX and will probably never get any lower on pred......in fact, he thinks the pred will go up and down between 5mg and 3mg.....no lower. He has never mentioned the plaquenil but I have reduced from 400mg to 200mg.

Good luck with the next reduction.

JeanMarie
02-03-2014, 01:15 PM
I had a flare while on MTX--there was kidney involvement so I haven't had MTX since. I'm down to 6 mg pred -- doing a very slow taper but I've started to accept the fact that some pred is here to stay.

Congrats on getting down to 5 :thumbsup:

Debbie C
02-03-2014, 02:47 PM
I've been at 5 mg. for over a year now I think,my doc said I can try to get off of it but since I am not taking anything else I am afraid if I do I might have a flare and have to go to something stronger. I might try lowering when the flu season is over and not stuck in the house. I am hoping for a day when we can all get off this crap. I was watching 60 Minutes tonight for a bit and there was a 15 year old kid that came up with a way to detect prostate cancer sooner but of course it has too go thru trial periods for years before it is availible to drs. ( sounds stupid ) if it works use it. As far as we know they may have a cure for this but would cost the pharmacutecal cos. too lose much money. Ok...enough of that I'm going back to watch the Broncos get their butt kicked !!!!!!
Oh and I'm glad Don and Stephen you are able to cut back now:thumbsup: YEA !!!!!

Pierre42
02-04-2014, 10:24 PM
Pred now down to 5mg a day.
After 5th month of good blood test numbers, we have reduced Pred to 5mg per day, is anybody on 2.5 mg a day? ( started last July on 80 mg) I see this as a sign to reduce to zero sometime.

Having been officially in remission since mid last year I'm now "tapering" my pred. Doc says my blood looks as red as anyone else. :tongue1:

For the last year-anna-half I was at 5mg, and now I'm doing 2.5mg for 2 months (and then ZERO!):w00t:

I'm maintaining the MTX at 10mg weekly, and the doc likes that as the long term plan. :unsure:
So far I've been extremely lucky, having absolutely no side effects from the MTX and only minor effects fom the PRED back when I was on a relatively high dose :predrage: (though not as high as yours).

I gather that the CYC and plasmaphoreisis of my initial treatment was enough to convince my immune system that we all meant business :ohmy:, and so it has been pretty much well behaved since then.:bored:

mishb
02-04-2014, 11:10 PM
Yay Pierre, that's a great effort :hug3::lol::hug3::lol:

What hospital do you go to in Melbourne - you have probably said it before. They have done a wonderful job and so have you.

A maintenance dose of MTX is a good thing, I think. I hope the next two month, to zero, run smoothly.

annekat
02-05-2014, 02:57 AM
That sounds great, Pierre. I'm at 7mg. pred and hoping to easily get to 5mg. in the next couple months. I was at 10mg. MTX/wk for awhile, as my initial dose after transitioning from MTX, which proved to be too little, as I flared. Now I've been on 15mg. MTX for about a year, and it is going quite well, allowing me to taper the pred. Knowing that you are at 10mg. MTX is encouraging, so that I can look toward tapering that, too, at some point.

Wegetarian
02-10-2014, 02:55 AM
I'm still on 10mg of pred (80 mg at high-point last Aug). Dunno why they taper me so slow, 7,5mg in March and I think 5mg in May. My blood is fine, although my nose has been a bit clogged so my doc told me to use this cortisone spray (figured since I've still lowered the dosage its better to have some directly to the nasal area which was affected with Wegs).

Doing 25mg of MTX per week, initially I got nauseous from it and could feel slightly nauseous for a few days but for the last months I haven't noticed anything after taking it (Yay!).

annekat
02-10-2014, 03:13 AM
Dan, I don't know that it is all that slow. When we have been on pred a long time, including the initial high dose and everything since then, it can be very difficult to get off it at the lower doses because the adrenal glands may not yet have kicked back in after being shut down by the pred. Some can do it more easily than others. In your case, you have only been on pred since August, which although not a short time, is shorter than for many of us. So it is possible you could have an easier time tapering, though I've heard that after two months of higher dose pred, the shutdown of the adrenals is complete. I'm no expert by any means, just repeating what I've read on here from more knowledgeable people, and it seems to fit when applied to my own experience.