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) :crying:

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.

[pberggren1]

I will be off of pred next week. But, I will never be off meds like aza or rtx. I need to protect my lungs from a flare.

[vdub]

Interesting question and one I hadn't even considered. Even if I only consider my gpa meds, I seriously doubt I'll ever be off them. It's never been mentioned that I might be able to eliminate them. I'm on 12.5mg/wk of mtx and no one has suggested it might change, so I just assume it's a forever deal for me.

[chrisTIn@]

I was diagnosed three years ago and currently off all meds. I only take something (non-prescription) for my stomach, since that has never been the same since diagnose and treatment. I hope you'll soon have home internet again, Tobey! I mean David!

[Fran]

It is 15 years since I was diagnosed with Wegener's and after the initial iv cyclo / prednisolone, went onto 15mg methotrexate and pred. I was very lucky to wean off the pred after a year with no problems at all, but after 14 years I am still on the methotrexate !! Every time I have tried coming off or even lowering the dosage, I start to flare with joint pains and/or rashes on the body, legs and feet, but as soon as I get to the magic 15mg I am fine. My rheumy (still the original guy) says he is reluctant to try anything else as he feels I ' do well' on it and with bloods done every month, not to worry about the length of time on it (that's because I nag him now and then about trying other meds !!)
So. Vdub, looks as if we are both on the methotrexate for the duration !!
Best wishes to all. :thumbup: Fran.

[Alysia]

Hi,
I'm on rtx every 6 months & mtx 2.5x6 days a week, and I just started weanning pred.
I was taking changing doses (30-5), but lately I was taking 5 mg.
this week I started taking 4mg pred BUT it is scary :w00t:
I'm very vigilant about it and it seems to me that I cough more, my joints are more stiff and my ears aching a little bit. if I see that all this continue I will be back soon to 5mg.
I'm waiting for the day of being without pred. that will be celebration.

[Debbie C]

I was diagnosed three years ago and currently off all meds. I only take something (non-prescription) for my stomach, since that has never been the same since diagnose and treatment. I hope you'll soon have home internet again, Tobey! I mean David!

chrisTIn..It's nice to hear someone can gets off the meds...where was your wg. involvement at ??

[chrisTIn@]

Hi Debra. I had 'limited WG', that is to say...symptoms were limited to ear, nose and throat, no renal involvement. Before I was diagnosed, I had joint pains, extreme fatigue, and nose bleeds.

[norcalian]

I was diagnosed over two years ago. I got off of pred about six months ago. I've been on Aza (Imuran) for the duration..always somewhere between 125 and 150mg. My Rheumy said that she would only give me one chance for drug free remission. I was heading that way, but I have recently started flaring. So I'm back on 20mg of pred and will start rituxan treatments again soon. I assume that I will at least be on aza for the rest of my life. But then I had renal and pretty sever lung involvement which I believe gives me less room for error if I flare. aza isn't so bad.....its prednisone that sucks.

[renidrag]

I am one of the lucky ones that from dx to drug free took less than less than one year. Had the same cocktail as most and probably went too fast with the prednisone I am still drug free, now three years. Only lung involvement and still do bloods every three months.
Dale

[TOBEY32]

Found out this morning I may've been taking more Pred over the last month than needed (my error). Was supposed to have been 10mg, but was taking 20mg (wondered why my "man-boobs" were larger!). So there's no way I can go from 20mg down to 5mg - and you're right in that maybe even 10mg to 5mg would've been much.Two things:
How the heck do you successfully "cut" Pred down in smaller bits?
Is Mtx a replacement for Pred? Of course that doesn't mean everyone has the same "success", but if there's less effects/damage I'd like to try it if my doc is willing.

David

[Alysia]

Hi David.
I have pills of pred of 1mg.
when I was getting down from 20mg I did it carefully: 20, 15, 10, 9, 8, 7, 6, 5, and then wait for a while. the plan is 4, 3, 2, 1. each dose for not less then month ot two.
as far as I understand, mtx is for maintenance. pred is for flaring and inflamtions. but please anybody, correct me if Im wrong.

[annekat]

Found out this morning I may've been taking more Pred over the last month than needed (my error). Was supposed to have been 10mg, but was taking 20mg (wondered why my "man-boobs" were larger!). So there's no way I can go from 20mg down to 5mg - and you're right in that maybe even 10mg to 5mg would've been much.Two things:
How the heck do you successfully "cut" Pred down in smaller bits?
Is Mtx a replacement for Pred? Of course that doesn't mean everyone has the same "success", but if there's less effects/damage I'd like to try it if my doc is willing.

David There are pill cutters available at pharmacies but they don't always work that great. I hear pred is available in 1mg. pills, at least in some places. You might have to put in a special request for them. I'm hoping when I reach that point that I will be able to get those.

MTX isn't a substitute for pred. Pred supplies the steroids that your adrenal glands normally make but will have stopped making if you've been on 20mg. or more for a couple months or more (if I remember right what Sangye said). Stopping pred and just taking MTX would leave you with no cortisol (I think it is) from anywhere, unless your adrenals had already started to work again and could kick themselves into gear enough to get you through the day. MTX is an immunosuppressant and pred is an anti-inflammatory. Anyone can correct me if anything I said is a little off.

[Pete]

Hi David,

Here goes with my answers to your questions...

How to taper off pred? Very slowly. I tapered from 20 down to 10 at 5 mg per month. When I got to 10, I started to reduce 1 mg every two weeks. Fortunately, my adrenal glands restarted making the body's natural equivalent of pred, so I could get completely off. I've been off since 4/1/13 with no ill effects.

Mtx is not a replacement for pred. It is an immunosuppressant that attacks the white blood cells that attack the body. I believe it's a cytotoxin - a cell poison. Pred is an anti-inflammatory given in dosages that exceed the body's ability to produce the natural equivalent so that the body will heal from wegs damage.

Hope this helps.

[annekat]

Hi David.
I have pills of pred of 1mg.
when I was getting down from 20mg I did it carefully: 20, 15, 10, 9, 8, 7, 6, 5, and then wait for a while. the plan is 4, 3, 2, 1. each dose for not less then month ot two.
as far as I understand, mtx is for maintenance. pred is for flaring and inflamtions. but please anybody, correct me if Im wrong.

That sounds like a nice, slow taper of the pred, Alysia. Better to be safe than sorry.

MTX is a maintenance drug for a lot of people who were previously on something stronger. But for some people, MTX is the first drug used in treatment, along with pred. I can think of people on here who were started on MTX. As for flaring, I flared when my MTX dose was too low. So it was raised, and now I'm flare-free. But pred was raised at the same time, so I can't be sure which stopped the flare the most or if they both had an equal hand in it. All I know is the dose of MTX I'm now at works for me, even as the pred has been lowered since then.

[drz]

I used 2.5 mg tablets when tapering at higher doses. They are scored and easily split in half to help with reductions. I remember taking a 10 plus three 2.5 tablets when tapering from 20 to 17.5 mg. Then I started splitting the 2.5 tablets and going down a half tablet every few weeks.

[annekat]

I used 2.5 mg tablets when tapering at higher doses. They are scored and easily split in half to help with reductions. I remember taking a 10 plus three 2.5 tablets when tapering from 20 to 17.5 mg. Then I started splitting the 2.5 tablets and going down a half tablet every few weeks. That sounds manageable. It's also possible to taper by alternating days; One day at 10mg. and one day at 7.5mg, and continuing that alternation, would average out to 8.75mg/day.

[mishb]

I have had 1's, 5's, 10's and 25's. I'm not sure what other size they come in - I guess 2.5 could be feasible.

I did a taper like Alysia's but with 1/2's as well (pill splitters are a must)......and as I said, still at 3mg.

I think from 10mg downwards is way way harder than from 20 to 10

Good luck David. I hope you can do it easily

[MCC]

I have been off all medication for coming up to two years now and I feel fine -normal (was on medication for 18 months - 2 years). I have blood tests every 3 months plus a doctors visit. Eventually it will go to one blood test and visit a year, so I have been told.

I was VERY ill with the wegeners in the beginning, the doctors said it was very overactive in me and that I was going downhill much quicker than some people. So, if I can can come off medication I don't see why others can't.

[matlackb]

I got wegs at sixteen, then was off predisone, bactrium and on 250mg of cellcept only at 18. Then at 19 I relasped and was back to taking 40mg of predisone, 1000 mgs of cellcept, lisprinosil 20mg and taking bactrium. Then I was off meds at 20 and 21, only to relapse again at 22. But now I am 23 and almost off them again just taking 750mg cellcept, 5mg of predisone, 20mg of lisprinosil, and bactrium at half strength. Hopefully this time it wont' come back lol.

[Debbie C]

MCC, what were you on that they were able to get and keep it under control and where was your wegeners involvement at ??

Matlackb..I hope it works for you this time too, thats' alot of getting your hopes up and and get slammed again..Good luck

[Alysia]

I was taking changing doses (30-5), but lately I was taking 5 mg.
this week I started taking 4mg pred BUT it is scary :w00t:
I'm very vigilant about it and it seems to me that I cough more, my joints are more stiff and my ears aching a little bit. if I see that all this continue I will be back soon to 5mg.
I'm waiting for the day of being without pred. that will be celebration.

Hi,
6 days only on 4mg were enough to go back to 5mg. and 4 days on 5 mg helps me feel much better.
so here is my love letter to my pred:

My Dear pred,
for years we are good friends. I will never forget how you saved my life, only you. even the docs didn't know at that time how important you are going to be in my life. they just check if you can help me.
I needed you to be strong enough with me at the begining (60mg) and you cleared my lungs so well with no other help.
not only that, you drained my ears, you calmed my aching red joints, you stopped my diarhea and terrible pains in my stomach. (since i have also colon involovement).
I'm gratefull to you, my pred, for all that.
and there is more: you were not cruel to me like you are with others: you didnt disturb my sleep at nights. never. you didnt make me gain weight.
I admit I didnt like much the "cocker spaniel face" coming after "moon face". ("moon face" was nice, everyone said)
you even helped me cook better (more gourmet food) and feelling Hi, when i was depressed.
BUT, my dear pred, isn't it time to start separation ?
you know I hate sepatations but I can handle one from you.
so please, release me. set me free. I will never forget you.
I promise.
yours, sincerely :love:

[mishb]

Hi,
6 days only on 4mg were enough to go back to 5mg. and 4 days on 5 mg helps me feel much better.
so here is my love letter to my pred:



I think 5 works better for me too, Alysia. It is more comfortable.

I was on 4mg for at least 3 months and then went to 3mg. My rhuemy has already said that I will probably never get below 3mg and will alternate between 3, 4 and 5 - depending on how I feel, or how the bloods look.

I love your letter. I don't like separations either, but agree that this is one that I could enjoy......one day