Are You Presently Off ALL Meds?

[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. 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
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