Methotrexate, Pred Stepdown & advice

[wgrebel]

Hello fellow Weggies. I've been a Weggie one year today. I was taken off CellCept a month ago today and put on Methotrexate. I could not tollerate the CellCept because of the GI problems it caused. I have tollerated the Methotrexate very well. My numbers are showing incative Wegener's & my doctors are beginning a stepdown from 20 mg of prednisone next month on November 10. I have researched and read that from 20 to Zero is the worst as far as stepping down from preds. If anyone has a schedule available for a stepdown after 20, let me know. I have been working at home FULL TIME since Middle August and it is great. It is wonderful to be busy with work and family and not just being sick.

WG REBEL

[Jack]

You should be OK coming down from 20 to 10 but then it can become tricky. The last 5mg are by far the hardest because your own adrenal glands have to wake up and start doing some work again. Very often they are reluctant!

[elephant]

When I was on 20 mg prednisone I tapered 2 1/2 mg every 4 weeks( 17 1/2, 15, 12 1/2, 10mg).Once Starting with 10 mg, I tapered down to 1 mg a month, but that didn't work for me, so I ended tapering 1/2 mg a month....I am down to 6 1/2 mg of prednisone now.

[DEE]

im on same plan as Elephant was on 20mg now down to 15mg this month going down 2 1/2 mg seems to be ok at the moment

[gutless]

How do you know if the amount you've reduced to is not okay? I'm currently down to 10mg from 20 (decreased 1/2 pill every 2 weeks) and will see the doctor soon to get further instructions.

[marta]

Hi WG Rebel, I too have just been taken off cytox (cyclophosphamide) last week and am currently immunosurpressant free for 7-10 days before I start methotrexate on Halloween - spooooky.
Ironically I'm actually a little anxious about not being on chemo, even though I've been looking forward to the day, but now it feels like my security blanket has been taken away. Back to pred though. I was going down 2.5 every 2 to 4 weeks (that was what the doc had instructed) From 20 to 17.5 I took three weeks, and then two weeks to 15 then two weeks to 12.5. I'm at 12.5mg now and have been instructed to stop the wean for about a month and a half to ensure the methotrexate is working it's magic. I've been feeling a little crappy the last couple of weeks - very up and down in that some days are a lot better than others - but when it's down it involves some crazy sharp headaches and ear aches. There are too many variables though to pinpoint any correlation - I got a flu shot, I went down 2.5mg of pred, I also had a bit of a cold and there are lots of sickies around me, plus now I'm cytox free (but that came after the symptoms) so weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee.... the rollercoaster ride continues.

[jola57]

I am on a similar plan as above. I am down to 4mg and holding for almost two months. Since I am going on a trip, I will not start to go down until I am back and rested. I will then taper only 1/2mg per month. I knew that I tapered too quickly because of the pain, it was just like in the beginning. I quickly go up 1mg for a couple of days and if I feel better go down 1mg again. good luck in tapering, go nice and slow. better to be slow now than having to go back to high dose quickly later.

[drz]

When I was on 20 mg prednisone I tapered 2 1/2 mg every 4 weeks( 17 1/2, 15, 12 1/2, 10mg).Once Starting with 10 mg, I tapered down to 1 mg a month, but that didn't work for me, so I ended tapering 1/2 mg a month....I am down to 6 1/2 mg of prednisone now.

This seems like a very conservative step down. What happened that it didn't work out.

[elephant]

Once I got down to 5 mg my ears and sinuses ( mini flare) were causing havoc...feeling full ears and stuffiness. So I had to go back up to 10 mg and stayed on that for months and then finally weaned 1/2 mg every 4 weeks. I'm down to 6 1/2mg and my left sinus is starting to cause me trouble.

[Sangye]

Elephant, are you still doing the Bactrim DS every day? I remember that I keep asking you this, but I don't remember what you keep answering.