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Thread: Finally getting off Preds

  1. #11
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    Congrats Dumpy - I'm struggling with my increased pred at the moment. I've been on 5mg for quite a few months now and it's a bit of a shock having to take 20mg again due to a recent flare. I'm really not sleeping well, can't seem to get into a deep sleep and I wake up very suddenly in the middle of the night being fully alert immediately.
    I also hate the sweats that have come back, the wanting to eat everything in sight despite not being hungry and that feeling of being close to a panic attack. I'm also feeling the paranoia and freak at the slightest sound or movement that I spot out of the corner of my eye.
    I'll throw a party the day I finally get off the evil elixir that is pred!

  2. #12
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    Moyan, I am so sorry to hear that. I remember you mentioning the dizziness and passing out. I think that it is related to the WG flare. So what kind of medicines are they putting you on for this flare? How is your blood pressure?

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    Luce, did they start you on 20mg for the flare or were you on a higher dose of Prednisone? I didn't start to sleep until my prednisone was reduced to 10 mg. Are you able to sneak a nap in? How are you feeling over all?

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    Luce, you and I are in complete agreement about pred--it's completely evil. Yesterday I started tapering from the 4 mg/day I've been on since July. My doc said to cut down by 1 mg/month. Feeling uncertain about some symptoms I'm having, I decided to just go to 3.5 mg first and see what that does.

    When you and I are completely off, I will join you in a BIG party.

  5. #15
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    I went to my Rheumy today and she wants to decrease my prednisone too by 1 mg/month. I am a little anxious. She said I can stay in remission without the prednisone. Today we went over my sinus stuff. I am starting the veramyst and see how that goes. At this time I have to keep a close eye on what is a flare or cold/sinus. My thought is this ,"I'm on 6 mg prednisone, so wouldn't it show it's (WG) big ugly face if I'm on that dose? " My Rheumy wants me back on Boniva. I stopped it four months ago. Just don't need another side effect. Don't know if I should go on it. Any thoughts?

  6. #16
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    I would not take Boniva unless a bone density scan suggested that I needed it. There is the potential for some nasty side effects and most of the increased risk factors seem to apply to people being treated for Wegener's!
    I take a similar drug myself, but only because my bone density score is off the scale - on the bad side.

  7. #17
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    Elephant, I started a thread awhile back called "Thoughts on Bisphosphonates." That would sum up how I feel about them! Jack has no option at this point and has to take them for his safety.

    I think your rheumy is showing good judgment by trying to get you off pred. Any reduction is good, and any amount of time off of it is very good. You can definitely be in remission without pred! I was off it for 2.5 yrs. I wasn't in remission, but I didn't have seriously active Wegs, either. Just "smoldering" Wegs. If we had increased my Cellcept, I think I would have been great. But many people maintain remission just fine without pred.

    Besides, I want some company in the "Dropping 1 mg a Month" club.

  8. #18
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    I second that Jack.

    Moyan it is very important to have a Wegs Specialist - like my Rheumy who for some reason is not responding - and a team that communicates - a GP, ENT, Neph, etc. ENT's don't have the training, knowledge, or experience with Wegs that a Wegs/Rheumy has. Typically I have found Rheumys to be the best at treating Wegs. Sangye may be able to shed more light on this area.

  9. #19
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    Nope-- that's what I woulda said!

  10. #20
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    You mean I read your mind Sangye?

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