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Preds (What is the replacement)
Haven't posted in quiet a while but i try to check in when i can. i got off of the preds last year around this time and off of the immuran shortly after. Did well for awhile then the first of December started with shoulder pain which wasn't to bad then right before Christmas both of my knees started to hurt with alot of soreness. Got a big present for Christmas and had to get back on Preds (60mg) and Immuran (150 mg).
My Doctor started me back off the Preds again the first of June and 3 weeks ago I started with some soreness in my hip which has increased to the point that I almost couldn't walk. Did some blood work Friday and found out that my BFF is back. My Doc has put in a call to the Weg specialist that I went to in 08 to make sure that they both agree because he wants me to get off of the Preds because I have been on them for almost 4 years. What are the options now. This stuff drives you nuts with all of the suprises.
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Dumpy, I'm so sorry to hear this. Have you ever been on just imuran (no pred)? Maybe that's what they'll do once you get into remission again. I'm happy that your doc contacted your Wegs specialist for his opinion. Hang in there. Hopefully they can get things under control easily and quickly.
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Yes for awhile. His plans were to get me completely off of the Preds this time and leave me on the full dose of Immuran. Just never got off of the Preds, I am down to 15mg every other day. What do they use to replace the Preds with?
The Wegs specialist is a she and very good. I'm glad that my Doc made the call to her which lets me know that he has my best interest in mind.
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As far as I'm aware, Pred has no substitute other than steroids in other forms. It would be great if you could get off them because the long term consequences of their side effects are so bad, but if the Wegs can't be controlled without them you don't have an option.
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If you're only on pred because your adrenals are dependent on it (ie Wegs is controlled 100% by the immunosuppressant), then they can switch you to hydrocortisone. It's closer to the cortisone your body makes.
I don't think that's your situation right now, Dumpy. It sounds like active Wegs which requires both pred and imuran.
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I ditto what Sangye said.
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I just hope that Dr. Fessler responds to my Doc before Friday so what ever the changes are they can begin. The joint pain really hasn't been any fun. Sangye I know you are right because the first time it flared there are so many simularities from the first flare and this one but also a lot of difference too. Hopefully all of that makes sense. I'm just glad that all of you guys and gals are here to talk to.
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I'm so sorry you're in pain. Wegs joint pain is truly awful.
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For what it is worth, my experience was that Wegs joint pain was there all the time, but gave the impression that if you could just find the right position to lay in it would go away. No such position exists!
Joint pain that goes with Pred (too much or too little in my case) would subside when resting, but then it would be very hard to get moving again.
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When I had pred-tapering pain it would hit even at rest. It would often affect a number of joints at once or rapidly move around, as if someone were firing at me. It felt more like flu pain to me.
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