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Thread: Finally getting off Preds

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    Thumbs up Finally getting off Preds

    Went to my Rhumy last week and after looking at my blood work the sed rate was at 16 and has been close to that for some time now and he is taking me off of the Preds. It is really a good feeling to know that I am finally getting off some of the meds but it is also kind of scary too. It is like looking over your shoulder and trying to make sure that our BFF is not sneaking back up on you and getting ready to jump back onto your back. Hopefully it will hold up and I can start getting off of the Immuran soon.
    Hopefully every one has started off with a good New Year.

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    Great news if you can manage without prenisolone. How much are you taking and for how long? It could take you some time to get down to zero safely.

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    Jack I first started on Peds when the doctors diagnoised me with BOOP in March of 07 and was put on 40 mg a day. After going through 11 months of treatment for the wrong thing and it was determined that I had Wegs I was put on 60 mg of Preds along with the Cytoxin in Feb. of 08. My Rheumy has been slowly backing me off of the Preds for the last year. I was on 2.5 mg every other day for the last 2 months. I went to a wegs specialist back on the first of Oct 09 and she has been talking with my Rheumy and decided it was time to step off of the preds.

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    That does not sound like very much at all. Hope you can make the final steps without problems. I would think there is a very good chance that you will.

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    Being on 2.5 mg of prednisone is not much at all. Wish you the best and hope it works out for you. Keep us updated on how your doing.

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    What fantastic news, Dumpy! I would think if you've done well at 2.5 every other day for 2 months, you'll be just fine once you stop it. I'm SO glad you saw that Wegs specialist.

    [ I would add that while we generally think 2.5 mg is not much, it really depends on the person and their pred history. I can't even tolerate 5 mg/day-- it acts like a much higher dose. Even my Wegs doc was amazed. I developed a moon face and supraclavicular fat pads after taking 5 mg for only 2 days. I had been off pred for 2-1/2 years by then!

    Thankfully, he understood and accepted what was happening, and put me on "only" 4 mg/day. Even so, if you saw my body changes with that, you'd swear I was on 40 mg or higher. During the 4 weekly ritux infusions, the 100mg IV solumedrol (equiv 150mg oral pred) nearly killed me. I was so weakened by it. ]

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    Sangye I will always be grateful for all of the nagging you guys did about seeing the specialist that made me step back and decide to go and make that visit. It really gave me a lot of relief to know that I really had 2 good doctors and every one was on the same page. Doctor Fessler did say that there was a lot of cases where the docs had really caused a lot of havack with peoples health by changing medications at the wrong times and the wrong directions and caused a lot of damage before it could be corrected.

    My Rhuemy did a good job of backing me off of the Preds and was always cautious to err on the safe side. He took over a year to back me off of the preds and was doing blood work once a month while doing it to make sure it was all right.

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    I'm so happy to hear that your rheumy has given you such great care. I have a feeling you're going to be feeling great in no time.

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    Hi, I don't quite know where to put this, but it might be interesting for somebody. Suddenly I lost my appetite. Totally! Ignored it since I knew I needed to lose weight and thought my subconsious was at work. When I finally went to the lab and learned that kidneys were down to 50%, doc immidiatly sent me to the hospital where I was diagnosed within a day. Now that I know more, that stupid sinusinfection that did not feel like any I had had before and the blocked ear where the spec could not find anything were symptoms of WG. Never having been really sick I trusted my doc (another) to do the right thing but...........Had she listened to my request for a referral to an ent.....

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    Quote Originally Posted by moyan View Post
    ....Had she listened to my request for a referral to an ent.....
    A referral to an ENT consultant could have resulted in the same treatment that both I and Doug received from them - misdiagnosis and a trip to Death's door!

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