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  • Auto Immune hymolyptic aneamia (AIHA)

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    Old 06-22-2007, 05:57 AM   #31
    woodmere
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel52

    Good news about your husband, I hope to catch him up soon. I have just reached 10.7 and climbing again. Tell him not to work too hard as I am sure that stress has a factor in this as well. Good luck.

     
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    Old 06-22-2007, 09:06 PM   #32
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Woodmere glad you are getting up there with your blood level. Hubby continues to feel well.

     
    Old 06-24-2007, 08:14 AM   #33
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel52 and Woodmere, that's great news! My Hgb, on the other hand, went down to 6.4 and I had to increase my pred dose Still trying to get this thing under control.

    Last edited by MissKris75; 06-24-2007 at 08:15 AM.

     
    Old 06-24-2007, 07:19 PM   #34
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Geez Kris how do you function? My hubby was so light-headed and weak. Dr said he wasn't having enough oxygen carried through the blood. Hoping the predisone increase works for you.

     
    Old 06-24-2007, 10:05 PM   #35
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel52, I wondered the same thing. My doc says it's because I'm relatively young (31) and my body adapts to the low hemoglobin. But, jeez, I'd think I'd have to be a child or teenager to adapt to a level that low. I get winded going up the stairs, but other than that, I do just fine. While it's great not to be flat on my back, this adaptation makes it tough to tell when my hemoglobin level starts to improve. In fact, when I went last Tuesday I thought for sure it had gone up. Imagine my shock when I found out it had dropped from 8.6 to 6.4! What the doctor ended up doing was have me take 60 mg on Tuesday, 40 on Wednesday and Thursday, and 30 daily from Friday until my next appointment this coming Tuesday, in hopes that the initial high dose will give my immune system just the kick in the pants it needs to straighten up and fly right Let's hope it worked and I can stay on 30 mg. 40 wouldn't be too bad, but I don't relish the idea of going on 60 daily and risking more side effects. However, I'll do whatever it takes to get this under control.

    Last edited by MissKris75; 06-24-2007 at 10:08 PM.

     
    Old 06-25-2007, 06:52 PM   #36
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Geez Kris I hope it works for you. I would be cautious about being on predisone for a long time so many side effects, like osteroporosis. Hopefully like you said it will be to just start kick things working again.
    My hubby went back to work today, even rode his motorcycle in and did well but was very sleepy when he got home. He works 10 hours and it is an hour commute each way so I can understand that he would be tired. However, he did go for a short walk around the block with our chihuahuas. He certainly couldn't do that before.

     
    Old 06-26-2007, 07:41 AM   #37
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Glad to hear your hubby's doing so much better. About the pred, believe me I want to be on as little and for as little time as possible. That's part of what is so frustrating about this disease, having to increase doses and worry about more side effects. I have an appointment today to check my Hgb to see how it responded to the "kick start" dose. I sure hope it goes up; I'm so nervous right now

     
    Old 06-26-2007, 10:45 AM   #38
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Just got back from the doctor's appointment. Hemoglobin's back up to 8.5 Looks like the kick start worked and I don't have to increase the dose again. I'm so relieved.

     
    Old 06-26-2007, 07:58 PM   #39
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Kris that is wonderful! What a relief eh? Keep up the good work. When will they check it again?

     
    Old 06-26-2007, 09:53 PM   #40
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Thanks, Mel52 They check again on Monday. Fingers crossed...

     
    Old 07-01-2007, 05:45 PM   #41
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    MissKris,
    I'm on the end of taper of Pred for my last bout of AIHA. I feel your pain, and I know how much it stinks to be on it! It seems each time I have to take it, I have worse side effects. And getting off of it is the worst.

    But at least it works!


    Take care,
    Jill

     
    Old 07-01-2007, 10:16 PM   #42
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Thanks, Jill I go tomorrow morning for a follow-up to see if my hgb is still going up. Each week is an emotional rollercoaster, waiting to find out where that number will be. Fortunately, the anemia doesn't interfere too much with my ability to function. It would be nice to have a little more energy, but things could be a lot worse.

    Best of luck to you in your pred taper.

     
    Old 07-02-2007, 02:06 AM   #43
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Misskriss,

    this is so frustrating the up and down of the blood level. I seem to have stuck at 10.7, but at least it is not so low as yours. The doctor has now given me treatment for my bones in case of osteoporosis as the long term effect of the steroids can do this to you. I am now on 20 mgs a day, but I feel that I may need to increase this to push up my blood level higher.

    Hope yours continues to get higher. I find that if you try and do too much physically it has an effect of pushing you back.

    Just a question for everyone. I had this problem 18 months ago and got back to normal and the doctor said that it was unlikely to come back but it did. Has anybody else got back to normal only for it to return after 6 months?

     
    Old 07-02-2007, 04:40 PM   #44
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Just a question for everyone. I had this problem 18 months ago and got back to normal and the doctor said that it was unlikely to come back but it did. Has anybody else got back to normal only for it to return after 6 months?[/QUOTE]

    Woodmere,my hubby had a hip replacement in August. Even though his blood count was low, he recovered quite well. In January, his blood had gone up to 11 and the doctor was so pleased she told him he could donate his own blood for his hip replacement surgery. Two weeks later he went to do so and his blood had dropped too low and he wasn't allowed to give blood. This time he didn't recover and refused a transfusion in the hospital. The orthopedict surgeon said it would take about a month to build the blood back up. It didn't rebuilt and that was when the predisone was prescribed. He was so jaundiced and weak. I wonder what would have happened if surgery hadn't been involved.

     
    Old 07-02-2007, 08:19 PM   #45
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Woodmere, mine is stuck in the 8s. I went in today and it was 8.2, so another three days of "kickstart" doses to get it to jump up again. I'm really getting worried about becoming prednisone dependent. Since I've been on pred for 6 weeks, my doctor prescribed a sulfa antibiotic called Bactrim to prevent some kind of pneumonia. Anyone else take this w/ prednisone?

    Also, about the osteoporosis, my doc said that I had too much calcium in my blood. I thought it was good to take calcium while on prednisone to help prevent osteoporosis. I have a small frame, so I'm particularly concerned about this. Next time, maybe I'll ask about whether I should have a bone density test.

    Last edited by MissKris75; 07-02-2007 at 08:23 PM. Reason: add more information

     
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