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  • Auto Immune hymolyptic aneamia (AIHA)

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    Old 07-03-2007, 04:00 AM   #46
    woodmere
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    MissKris,

    Never heard of this Bactrim, but my Specialist has said that with the Prednisolone, you can pick up infections easily and if that happens she will give me strong antibiotics straight away. So far I have been lucky

    Last edited by woodmere; 07-03-2007 at 04:01 AM.

     
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    Old 07-03-2007, 07:35 PM   #47
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    I've been lucky too, as far as infections go (knock on wood). The Bactrim is just for prevention and that sounds like an pneumonia I would really like to prevent! Hopefully your numbers will go up soon. I want to be in the 10s! Well, ultimately the 12s, but any double digits will do at this point.

    Last edited by MissKris75; 07-03-2007 at 07:37 PM.

     
    Old 07-03-2007, 09:31 PM   #48
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    MissKris, do you take vitamin D with the calcium? It is necessary to help absorb the calcium. Also calcium needs to be split up during the day to be taken not more than 500 mg at a time. I was recently diagnosed with moderate osteroporosis much to my surprise and my hip is high risk.
    I have been on Bactrin. It is a good antibiotic strong like Keflex. Never heard of it though to be combined with predisone. Did you have a pneumonia shot? How long are you supposed to take it? I would be concerned about building an immunity to it and then what if you did get sick?
    I keep my hands away from my face to keep the germs away and I wash my hands alot. I have hubby use alcohol wipes on the work phone and keyboard before he uses it as other people sit at his desk too.

     
    Old 07-03-2007, 09:53 PM   #49
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel52, I am not taking any calcium supplements, but I sometimes drink calcium-fortified juices. As for the antibiotic, I asked my doctor about resistance and he said that most bugs are already resistant to Bactrim, but he regularly prescribes it to patients that are on Prednisone since pred can make you more susceptible to that kind of pneumonia (I don't recall the name). He didn't say anything about a pneumonia shot. Does a pneumonia shot protect from all strains of pneumonia? Perhaps he didn't mention the shot because whatever kind people on pred are susceptible to is not covered by it. I wasn't exactly thrilled about adding a new medication and going on an antibiotic in the absence of an actual infection, but if it's true that this antibiotic prevents this nefarious pneumonia, an ounce of prevention is worth a pound of cure. I guess I'm supposed to be on it until I taper from the pred.

    Last edited by MissKris75; 07-03-2007 at 09:56 PM.

     
    Old 07-04-2007, 05:15 PM   #50
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    I don't know much about the shot and what kind of pneumonia it protects you from. It is the shot that is recommended for the elderly. Hubby's doctor said it is good for 10 years I have heard 5 from others. I guess it is supposed to protect from the type of pneumonia that is often picked up in the hospital. That would probably be the bacterial. It wasn't recommended until his spleen was going to be removed. Public Health Dept could advise you on it.

     
    Old 07-18-2007, 12:44 PM   #51
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    I have AIHA, and I had my spleen out in 1995. I am on and off Pred all the time for my anemia, and I get a pneumonia shot every five years, but I rarely take antibiotics unless I have to, simply because my dr doesn't want me to build a resistance.

    I know they used to recommend preventive Penecillin for people without spleens, but I don't think they do anymore, and I've never heard of taking an antibiotic with Pred unless there's an infection.

    If I get a fever that goes above 101, I go to the doc. Other than that I ride it out. I want to make sure that antibiotics will work if I ever do get something my body can't throw on its own.

    Jill

    Last edited by japlopper; 07-18-2007 at 12:47 PM. Reason: forgot to address the question

     
    Old 07-18-2007, 10:14 PM   #52
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill, so you still have AIHA even though your spleen was removed? The dr told my hubby that he could now say he HAD hemolytic anemia and was cured. It was a bad spleen. Sure hope she was right.
    He is continuing to feel really well. His color is normal, no more dizziness, some fatigue but he's working. His tummy is still sore and he has one big scar which bothers him, but I don't care. He is healthy again.

     
    Old 07-19-2007, 04:25 AM   #53
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Hi everybody,
    I have been trying to find a common thread for the cause of AIHA, and have just been informed by a specialist in pharmaceuticals that a drug called Chloramphenicol can cause AIHA. This is commonly used in eye drops to treat eye infections. it may be a coincidence, but just before I got the AIHA I had problems with my eyes and had been given drops for them to clear an infection. When I got the aneamia for the second time, I had just had problems with my eyes again. Can anybody elsy remember if they had eye drops before they got their AIHA?
    My count has dropped again to 9.6 and the doctor has put me on a new medicine called Azathioprine 100 mg as she wants me off the prednisolone. Has anybody had any experience of this drug?

     
    Old 07-19-2007, 12:56 PM   #54
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel,
    Actually my AIHA developed after I had my spleen removed. I also have ITP, which is where my body attacks my platelets, which is why they removed my spleen in 1995. I didn't develop the AIHA until a year ago.

    From what I understand, once you have AIHA, you always have it, although you can be in remission and not need treatment for long periods of time. I've been having a devil of a time with it in the last year, but after a big bout of Prednisone, my hemoglobin is now 12.8. I'm hoping it lasts, because this last round of Pred really hurt my joints.

    Woodmere,
    I think that med that you're on is also known as Imuran, right? I've heard it takes awhile to kick in - my hema said it might be something to try for me down the road. The side effects I've heard about are nausea and hair thinnning. I think you're supposed to take it with food. I hope it helps you. I know Pred is no fun, but it is a magic bullet for me.

    Jill

     
    Old 07-19-2007, 08:42 PM   #55
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill, I am now curious to have my hubby see a new hemotologist. We just switched insurances so his former dr told him he will need to be followed up now and then for awhile by a new dr. I hope this ugly disease doesn't come back. I still am in awe when I see the difference in my husband's skin tone.

     
    Old 07-20-2007, 12:23 AM   #56
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Japlopper,

    Yes you are right it is called imuran also. I hope that you are wrong on the hair thinning as I have not got that much now!!!!. I have been on it for 4 days now and no sign of nausia thank goodness, but thanks for the warning.

     
    Old 07-20-2007, 01:00 PM   #57
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Hi:
    I too have AIHA, this is my third relapse in a year. Last May I had it and went on high doses of pred. 60mg and then tapered off and that lasted about 3 months, then levels started to drop. Went back on pred. same thing, we even tapered at a snails pace. Now levels started to drop in June and I'm back to low hematocrit. That's how we measure it, my crit is 25. I'm not really responding to the pred as well this time. It's so frustrating to be on this pred. it really sucks. It makes me miserable and jittery and I have a really really short fuse. I have two young children that really push my buttons and it makes it really difficult. I'm thinking of trying cellcept once my crit gets up or maybe if my numbers don't start to improve possibly the i.v. rituxan. Has anyone tried either of these meds? I know they are fairly new to treating AIHA, but my hemo has used them both. He'd like me to have my spleen out, but that is a last option for me. I haven't heard good things about the results of spleenectomy and it's only 50 or 60% cure rate.
    Any info is always appreciated. I just found this website and so far I've found alot of information.
    Thanks, Karen

     
    Old 07-20-2007, 01:19 PM   #58
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Hi Woodmere:
    I have had the swooshing in my head in the past, it was so annoying. It was when my hct was really reallly low, like 15, I should have been hospitalized, but I wasn't. I am low again and suffering with high doses of pred. I take benadryl at night to sleep. It really helps and I hope it's not harmful. As soon as I am off high doses of pred. I don't need it. I am looking into taking cellcept or possibly rituxan in stead of spleenectomy.
    I wish you well, keep me posted.
    Karen

     
    Old 07-24-2007, 05:07 PM   #59
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Another AIHA story...

    I'm now in the midst of my third relapse also within a year - diagnosed in July 06, started 60 mg/dy Pred and quickly got it under control. Another relapse in December, Pred slower taper that time, and my body kept up until about three weeks ago (I was off Pred since May). July 3 Hemoglobin was 12.2. July 13 it was 8.4!

    This time around Pred 60 mg + Rituxan. I've had two infusions, feeling better, but still pretty whooped. The plan is for 4 Rituxan treatments, taper the Pred, and see what happens. High hopes for Rituxan! Prednisone is no fun for sure.

    Rick

     
    Old 07-25-2007, 02:40 AM   #60
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    I have not heard of Rituxan, What is it and what does it do?. Also My doctor wants me to have my spleen out and I have been avoiding it, it will be a last resort as it is not so successful. Do any of you know what caused your AIHA? I have been trying to find a common thread but so far no luck.

     
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    ambien, cellcept, folic, fosamax, imuran, potassium



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