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  • Auto Immune hymolyptic aneamia (AIHA)

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    Old 06-04-2007, 10:57 PM   #16
    woodmere
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Very bad I am afraid, dropped from 10 to 8.8 in a week. The doctor again suggested spleen removal and increased my dosage back to 60mgs a day. Not good. She has suggested also trying a different drug which she will tell me about next week.

    There does not seem to be any research being carried out as to the cause of this illness because it is a quite rare disorder. I am cosidering setting up a website to support sufferers and to try and gather historical data. Do you think people would welcome & support this?

     
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    Old 06-05-2007, 08:19 AM   #17
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Woodmere,
    Ah, darn it!
    8.8 is bad. Was the other drug Imuran that your dr mentioned? That's what my hema said would be our next thing if Pred ever stopped working, but it scared me because when I researched it online, it listed side effects of cancer. The other two drugs that can be tried are IVIG - intervenous gamma globulin - the way that works is that I think it's made of a bunch of plasma that has other people's immunity and sometimes it causes your system to stop eating your red blood cells. The other drug is that Rituxan, which is expensive, but it seems to be pretty successful. There's a woman who used to post here who had big success with it.

    The other thing they can do if you get really low is a shot of Procrit. It boosts your bone marrow to up the production of red blood cells. Your body will continue to destroy them, but at least you have more, so the hope is that you start out with more, so you have more left.

    I'm so sorry to hear about your counts. When will you get another one?

    Take care,
    Jill

     
    Old 06-05-2007, 03:02 PM   #18
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Woodmere, my hubby's was not as low as yours but it was a steady decline. We didn't want his to turn into a medical emergency and end up having transfusions. He wasn't eager to have his spleen out either, but the dr reassured us a spleen isn't necessary after the age of 10, however, it does help fight infections so hubby will have to have a flu shot and continue with having pneumonia shots. If he gets a sore throat he needs to see the dr and get on antibiotics.
    For him getting the spleen out became a necessity as it was enlarging. We were told the length of time he had the anemia and that it wouldnt resolve, he probably had a spleen lymphoma as Lupus was pretty much ruled out. He had already had a MRI of his body and a cat scan that were clear but it was decided to do the bone marrow, liver biospy, slides and a visual while he was opened up. As I posted earlier everything came back clear. It is actually a huge relief that they did go through him. My best friend has stage IV pancreatic cancer (no anemia) Opening him up was the best way to check him out. He is feeling better than he has for 18 months.

     
    Old 06-06-2007, 01:44 AM   #19
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill,

    I go back next Monday and will find out what the alternative medicine is and do a bit of research on it. She wants me to stay on the 60 gms prednisolone until I get up to 12 and then change to the different medicine. She has also suggested a bone potection programme as seemingly pednisolone can eventually cause ostoporosis (is that spelt right).

    Mel52,

    Thanks for the info, maybe if I have to have the spleen out it may not be so bad. Good to hear that your husband has had such a good improvement. My spleen is not enlarged as yet, so we will see how it develops. Thank you and Jill for your help.

    Regards
    Ken

     
    Old 06-06-2007, 12:10 PM   #20
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel,
    Glad to hear everything came back clear on your husband. Sounds like splenectomy was the right choice for you. The day of my surgery, my spleen was enlarged as well. To me that's a valid reason to remove it. Some drs are quick to remove it before exploring or informing the patient - that's not good. It took me about 6 weeks after surgery to feel totally better. Spitting was tough after surgery, lol, brushing my teeth really was a challenge, as the incision was sore for a long time. Also, no one was allowed to make me laugh really hard as it hurt too much.

    Woodmere,
    Yep, I have been told to watch out for osteoporosis. I just had an MRI done on my hip, as it's been giving me lots of pain. They want to make sure the pain is muscular and not anything related to the bone. My followup appt is tomorrow with my hema. I think my counts are good - I'm tapering from Pred right now, so we'll see. Tomorrow is my day for my B12 shot, too/

    Everyone keep posting and hang in there.

    best,
    Jill

     
    Old 06-06-2007, 01:40 PM   #21
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill I had an xray of my hip because it was hurting but nothing showed. I then had the scan for osteroporosis and ta da I have it more in my hips than my spine. I had horrible reactions to the drugs prescribed so I am going to try the nasal spray. I am very glad my hubby was only on the predisone for a short period of time.
    I am trying to find any information regarding causes of the hemolytic anemia. I researched the pubmed.gov site for case studies to see if there is any link between artificial hips wearing out and the anemia. I didn't find anything but wish I could find a dr who was interested in collecting information for future tracking of cases. There doesn't appear to be any foundations for hemolytic anemia. darn...

     
    Old 06-06-2007, 02:58 PM   #22
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel,
    I think mine started with an exposure to a new mattress. We got one of those foam type mattresses last May. It smelled funny, and it gave both my husband and I bad headaches, but we didn't think much of it - figured it would just air out, but about two weeks after sleeping on it, I got a fever, extreme joint pain, baaad headaches, my urine turned dark, and then I turned yellow all over. My liver functions were so bad, that my dr thought I had a block in the artery going into my liver. I had a liver ultrasound, and it was fine, but it was my liver being overwhelmed. My immune system was destroying my red blood cells so fast that my liver couldn't handle it.

    So whether that was what it was or not, it was awfully coincidental. My dr says that extreme allergic reactions can throw your body out of whack, especially for those people who are sensitive to them. Now I try to steer clear of chemicals, including household cleaners.

    I think you're on to something when you say your husband's implant might have provoked your husband's immune system.

    Jill

     
    Old 06-06-2007, 09:54 PM   #23
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Mel52 and Jill, your ideas about what brought on hemolytic anemia are very interesting. I think mine might be somehow related to my ulcerative colitis, since both are autoimmune diseases. I had my colon removed shortly after diagnosis of UC because the colitis got very bad very fast and no medicine could control it. With UC, a colectomy is considered curative, so it's like I don't have UC anymore, but the autoimmune tendency is still there. Guess my immune system got bored without a colon to attack, so it started going after my RBCs. Bad, immune system! Bad, bad bad! LOL

     
    Old 06-07-2007, 07:01 AM   #24
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Regarding the osteroporosis issue. When I first started taking prednisolone I was automatically prescribed 5mg of folic acid a day. 3 months into taking prednisolone my Consultant started me on once weekly 70mg of Fosamax (alendronate sodium) which is used for the prevention of osteoporosis.

    It's not easiest of drugs to take as it must be taken at least one-half hour before the first food, beverage, or medication of the day with plain water and you can't lie down for at least 30 minutes. At his suggestion I also took supplemental calcium and vitamin D. Was on the pred for well over a year and have been in remission on no medication for over 2 years. Bone density test have come back as normal.

    A lot of the web sites I found when I was researching AIHA were veterinary ones- -apparently we have more canine fellow sufferers than human

     
    Old 06-08-2007, 02:26 AM   #25
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Just to join in the debate about what might have caused this problem, I have been trying to see what could have triggered it with me. Unfortunately I have had nothing in my past that I can think of. I have been perfectly healthy until this occurred. With my job I travelled around the world and I wondered if it had been triggered by an insect bite in one of the tropical countries, but the doc said not possible. The only other thing I can think of is stress as my job demanded alot and the hours were all over the place which also meant being very tired sometimes.

    My Doc says that my antibody type is anti-K which is usually from a blood transfusion, but I have never had a transfusion in my life either. She is stumped on this. Seemingly we are one in a million people with this disorder, obviously it doesn't excite a researcher enough to do some investigation on us.

     
    Old 06-08-2007, 04:49 PM   #26
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    It is frustrating to not know the cause though it is a relief to know it wasn't cancer or lupus. I looked through the government site and searched case studies but the closest cause to hemolytic anemia from prothesises are a heart valve replacement.
    Personally I think anything that triggers a reaction such as allergies could cause it. The body is forced into overdriving trying to protect or fight off the foreign object.

     
    Old 06-08-2007, 04:58 PM   #27
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill, One reason I think a prothesis can trigger a reaction is because I was one of "those" who had breast implants way before the media exposed the problems. I was fine for about 3 years and one day I came down with a flu that didn't go away. I had rashes, body aches, my hair was falling out and developed extreme allergies to everything. I was so fatigued. One breast was red and sore but I was told over and over nothing was wrong and I was one of many hysterical women who had just found out the implants weren't FDA approved. Long story short, after being ill for 5 years, the media broke the stories and I had them removed. I had a rupture. My body didn't seem to like the silicone, acitone, formalgahide, platinum,benzene to name a few ingredients. My pathology indicated giant histiocytes attached to the implants. I was told they were trying to fight off a foreign object, causing an autoimmune reaction i.e. overdrive. That is why I think there can be a connection with the hemolytic anemia and prothesis or allergies.

     
    Old 06-11-2007, 10:08 AM   #28
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    I agree - I think anything that puts our immune system in overdrive could cause it. My dr said she thinks some people are more chemically sensitive than others. After the mattress deal, I researched and found that mattresses are treated with benzene, which is toxic! For me it was a viscious circle. I'd get up in the morning, after being on it all night, then during the day, I'd feel crappy, and then, go take a nap. Essentially, the worse I felt, the more I stayed in the bed. Of course we'll never know for sure, but we did get rid of the foam mattress. We returned to our old sagging mattress, and put the newer one in an extra bedroom to air out. I just don't want to take any chances now.

    Mel - I am so sorry the drs didn't listen to you when you thought there was a problem. It worries me that drs are still using silicone for implants. It surprised me to find out that it's still being used. My friend had implants a few years ago, and she got the silicone. They made her really happy, and for that I'm glad, but I worry about the silicone, long term.

    On the anemia front, my hemoglobin is holding at 12.8! Yeah! And I'm now tapering down to 5mg. It's not as bad as I thought it would be, but I just hope I can get off the Pred for awhile. My hip pain they think after having an MRI is muscular. They think the Pred weakened my muscles around my hip, so I'm going to physical therapy for it, which I am happy about.

    Jill

     
    Old 06-11-2007, 08:01 PM   #29
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill, 12.8 wow terrific. I bet you are feeling better and will be glad to get off the predisone.
    I never knew that mattresses are treated with chemicals. We have a fairly new one also. I do have it wrapped in a seal though to keep the dust mites at bay.
    Hubby had his staples taken out today. He feels so much better. The 19th is his appointment with the hemotologist and his blood will be tested. It will be interesting. I received a copy of the pathology report. Thankfully the bone marrow test was done, otherwise there would be questions about lymphoma. He does have rare Howell-Jolly bodies. Haha that is one I never heard of before, but it has to do with the shape of the red blood cells

     
    Old 06-19-2007, 06:28 PM   #30
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Hubby went back to hemotologist today for post-op check-up on his blood. His HGB was 12 so the doctor said he is fine now. He needs to have his blood checked now and then but she said he can now say he HAD hemolytic anemia. It is just so nice to see his skin be a normal color instead of yellow and pale. He's going back to work on Monday.

     
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