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  • Auto Immune hymolyptic aneamia (AIHA)

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    Old 07-25-2007, 06:08 PM   #61
    RickB14
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Woodmere

    Mine is the "Idiopathic" kind, so they don't know the cause. Rituxan is a relatively new drug, given by IV, which goes after the B-Cells - the cells giving the "orders" to destroy red blood cells. It's used more commonly in cancer treatments, but has shown promise for fighting AIHA. I think it's also used for treatment of extreme arthritis, another auto-immune disorder.

    That's about all I know. I'm sure you can find more about Rituxan (or also called Rituximab) on-line or from your hemotologist

    Rick

     
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    Old 07-26-2007, 05:47 PM   #62
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    I know quite a few people who have had Rituxan, and it has worked well for their autoimmune troubles - like immune thrombocytopenia and I think Lupus.
    One poster from the Blood disorders board said Rituxan put her into remission, so it's something to look into.

    If your insurance gives you grief and will not pay, you can go to the company and they have a program that they will give you the medication for free. There's an application process called, I think, SPOC. If anyone needs more info about that, I can look it up for you. I've never tried Rituxan, because I worry about having no spleen then having the Rituxan, but if I had to choose betweeen Imuran and Rituxan, I might ask for Rituxan.
    the long term side effects of all these meds scares me - some have higher risks of certain cancers, which really scares me, because the reason they found my AIHA in the first place was becasue they thought I had lymphoma. so naturally I'm always worried I'll develop it.

    Jill

     
    Old 07-26-2007, 09:58 PM   #63
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill,

    I don't think Rituxan has any known long term side effects - they may very well exist, but there's just not enough history with the treatment yet. At least that's what my Doc tells me.....I'd be interested if you have more info on it

    Thanks
    Rick

     
    Old 07-26-2007, 10:39 PM   #64
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Woodmere, I don't think we will ever find the cause of the anemia. I asked the hemotologist if she thought the artificial hip cup breaking down could cause it and she said she didn't think so. I detected a bit of a snicker. I guess we are just relieved hubby didn't have non-hodgekins like the dr suspected.
    Hubby will see his new kaiser hemotologist in about a month to get his blood checked. Right now he is feeling great. He played a round of golf and pooped out at the 15th hole. Heck he was too tired to even drive to the golf course when he was so sick so.....that was fantastic.
    I tend to herd him away from people who don't cover their mouth when they cough, kind of nervous about him not having a spleen.

     
    Old 07-27-2007, 02:13 PM   #65
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Rick,
    Well for me, without a spleen all immunosuppressants are scary. Rituxan wipes out those B memory cells. So, let's say I have an immunity to some illness, then I get Rituxan, it wipes out those cells, then I get that illness, I have no spleen to help fight it again, and I get much sicker - or so I fear - it may just be me being extra paranoid. A few years after I had my spleen removed, I got chicken pox, and I was as sick as I've ever been. It took over - it was very, very serious.

    But if I still had my spleen, I'd choose Rituxan, no problem. Unfortunately, Rituxan wasn't available in 1995. I sometimes regret having let the drs talk me into having my spleen removed. I was told it would cure my immune thrombocytopenia (ITP), and it did not. And then I even went on to develop AIHA after my splenectomy. So immunosuppressants are still part of my life, unfortunately. Which scares me.

    I do know many people who have been helped by Rituxan. For some, it is like a miracle.

    Jill

     
    Old 07-27-2007, 02:36 PM   #66
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill,
    Thanks - sounds like my docs attitude that a splenectomy is the last resort is probably the right one.

    All of us with this disease share your fear of any infection, I think. I've been lucky so far. Hopefully Rituxan will go after the nasty B-cells and leave a few good ones for me

    It's tough - facing a life long maintenance diet on and off of Prednisone is a depressing thought. But it's a possibility for anyone with AIHA I guess.
    Rick

     
    Old 07-27-2007, 07:01 PM   #67
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Rick,
    Yes, absolutely. And do fight to keep your spleen(s) - many of us have multiple spleens. Years after my surgery, I found out that I had an accessory spleen. They left it there, because they weren't sure they could find it to remove it. So much for confidence in their surgeons.

    With a spleen, I think Rituxan is the best choice, actually even over Pred. Sure, it's a pain to get through insurance, but there's no tapering, no horrible side effects beyond the day of infusion, no mental changes, no weight gain.

    I've been on Pred off and on since 1990. I did get a major remission between 1995-2003, but since then, it's been off and on it. The last stretch was a long one, and the taper was a bear. But I'm three weeks off and holding at good counts. But of course I just caught a cold. So I'm worried I'll relapse now into my AIHA. I'm already watching for signs - elevated heart rate, breathlessness and tea-colored urine.

    What are teh signs you watch for, ie, how do you knkow your anemia is back, and how long do you wait before treating? I start treating when my hemoglobin goes to 11. At 11, I get breathless even when talking.


    Jill

     
    Old 07-28-2007, 06:08 AM   #68
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    See next message - error

    Last edited by woodmere; 07-28-2007 at 06:12 AM. Reason: error

     
    Old 07-28-2007, 06:10 AM   #69
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Dear All,

    Thanks for the advice about Rituxan. I am lucky as here in the UK if the drug is on the National Health Service list I an get it from my doctor on prescription.

    Japlopper,

    You ask about signs that the AIHA is coming back, for me a get breathless and I get the whoosing sound in my left ear (always the left - Weard!!). I also go very pale and friends start asking if I am alright. Currently I am still going down on my blood count and still on both Pred and this azathioprine (Imuran). My Doctor says that it can take upto 2 months to be effective so I am not looking for a quick improvement.

     
    Old 07-28-2007, 07:26 AM   #70
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    All,
    A quick update. I had my 3rd Rituxan treatment yesterday - no side effects whatsoever! - my HGB is at 9.1 and on the improve, feeling much better. Hard to say whether it is the 60 mg Pred or the Rituxan, the plan is to taper the Pred faster this time and see if the Rituxan does its job.

    Jill,

    I see my hemotologist every 1 or 2 weeks, even when in remission, so I let him determine when to start treatment. This last time, my urine got very dark, and I was feeling pretty gassed, worse every day. I was just surprised how fast it can happen, after my body had kept up for 8-10 weeks off Pred. Oh, one more thing, my hemo uses Retic count to see if I am hemolyzing - and it has been above normal the whole time. But when HGB starts to really drop, the retic count goes through the roof (say 1% is normal, 2% means I'm hemolyzing but body is keeping up, 7-11% means things are going downhill fast!).

    I'll try to keep the board updated as things progress....
    Rick

     
    Old 07-28-2007, 06:02 PM   #71
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Woodmere,
    I get the whooshing too. But now, I found out that when my AIHA is active, I need to be getting B12 shots too. So that tends to help, but that is definitely a sign. I didn't know about the B12 thing until someone on another board tipped me off. I was amazed how much better I felt, even with lower hemoglobin when I started taking prescription folic acid and B12 shots.

    Rick,
    I know my hema used the retic count in the beginning to diagnose me, but I don't know if she does that test every time. Is that part of a CBC or is that special?

    Jill

     
    Old 07-28-2007, 07:01 PM   #72
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill,

    Retic is separate from the CBC, and it takes a few days to get the result - not the 10 minutes for the CBC. So I usually find out what it was at my next appointment. Still, I think it's highly indicative of the rate of hemolyzation. It measure the amount of new RBC's I believe?
    Rick

    Last edited by RickB14; 07-28-2007 at 07:04 PM.

     
    Old 08-02-2007, 12:43 PM   #73
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Rick,
    Ah, ok. Here's a question for you since they keep a close eye on your retic count. Have they ever found that you hemolyze while on low dose Pred? I always wondered that - although my dr said no. She said that any level of Pred keeps it from happening. But if that's true, why go on high doses at all?

    I also would like to see what's going on after I'm off Pred for a few weeks. Right now I'm on every 4 week visits, but here in week 3 without a count, I think it's going down. I guess what I'm saying is I'd like to know how long after Pred that my counts actually stay good. does that make sense? Right now my pulse is going up and my BP and my sleep is disrupted. I think those are signs that it's happening again, but I won't know because they are trying to stretch out my visits.

    It's a very frustrating condition.
    Jill

     
    Old 08-05-2007, 06:22 AM   #74
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Hi Jill,

    No question, it is very frustrating. If you think you are hemolyzing, I think you should see your doctor immediately!! I made the mistake if waiting an extra week for my appointment, and I was amazed at how steep the cliff was. Not trying to scare you, but don't be afraid to move your appointments up if you think something is going on.

    When my Pred dose went down, below I think about 20 mg/day, my retic count showed that I was hemolyzing, but not crazy high. My body just kept up for a long time - after I went off Pred altogether, it took about 2 months before my body could not keep up any more, and my retic went through the roof. That's pretty much where I was at 4 weeks ago before this latest round of treatment.

    Last Rituxan treatment tomorrow. Feeling good. I'll keep the board posted.

    Rick

    Last edited by RickB14; 08-05-2007 at 06:25 AM.

     
    Old 08-06-2007, 07:40 AM   #75
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    Re: Auto Immune hymolyptic aneamia (AIHA)

    Jill,

    It is amazing how quick your level drops when it comes back. I was fine at a level of 14 for a few months and then within 4 weeks dropped to 8. My doctor has agreed that I can have a blood test regularly after they get me back to normal and off the medicine (every 2 weeks). Hopefullly that will be soon enough to alert me that its coming back again.

    Last edited by woodmere; 08-06-2007 at 07:41 AM.

     
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