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  • Hemolytic Anemia

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    Old 08-03-2005, 06:55 AM   #16
    jbee6
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    Re: Hemolytic Anemia

    Hi All It's me again, Well the Mabthera - Rituximab treatment didn't go so well....after two treatments something went dreadfully wrong....I was hospitalised and my haemoglobin went down to 54....blood transfusion after blood transfusion in Rocky hospital followed by a trip to Intensive Care in Rocky and Royal Flying Doctor flight down to Brisbane...Can't remember about a week and half of my life as they put me on amnesia drugs in Intensive Care....they had to drain my lungs of fluid which had some kind of infection like pneumonia and the doctors are still baffled to know what caused it. After waking up in Brizzy with no idea where I was they couldn't treat the AIHA or give me any more blood once it (haemoglobin) had creeped up to 70 as otherwise I would just start haemolising rapidly again. They had to treat the infection first. After about a week in the Mater hospital the infection subsided and they could start treating the AIHA with prednisone yet again (100mg)...the very drug the doctor was trying to get me off in the first place with trialing the mabthera. They now have me on a combination of Cyclosplorin a drug they give to transplant patients, prednisone weaned to 50mg now and imuran plus many more tablets to combat the side effects of the prior mentioned ones. They made me stay in hospital for 4 weeks this time and then stay down in a motel close to the hospital for a following 2 as an outpatient. But I have good news and its about time as my family and I have been to hell and back this time. It seems that the cyclosplorin is working as my haemoglobin has slowly but surely crept its way up to 115. I'm just worried about when they start tapering the steroid yet again. They can't keep me on it cos I'm 24 and the doctor reckons I'm gunna be a frail old lady if he doesn't get me off it.

    I've had a splectomy, been treated with prednisone and imuran. They checked this time to see if the spleen had re-grown it hadn't. They still haven't ruled out giving me the other 2 doses of rituxan/mabthera before coming home. I was so hopeful in that drug Angelindisguise and think I would still give it a go if this doesn't work out in the long run. Has anyone had to go through all these different treatments?????? Apparently there are other things they can try still but may effect my fertility...So I'm now thinking seriously about getting some eggs frozen....

    I was living a normal life...a stressful one at that being a teacher. Was wondering if anyone else was going through extrememly stressful periods in their lives when they relapsed of were diagnosed as I was.....I just wanna live a normal life...do any of you fellow sufferers live active lives with full time jobs?

    This time its floored me like never before I'm off work for the semester even though my blood counts are up...I'm was seenig a physciatrist in Brisbane and am on medications to help sleep and combat the depression. Has anyone been through all these treatments?

    If anyone wants to chat about their history with this disease please...I'm feeling a little like the only one out there who tried everythin and now more.

    I know I should be happy the drug is working.....but soo scared about tapering the steroid again.

    Looking forward to chatting with anyone.

    Jae

     
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    Old 11-08-2005, 07:29 PM   #17
    Jekke
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    My baby has Hemolytic Anemia

    Lori,

    I just read your posting on haemolytic anaemia and also am trying to find out everything about it. My baby daughter has it as a result of a much more serious disease called Pyruvate Kinase(PK) deficiency. She is missing this important enzyme (PK) in her blood that keeps her red blood cells alive. Hers die every few days instead of the normal 120 day life expectancy. I've been trying to find others who deal with this condition and it was a relief to see your posting. Do you also need monthly blood transfusions?

    Relieved to meet you,

    sara

     
    Old 11-08-2005, 11:02 PM   #18
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    Re: Hemolytic Anemia

    No but thats sort of the next option if this medication doesn't work. I can't really get blood transfusions because it just makes my AIHA go to work destroying all the red blood cells they just gave me so instead the next step is monthly intragam transfusions. Intragam puts a coating on your red blood cells so as they can't destroy themselves. I'm down to 20mg of steroid a day now and 175mg of cyclosplorin and 50mg of anzathiaprine. They are going to change the anzathiaprine to cellcept because I can't tolerate high doses of anzathiaprine due to rashes etc. My bloods were stable on these meds for a few months 120 haemoglobin but it dipped last week to 109 am scared I'm going to relapse but going to try and keep positive.

     
    Old 11-13-2005, 01:44 PM   #19
    Jekke
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    Re: Hemolytic Anemia

    maaike,

    i was so glad to see your post! I also have Pyruvate Kinase deficiency! So does my little baby, Julia. I found out I was positive after giving birth to her. I have a very mild form but hers is extreme and she recieves monthly blood transfusions. Are you also transfusion dependant? How long have you knownthat you have this disease? I have so many questions. Please write me back if you get this, I haven't met anyone else with this same deficiency.

    Anxiously awaiting your reply

    Sara

     
    Old 11-13-2005, 08:09 PM   #20
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    Re: Hemolytic Anemia

    I don't have PK deficiency I have Auto Immune Haemolytic Anaemia and I have said in a previous post about my transfusion dilemna. I am really scared about going on the cellcept as it is known to increase the chance of lymphoma. Changing meds this wednesday.

     
    Old 12-22-2005, 09:30 PM   #21
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    Re: Hemolytic Anemia

    I sure hope I can remember how to get back to this site... computers aren't my thing. It's been years since I looked up hemolytic anemia, and just thought I'd try again to see what's up with it. Then I found this site. I,also, am looking for answers to a very frustrating disease. What I learned from what some of you have said is that this is a rather rare disease. Didn't know that. Leave it to me to find a "rare" one. But as far as some of your comments saying you've just been diagnosed, I found out I had it about 8 years ago. I thought I had hepatitis. I was exhausted, my urine turned brown, and I turned yellow. I was on a trip and when I got home, I went to the doctors. I was immediately thrown in the hospital for iv prednisone starting at 120. My cbc was 6.6. From that point on, I've kept records of every blood test and know all of my cbc's and retics. It took 6 months for them to wean me off of prednisone. That lasted about 6 months and it came back. I went through this 3 times within 3 years. I've come to recognize when my blood goes "bad" by the pulse in my ear that drives me nuts. Then I was clean for 5 years. It came back this spring after I became very ill with the flu or some other virus. My Dr. always starts me out at 80 prednisone and it takes about 4-6 months to wean me off. But it's back again. This time my cbc is staying close to 14, which is good, but the retic won't behave. It's 4.2 right now. He also has mentioned a spleenectomy as the only other answer besides prednisone.... except this time. Now he's throwing in the option of an iv drug called rituxan. That's why I'm back on the internet. I don't like any of the options. Prednisone doesn't react badly with me, other than the weight gain...and instead of turning hairy, my hair falls out. How lovely to be a short, heavy bald woman! I'm thinking it's time to ask my doc if he knows of any doctor that specializes in this disease. Do any of you know of one??

     
    Old 12-23-2005, 12:22 PM   #22
    Jekke
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    Re: Hemolytic Anemia

    joannie,
    Hello. what is the name of your rare disease? Is it Pyruvate Kinase deficiency? My little girl has it and haemolytic anaemia is a result of this rare enzyme deficiency. She has been transfused 18 times so far is just under 2 years of age. I am looking for others who have this rare blood disease. Are you transfusion dependant also?
    Looking forward to hearing from you again,
    jekke

     
    Old 12-23-2005, 11:24 PM   #23
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    Re: Hemolytic Anemia

    Jonanie, I have in the past and am still being treated with prednisone and have had a splenectomy. Tried Rituxan too....kept relapsing but had one good stint of a few years without meds. (read my previous Posts i.e. search for Jae or JBee) I have just gotten home from Brisbane hospital again for the second time this year but this time they took out my gall had 50 gall stones caused from the haemolysis and now am being treated with Cellcept because cyclosplorin caused me to have seizures and created a mass in the central nervous system part of my brain.

    Would love to chat....The Doctors at the Royal Brisbane Hospital are amazing and treat a few of us with this rare disease...my doctor is trying to find what kicks in my haemolysis instead of just giving me steroids he is trying to get me off them and is weaning me down gradually yet again.

    Love to chat
    Jae.

     
    Old 01-28-2006, 10:25 AM   #24
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    Re: Hemolytic Anemia

    Obviously I'm not very good on finding my way to comments yet. I've checked one area on this site and my letter was the last. so this time I looked up anemia and found a couple of responses to my letter in December. I must thank everyone that has written in what they've learned about idiopathic hemolytic anemia, because I've learned lots and just came back from an appt with my doctor last night. I went armed with tons of questions. I first discovered I had this disease 8-9 years ago. My red blood cell count was 6.6 so they put me in the hospital with iv prenisone starting at 120mg. Within a day I felt great. From there, I had three bouts in three years and every time it was treated with prednisone that took about 6 months to wean me off of. Then I had a quiet period of 5 years and was shocked to have it reoccur just about a year ago. This is my second time since then and I've been on prednisone about 3 months now. So...this is what I learned from my questions last night. No, it isn't neccessarily something you're born with. It can just develop. It doesn't lead into or turn into cancer. It's something that I will always have now, but it can go dormant and not cause anymore problems (wouldn't that be nice). I am coombs direct, and I have the warm version (which he says is more respondent to treatment than the cold version)There are many treatments out there, some older school and rituxan is newer and upcoming for many blood disorders (but may not be covered by all insurances because of it's cost and life span) Removing a spleen works better with warm versions but he still doesn't want to remove my spleen yet (even though this is my 5th bout) because I respond well to prednisone. Currently, instead of hitting me with the normal high dose of 60 mg he starts with, we started with 20 every other day, it didn't correct my count, so we went to 20 a day, and are now on 30 every other day. Personally, I have no adverse side affects to it other than a bit of weight gain and tons of energy! So...other than that...I have no idea where it came from. I also got childhood arthritis when I was in the 8th grade, so when I told him that, he said I apparently have a weaker immune system...maybe my genetics are just predisposed for this. Can't say anything I've just written will help anyone, but again, I thank all of you for your comments because it sure helped me. I just figured I had screwy blood and was shocked to find that I really had a REAL DISEASE. (my doctor laughed and asked if I thought he was lying to me 8 years ago!)
    good luck to everyone
    Jonanie

     
    Old 01-28-2006, 04:21 PM   #25
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    Re: Hemolytic Anemia

    Hi Jonanie.
    So great to hear from you and that you're doing well with this latest treatment. If your coomb's direct test is positive then you're positive for the antibodies that caused the problem in the first place. The blood test for IgG, IgM apparently quantifies the amount of red blood cells that are covered with antibodies. You may want to inquire about this.
    Is your anemia idiopathic, meaning no underlying cause? I find that the most frustrating. I'm told that removing your spleen only works 50% of the time. Suggest you look at the blood disorders thread (select "Message Boards" from the tabs at the top). In blood disorders you'll find a topic titled "how long hemolytic anemia....". Lots and lots of really great info there.
    I sure hope this is your last relapse at least for a very very very long time.

    Les

     
    Old 01-29-2006, 10:18 AM   #26
    Jonanie
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    Re: Hemolytic Anemia

    Hi Les and Jae,
    How nice to hear from you. Isn't it interesting how well versed we are all becoming about a medical issue that we would never even have dreamed of! Yes, my enemia is idiopathic. Years ago when I asked my doctor if that just meant my blood was too stupid to know what to do, he said...no, they were just too stupid to know what causes it. That's why I always referred to my blood as being stupid when trying to explain this to my friends. As long as I was grateful to not have cancer, I didn't want to sound like I was looking for attention from my friends. That's why I never really looked at this as serious. Personally, I'm still going to look at it this way...I'm just going to look at it like an inconvenience... But I must say Jae, when I hear that you have had a spleenectomy and rituxan...it NO LONGER qualifies as an inconvenience. I'm very sorry for you and everyone else that is experiencing such difficulties. That's when I realized this is serious. I am in agreement with my doctor that if my body will respond to prednisone, I'll continue this route and save rituxan and a spleenectomy as options down the road. Hopefully it doesn't need to be addressed. But since I've been taking prednisone, I am very faithful to the herbs I take. Calcium for the bone damage prednisone causes, chlorophyll for my blood, and on and on. Maybe that's why I feel fine during all of this. That...and I count my lucky stars that I've been sent a disease that hasn't dibilatated me. I wish that for everyone. I'll continue to read the emails from this site and see how everyone is doing...it's nice to have a little troup out there. (my doctor says he treats about 5 of us where I live...a town of close to 100,000)
    take care Jonanie

     
    Old 02-25-2006, 03:29 AM   #27
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    Re: Hemolytic Anemia

    Been on cellcept for a few months now and am having less side effects than the cyclosplorin. Both medications are extremely pricey and my doctor had to get specialist funding from the government again as he did with rituxan. For the first time in three years my RTic count is in the normal range and my haemoglobin is 100. Still on the prednisone 15mg per day dose though and am stable for once. He is going to keep me on the same meds for 3 months and then start to wean me down off them. Will let you know how things go.

     
    Old 02-25-2006, 07:46 AM   #28
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    Re: Hemolytic Anemia

    Always love to hear good news. I hope you're able to get off the prednisone entirely. I'm actually afraid to go back on it. Just had my one year blood test. They actually took 7 vials of blood See my hemo doc in a week and am hoping I'll be told nothing but good news!

    Stay well.

    Les

     
    Old 04-06-2006, 09:36 PM   #29
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    Re: Hemolytic Anemia

    Hi guys, Been back at work for the first time since June/July last year. Been doing a bit of relief teaching with different schools, things are definitely looking up since the gall bladder operation and cellcept meds. Go back to the doc on wednesday and start dropping the prednisone hopefully it might just go away again for years and years. With any luck.

    Keep in touch
    Jae

     
    Old 05-07-2006, 06:25 AM   #30
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    Re: Hemolytic Anemia

    GREAT NEWS!!!! Haemolglobin 133 never had hg so high since my very first blood test nearly 9 years ago. Prednisone is now 12.5g but still on heaps of cellcept. I love this medication

     
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