I am a 30 year old female who up until 5 months ago, had never been sick with anything other than a cold! I had a few days of flu like symtoms and a high fever and after 10 days of feeling rather ropey, I went to the doctor who ran some blood tests. Haemaglobin (H)6. Since then have seen fantastic haematologist in London who put me on Prednisolone (P). Ran loads of tests to see if I had anything nasty that could have caused this 'haemolytic anaemia'. Nothing showed up. However, I was still getting extraordinarily high and somewhat aggressive fevers which was apparently unusual. Was admitted to infectious diseases unit of the hospital in case I had Malaria etc.. Nothing. Tested for Lymphoma - bone marrow biopsy, scans, more blood tests - nothing. As a result I have Idopathic AIHA. P reduced over time from 40mg to now 5mg per day. (H) rose to 11.2 but recently dropped again to 9.8 and they have now put me on something called Mycophenolate or Cellcept. If this fails, they are talking about a Splenectomy - not too keen! My questions are a) Does anyone have Idiopathic AIHA with these fevers? b) Anyone else been on Mycophenolate? and c) I feel OK some days - is this normal and if this is bareable should I avoid Splenectomy? I would so like to hear from anybody with AIHA and your experiences. Thanks Fish xx

Hi:

I'm familiar with prednisolone and CellCept [MMF] but not with AIHA. BTW, idiopathic means 'of no known cause'.

Both prednisolone and CellCept are immune-suppressants which means that these meds work by suppressing the bone marrow from producing blood components [red blood cells, white blood cells and platelets]. Because of this, your body is actually less able to fight off infections since white blood cells are the body's defense against most infections.

Here are links for more information about both meds and AIHA.

Prednisolone: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202018.html

CellCept: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/203436.html

AIHA: http://www.nlm.nih.gov/medlineplus/ency/article/000579.htm

Also suggest you read an article titled Hemolytic Anemia and authored by Paul Schick, MD, Professor, Department of Internal Medicine, Thomas Jefferson University Medical College]. From there, you can access many other technical articles on related anemias. This article discusses specific enzymes and other compounds whose deficiency can result in various anemias as well as some pathogenic causes e.g. parvovirus. [I mention this because you sound as though you want to eliminate all possible suspects before undergoing surgery.]

Good luck,
Jay

hey greenfish-

I too have idiopathic auto immune hemalytic anemia. I was on predisone at one point in time, but eventually stopped it because I did not like the side affects and now I am on plaquneil. When need be, I go in for IVIG's. Those are fun, and they give me metholpredisone too. In the begining the doc's were considering a splenectomy, but it would actually have just caused more problems for me then helping with the anemia. I have lived with the AIHA for almost 4 years now. it is really cool to finally meet someone else who has AIHA...

Thank you to both of you. Jay, I looked up that article and is was extremely interesting - I really appreciate that. I understand that it is unusual to be put on CellCept for AIHA, but they are avoiding putting me on other more common immuno-suppressent drugs due to the side effects they 'may' cause during pregnancy. I was planning on having a family at this stage in my life (recently married) but under instruction from the docs that this is to be avoided until I am 'better'. The other more common drugs could have some more long-term damaging effects to a foetus and that's why they haven't put me on them. On Friday I will have been on CellCept for 5 weeks and to be honest, if there is little to no improvement, I would like to be taken off it. I can't see the point in being pumped full of more chemicals if they ain't working! I am also going to see a homeopath - to attack this bloody thing (no pun intended) from all directions.

Radioflyer - so sorry to hear that you still have this after 4 years! Why won't it go away? Do you get fevers too?

Thanks again. Any more advice or thoughts would be most welcome. Fish xx

Thank you to both of you. Jay, I looked up that article and is was extremely interesting - I really appreciate that. I understand that it is unusual to be put on CellCept for AIHA, but they are avoiding putting me on other more common immuno-suppressent drugs due to the side effects they 'may' cause during pregnancy. I was planning on having a family at this stage in my life (recently married) but under instruction from the docs that this is to be avoided until I am 'better'. The other more common drugs could have some more long-term damaging effects to a foetus and that's why they haven't put me on them. On Friday I will have been on CellCept for 5 weeks and to be honest, if there is little to no improvement, I would like to be taken off it. I can't see the point in being pumped full of more chemicals if they ain't working! I am also going to see a homeopath - to attack this bloody thing (no pun intended) from all directions.

greenfish-
for a while when i was first diagnosed i did get bad fevers and flu like symptoms...it got missed diagnosed in the begining until they decided to do the blood tests...supposedly this last hospital visit i had a slight fever all the time...but they just gave me tylenol or something to bring it down...they are not sure why i get the fevers though...but they are also not sure if i will ever get rid of my AIHA...i might grow out of it...but then there is a chance i might not...my hemoglban has only averaged about 9.5...never getting higher than 11.0...what have your numbers been averaging? and with the fever do you seem to be flu like too? gots to go for now...
radioflyer

Hi Radioflyer - my average haemoglobin is probably the same as yours - around 9.5. Highest it got to was 11.3. Fevers were very high and frequent to begin with - about 102degrees. This is apparently very unusualy although not totally unheard of, which is why I was tested for tropical diseases. They have put fevers down to haemolysis (destruction of blood cells). Still get the fevers on average every 5 days but they are not as aggressive now.

How old are you (if you don't mind me asking)? Are you male/female? Have they talked about a splenoctomy? How does AIHA affect you day-to-day? Sorry so many questions, but I haven't spoken to anyone else with this dissorder. Thanks for your time. Fish xx

Hey greenfish- it is cool with all the questions. When i was first diagnosed i was curious about it too. Well i am a 19 yr female. A slpenectomy has not been discussed at all lately. It is just seen to be too risky with how low i can get sometimes. My lowest i have been is 3.1. The docs were surprised that i could walk, talk and go about daily things with only slight fatigue, but major headaches. Headaches are my main sign of when my numbers are low. You need to figure out signs of what happens when your numbers are low cause that really could save your life. Also listen to if people tell you you look bad. I ignored that once and it almost cost me. But day to day, I have my ups and downs and I am getting ready to start college here in a few weeks. It is hard because I know i am going to tire out faster than the other kids but i can push myself. Down days normally happen around sunday when i can catch up on sleep. But they can just jump in in the middle of the week. Up days are the best. I love it when i feel no symptoms of what is going on. i hopw that answered a bit. But if you are talking day to day like doctors appts. That really kills things. I have to make appts around everything and it can mess with me working or just hanging out with people, but health before work.any other ?'s feel free to ask.

To Greenfish and also to Radio Flyer 02,
I had Hemalytic Anemia for about three years but am completely well. I still am monitored every six months to make sure my darling little warm antibody is still gone and so far it is. I feel great! When I got sick, everything I read didn't give me much hope for getting well. I have a wonderful doctor - Michael Savin, MD, Dallas, TX and with his help, we have licked it up until now anyway. I used to donate blood all the time but finally, the blood bank wrote me a letter telling me I had the warm antibody in my blood. I felt fine but sent my family dr. a copy of the letter and he stuck it away in my file. I was fine. A couple of years later, I was exhausted, would huff and puff going from the den to the kitchen. I finally saw the dr., had blood work done - I was very, very anemic. We put two and two together, got me an appointment with Dr. Savin and I did everything he told me. Prednisone and Imuran were what we used. Dosages were high initially with the Prednisone but we got them down to small dosages over time. Finally when my Red count was normal, I was able to get of the Prednisone but Savin wanted me to make sure I stayed on the Imuran. I felt so good, about a year ago I asked him to test for the antibody and it didn't show on the test but he said come back in six months, we'll test again and then we'll see about getting off the Imuran. It was still gone, he decided we'd better stay on it six more months. I am now off of that drug and thank God every day for wonderful drugs and wonderful doctors. My message to anyone out there with this is - don't give up hope. You can get well. I didn't think I could but I did. Since I have gotten well, Dr. Savin told me he has two more patients with the same disease. One isn't sick yet - he just has the antibody. If anyone out there has any questions about my treatment, please feel free. I was hesitant initially to take an immune suppresant but lots of hand washing kept me well and I noticed I didn't get as many bugs as my coworkers.

Hi! My husband is having his second bout with Hemolytic anemia. His is a complication of a blood cancer called Waldenstroms. His Dr. is Dr. Robert Kirby who has suggested he get a second look by someone else. Where is Dr. Savin at here in Dallas? Thanks! Mary Tanner

I think of myself as a positive person, so I hate to sound like a bummer. I found out I had idiopathic hemolytic anemia about 8 yrs ago...had 3 bouts of it over 3 years with prednisone as the only drug to level out the blood differences. Then I was clear for 5 years, with my doctor keeping check on my blood every 3 months. Last year I got very sick with some kind of flu going around and my blood went nuts. We cleared it with prednisone, and then last fall it came back again. I've been on prednisone since November but am now on 2 1/2 every other day. My high is averaging 14-15 but the retic has just dropped to below 2 and it should be around one. My doctor wants me to stay on prednisone for another couple of months, just to be safe. As much as I don't like the long term effects it can have on a body, I agree with him. I have come to have a bit of fear that this can come back as it wants...but I also have it my goal to never have it come back again. (I was 41 when I got it)

Hi Greenfish,
I too have been diagnosed with IAIHA and am being treated by a wonderful doctor in London. He has mentioned taking my spleen out but not until he has started me on some prednisone. Because our condition is idiopathic I think it is not so easy to treat.
I am trying to establish what may trigger this condition and wonder if I could ask you whether you had any illness or stress before this was diagnosed? I had glandular fever just before they diagnosed me.
I have a daughter with Rhumatoid Arthritis which is also an autoimmune disease which we feel was bought on by stress.
Many thanks
BB

Hi WannaQuilt-

I am very interested in hearing how you are doing. I am a 45 year old female, diagnosed with Idiopathic autoimmune hemolytic anemia in August 2006, had to be hospitalized and get a few transfusions, then went into complete remission (via pred) until a few weeks ago, now back up to an 80 mg dose. I live in Austin and my doctor is talking splenectomy, which I would love to avoid. May I ask how old you are and what your side effects were on Imuran? I am so worried about this-I have 3 sons, the youngest of whom is barely 4 years old and I want to be around to dance at his wedding! Your Dr Savin sounds like a great guy-I have a good hemotologist here in Austin, but I think I need to get a second opinion on this-this is all so weird-I was perfectly healthy 6 months ago!

Sparkle,
I have AIHA - I was diagnosed last May after what they thought was a bad kidney infection (It wasn't - it was the AIHA - I was jaundiced and tea colored urine with a fever).

I also have ITP (Immune Thrombocytopenia Purpurs), which is like AIHA, only involving the platelets.

I had my spleen out in 1995 for my ITP. It put me in remission until 2003, then I was taking occasional Prednisone to get me back into remission.

But then last May, I developed AIHA. I know that splenectomy is a treatment, but honestly, I would make that my last option. There are treatments you can do like Rituxan, which is a drug used for Lupus and Lymphoma that target the T-cells and has been known to be very successful in AIHA, but it suppresses your immune system. With my spleen gone, I am immune suppressed already, so I am nervous to try Rituxan, but I would if my counts didn't respond to Prednisone.

Bottom line, think long and hard about removing your spleen. There are people who post in the blood disorders thread who have had their spleen removed and it didn't help their AIHA - they still relapsed. The drs tend you give you better odds because the odds don't fact in patients long term. They might get a remission for a year, but then relapse, then, because the surgeons don't follow them, they are considered a success, but in reality, the treatment failed them.

If you have any other questions, I've had unfortunately, alot of experience in this area. Let me know if I can help.
Best,
Jill

Dear Jill-

Thank you so much for your post. Believe me, I am not going to give up my spleen without a fight. I am exploring the other treatment options, including Imuran, Cytoxen and Rituxin. JUst very nervous about the long term side effects and the impact that it will have on my family if I have to go through that process.

None of this is easy to deal with -can I ask how old you were when this all started for you? I just wish more was known about the treatment AIHA. I wish you nothing but luck in your own treatment. Take good care of yourself. and I look forward to hearing back from you.

MAry

Mary,
I was 24 when I was dx-ed with my first autoimmune disorder, ITP, and then 38 with AIHA. We had just bought a new mattress that smelled like chemicals, and then all of a sudden, I started getting sick. My dr said that sometimes a reaction to a chemical or something can trigger the an episiode of an autoimmune disorder. In looking back at my bloodwork, I probably had AIHA since I was 32, but noone paid attention because they were looking at my platelets back then.

I've never taken Rituxan, but I know a lot of people who've had great success with it, and not too many side effects. It seems like if it works, it's a total success or it doesn't work at all. It's like there's no in between.

Keep me posted on what happens next!
Jill

Jill-


That actually makes a lot of sense to me-your reaction to the mattress, being a possible trigger. I have had severe allergies since childhood, to cats, dust, pollen and sometimes chemical reactions to household cleansers, etc. But, I would never have said that my allergies effected my life quality, especially since Advair and Singulair have been around. I never have to use a rescue inhaler for asthma anymore. I mentioned in an earlier post that I had Whooping COugh in October 2005, and I think that was my trigger, even though I did not have symptoms until 8 months later in August of 2006-but who knows. MY son had whooping cough too though, and also has health issues (including asthma and severe acid reflux) that he did not have prior-he was 10 when he got it. The vaccine you get as an infant only lasts about 8 years.

Your feedback has given me the courage to talk to my doctor more about Rituxin. I am also getting a second opinion later this month. I will absolutlely let you know how what happens next. I also hope for you that your AIHA is not having too negative an impact on your day to day life. I must say that when I feel the symptoms I am completely wiped out. Chasing my 4 year old and trying to work exhausts me!

Talk to you soon !

MAry

My daughter was diagnosed with IAHA when she was 17. One day she was a very well young lady and within a week her haemoglobin was down to 3.5. She was in intensive care for 3 days. She just couldn't stay stable under about 25mg Prednisone daily and specialist wanted her off it (as we all did - was nasty nasty nasty to her poor body).

She had her spleen out. That didn't work either.

She then had some 'experimental' treatment that was being trialled in USA (we're in Australia). MabThera. Used for non-hodgkins lymphoma. Administered intraveniously(sp?) once a week for 4 weeks. (cost about $15000 but health insurance and hospital and manufacturer - Roche - came to the party and 'sponsored' her treatment. Lucky us hey.

That worked. She's been in remission for about a year (took about 3 months after the treatment to see a result). Her haemaglobin was within the normal range for the first time in 2 years recently :) Her red blood cells are still being marked as foreign, but the rate at which she's burning them is matching the rate at which she's producing them. Here's hoping there'll be no relapse, but nothing is certain.

I regret that she had her spleen removed, but I don't think they would have even considered offering the MabThera without first trying the traditional treatments.

Good luck and I wish you all the best with it.

Mabthera is called Rituxan here. Wonder why they have two names?

I'm so glad to hear it worked for your daughter. Here, if you get the right dr, they will try it before splenectomy. It just depends on how up the hema is on the latest therapies for autoimmune diseases like AIHA.

Mary - I'm glad you're already planning to get a second opinion. It's like wottha said if your rate of blood cell destruction (hemolysis) keeps up with the rate of production, it doesn't show up on blood tests. It's only when it dips below that dr start investigating, and even then, they usually don't think of AIHA until everything else is ruled out. But they should. There's a simple test they can do, a blood test: A Coomb's antibody test. It will tell them if it's AIHA with a few other things.

Right now, my hemoglobin is at 12.2, I had IVIG in November. Hopefully I won't have another problem, but my hemoglobin never goes above 12. I have a hematologist appt tomorrow, so we'll see what they are now.

Take care,
Jill

Wottha- I am glad to hear that your daughter is doing better. I really hope she continues to feel well. You and she are in my thoughts.


Jill-I do know for sure that I have AIHA-when I was hospitalized in August and about 3 weeks ago I tested Coomb's positive. I think my pred is finally working -in the last 48 hours I have begun to feel almost normal again-hope it lasts.

My main reason for seeking the second opinion is that my hematologist has not treated a lot of women with AIHA, so I want someone to look at me that has more possible insight to the issues related to AIHA that are women specific. I seem to be having a hard time with my periods now as well-heavy flow, etc, and more discomfort. I have never had issues with that in the past and had 3 normal pregnancies, no gyn issues, etc. I hope your appt went well-take care!


MAry

Mary, I read your last post with interest. I'm in remission from AIHA (1 1/2 years now) but remain Coomb's positive with hemoglobin hovering around 12. About 5 months ago I was scheduled for a hysterectomy but when my hemo doc heard about it he made me cancel. He told me that all major surgeries are considered possible triggers. So now I'm scheduled for a laparoscopy for endometriosis. This is minor surgery I'm told. I've moved to a new city and have all new specialists. I don't see my new hemo doc until 2 days before the procedure is scheduled. I'm starting to wonder if I need to worry 'cause I'd rather endure the pain I'm having than trigger a relapse. The pain in my lower back and ovaries interestingly enough started about the same time I was diagnosed with the hemolytic anemia.

Les

Les44

I would certainly say it is better to do the laproscopic option for the endometriosis if you can. I can understand your concern about doing either, especially after having been in a long remission, but if you are in terrible discomfort it may well be worth the risk. I have not had IAHA long enough to know how it effects the reproductive system long term, but I do seem to have more discomfort associated with my period, etc , than I ever have before. I had 3 normal pregnancies and have never had any OB/GYN issues prior to this. I know that when I was initially diagnosed, in full hemolytic crisis, I just did not have a period-I guess my body knew that bleeding would send me over the edge.....hopefully your new hematologist will be able to give you some good advice. Is he/she experienced in treating IAHA? Good luck-please let me know how everything goes for you!

MAry

Les,
I sympathize with you. I recently developed high blood pressure, so I had to go off birth control. My first thought was that I needed to get my tubes tied, but my dr said that (basically elective) surgery was too risky -and I don't want to risk my AIHA coming back.

The trouble is that it sounds like you really need the surgery. There's a point where the need for surgery will outweigh the possibility of a relapse - do you think you've reached it?

I too hover at 12 on my hemoglobin. It's so strange to me that nothing they can do will get me over 12, not even high doses of Pred (60mg).

What did your dr say?
Take care,
Jill

Jill and Mary,
thanks so much for your posts. It's nice to hear from someone else that's experienced increased gyno problems since being diagnosed with the AIHA. I'm meeting with my new hemo doc 2 days before the laparoscopy. If he "freaks out" like my last specialist I guess I'll cancel. I've been told that as long as the surgeon doesn't go near the spleen the risk is minimal. Surgery's scheduled for the day before Good Friday. I'm scheduled to travel a week later (for work) so I'm staying completely positive here, and hoping I can dump all the pills for a change!
Les