new to the forum..have several questions

[majolica]

Hello,

I just joined this site and have several complicated medical questions. I will start with a brief history....Four years ago I was diagnosed with (AVWS) Acquired von willebrand syndrome and monoclonal gammopathy (pre-cancerous condition for Multiple Myeloma and a few other blood cancers. I had to have hysterectomy, so I had to receive 7 days of IVIG (immunoglobulins) with steriods to get my blood to clot enough to get through the surgery. They also pre-treated me with IV benadryl. I became very ill, but I guess fooled everyone because of the steriods and I did not know any better. The hematologist who was treating me had never met me before this. I have not been back to a hematologist since. According to my blood tests.. my RBC where getting detroyed and I was getting anemic and going into renal failure. (I still bleed in the surgery) My labs stated that a tested positive for a antibody. (had a transfusion in 2001 for a un-diagnosed internal bleeding) My questions are...Do I still have the antibody? Was the reaction from a virus, steriods, IVIG? Here is what my labs stated.....I will start will the CBC..High WBC..low RBC, low HGB, low HCT. Also it said present in my blood smear...macrocytosis, microcytosis, ovalocyte, toxic granulation. On another page it also said moderate hemolyzed specimen. I was not treated for the complications. Was the antibody temporary? Will I ever be able to use IVIG if I ever need any dental or surgeries? Thanks so much for any input! I forgot to mention my labs also said...antibody ID result 1, antigen type res 1, patient types FYA/(DUFFY A) antigen negative.

Edited December 2, 2010 by majolica

[David Saikin]

I cannot answer your medical questions. I am assuming your antibody is anti-Fya. YES, you will have it forever, even if it is undetectable, your lymphocytes will be primed to mass produce this antibody if you are exposed to Fya postive red cells. If/when you go into a hospital, you should make them aware that you have this antibody.

[majolica]

Hello David,

Thanks for taking the time to respond. But, I am not sure if I understand . My labs states...antibody ID result 1, antigen type res 1, anti FYA (DUFFY A), but then it says patient types FYA (DUFFY A) ANTIGEN NEGATIVE? Our you sure I have this antibody? Wouldn't it be just tempory if it was form a virus in the IVIG? Why didn't the hemo doctor tell me that I had an antibody? Heck, they did not even tell me i was so darn sick. So, that is why I found this great site to help me sort these important questions out.

Thnaks again..

[Malcolm Needs ☆]

I'm not sure what your laboratory means by either "anibody ID result 1" or "antigen type res 1", but anti-Fya is qute clear, as is Fy(a-).

You lack the Fy(a) antigen, which means that you could have made anti-Fya when transfused with Fy(a+) blood.

When you were next transfused (when you had the reaction), it sounds to me, from what you write, very likey that you were again transfused with Fy(a+) blood, and that you underwent a haemolytic tranfusion reaction.

This would have had nothing to do with your other medication and, as David said, you wll always have this anti-Fya, whether it can be detected serologically or not.

[majolica]

Hello Malcom,

Hope I did not post this twice...So did I get the antibody from my 2001 blood transfusion? I did not have a blood transfusion for the 2006 surgery, just Immunoglobulins. I know IVIG is pooled form 1000's of donors which can contain viruses. My blood smear stated toxic granulation...so I must of had some kind virus also. I know the hemolysis anemia went along with the other blood smear abnormancies. So, what exactly does the anti-FYA mean to someone with a bleeding condition? Does it have any effect on my pre-canerous condition. Does this mean if I ever need blood again this could complicate things? Sorry for all the questions....Its been a very lonely road these past 4 years and I have not had anyone in my corner.

Thanks

[Malcolm Needs ☆]

Hello Malcom,

Hope I did not post this twice...So did I get the antibody from my 2001 blood transfusion? I did not have a blood transfusion for the 2006 surgery, just Immunoglobulins. I know IVIG is pooled form 1000's of donors which can contain viruses. My blood smear stated toxic granulation...so I must of had some kind virus also. I know the hemolysis anemia went along with the other blood smear abnormancies. So, what exactly does the anti-FYA mean to someone with a bleeding condition? Does it have any effect on my pre-canerous condition. Does this mean if I ever need blood again this could complicate things? Sorry for all the questions....Its been a very lonely road these past 4 years and I have not had anyone in my corner.

Thanks

Ah, so sorry majolica, I misunderstood. I thought that you had another transfusion in 2006. In that case you could have undergone a drug-induced autoimmune haemolytic anaemia, but this is very rare.

I still doubt if it had anything to do with the IVIG - a drug that is very much a "good guy"!!!!!!!!!!

Anti-Fya means nothing concerning your bleeding condition or your pre-cancerous condition, and shouldn't cause any real problems with future transfusions, as Fy(a-) blood is readily available, except in the Far East.

:cuddle::cuddle:

[jayinsat]

Hello Malcom,

Hope I did not post this twice...So did I get the antibody from my 2001 blood transfusion? I did not have a blood transfusion for the 2006 surgery, just Immunoglobulins. I know IVIG is pooled form 1000's of donors which can contain viruses. My blood smear stated toxic granulation...so I must of had some kind virus also. I know the hemolysis anemia went along with the other blood smear abnormancies. So, what exactly does the anti-FYA mean to someone with a bleeding condition? Does it have any effect on my pre-canerous condition. Does this mean if I ever need blood again this could complicate things? Sorry for all the questions....Its been a very lonely road these past 4 years and I have not had anyone in my corner.

Thanks

Hi,

I'll explain this the way I explain it to my students. Having the FyA antibody (anti-Fya) means that, at some time in the past you were exposed to the FyA antigen. Antigens are proteins that sit on the surface of your red blood cells. Everyone has them and everyones combination of proteins (antigens) are unique. Since you don't have the FyA antigen (you are negative for FyA), if you are exposed to the FyA antigen, your body will see it as foreign and produce antibodies against it. Hence, why you have anti-FyA. This is a defense mechanism, which is what gives us immunity to viruses, bacteria, etc. It is not and abnormal thing, we just have to be sure any blood you receive in the future is negative for the FyA antigen.

hope that helped.

James

[LaraT23]

Also to note toxic granulation does not necessarily point directly to viral infection. IVIG that we give today has been tested for all manner of virus, those we can test for and definitely the biggies so I wouldn't worry about that. As far as transfusion, you should definitely alert any other healthcare provider that you have that antibody. We make up cards for those patients who would like them, with our hospital contact information and the name of the antibody that we detected.

So really, apart from being resistant to malarial infection, not having the duffy antigen is not a problem for you. Having the antibody will only be a problem if you are ever transfused again.

So sorry to hear of your health issues, and hope we have given you some useful answers.

[Liz]

Makcolm, just a word of precaution, IVIg may have traces of IgA and cause an anaphylactic reaction in pts who are IgA def. This does not look like such a case. I recommend on-site medical advice.

[Malcolm Needs ☆]

You are, of course, correct Liz.

In fact, a few years ago, it also contained quite a lot of anti-A and anti-B (although, I think now, that this problem has been overcome), but I do know of one case of an ABO mis-matched BMT that remained aplastic for a very long time, and this was put down to the ABO antibodies in the IVIG.

[majolica]

Wow Everyone!!!

You all are so wonderful to help me sort all this out. I am so grateful!! I forgot to add another issue that was stated on my labs. It also said on the blood smear atypical lymphocte (s)= reactive, benign, viral lymphocyte (s). When I looked that up it suggests Mono... I am I correct? I have also read mono can cause a temporary antibody? Would my IgG lambda monoclonal gammopathy have anything to do with the reaction from the IVIG? I was a sick as a dog...drove myself in a blizzard everyday for 7 days to the hospital to get the IVIG treatments for the surgery. Get this...if things weren't bad enough the gyno doctor that the hemo doctor recommmened. The gyno only seen me once before I was SUPPOSE to get a hysterectomy. The gyno doctor FORGOT who I was and did not perform the hysterectomy. He only removed the benign tumors on my ovaries. When I woke up....I was not a very happy patient, and made it very clear how mad I was. Maybe that is why no one said anything about the antibodies....Geeze , It wasn't my darn fault! Sorry for long story..but I am very symptomatic...bone pain, night sweats, bruising , fatique, weakness and I have had to deal with this on my own and its been a nighmare. Heck, my factors are so low.. (6% factor VIII norm 60-150) (VWF 22 norm 42-200) (VWF, AG 30 norm 49>)

[Mabel Adams]

The exact reason that the steroids and IVIG were being used would be meaningful. They are often used to treat an autoimmune disease. I suppose that is what they termed the acquired von Willibrand's? It might be possible that there was also some autoimmune hemolytic anemia destroying red cells because different autoimmune processes can go on at the same time. I have rarely heard of red cell antibodies being present in IVIG in high enough levels to be picked up in our testing for antibodies, but since you are Fya negative and are therefore capable of making anti-Fya and you were transfused in the past, it seems reasonable to assume it is a "real" anti-Fya rather than one aquired from the IVIG. I agree with the others 1) that it would be best to get medical advice from someone who knows your entire case and 2) having an antibody against foreign red cells is unrelated to your other health problems. A good website for lab test information is labtestsonline.org. Wikipedia.org is getting better for blood banking information than it used to be. White blood cells can change for many reasons so must be considered in the whole context of the problems going on at the time. Hope things are getting better for you.