platelet refractory
 

Has anyone had experience with having their platelets drop after transfusions? I am having difficulty with receiving platelets effectively and I don't know of any "treatment" for this other than to get a good match. The blood bank at my hospital knows my name (for sure)and they try to find me a good match-The platelets are also irradiated and leukocyte reduced. Has anyone successfully dealt with this?

Getting irradiated, leukocyte reduced platelets is the right approach. HLA-matching and donor-recipient cross-matching give you the best chance of an effective platelet transfusion.

I would ask the center where you receive platelets if they not only try to find you a good match but if they focus on single donor apheresis, meaning that they ask a specific donor to provide platelets when he or she has been a good match for you previously.

My sister is a platelet donor and there is a particular patient for whom she is called to donate when necessary. It's still anonymous; she doesn't know the patient and the patient doesn't know her, but the center knows it's a good match and tries to pair them whenever possible.

platelet refractory
 

Dear M Mindas
My platelet count dropped the last time platelets were transfused. Even the units that were special matched were not effective. The docor said that my body was destroying them. I also often have bad reactions (chills followed by high fever) to platelet tranfusions. Have you had any of these?
I have had no reactions however, if the platelets are infused between units of packed red cell transfusions. But I don't know if they were more effective in raising my platelet count or not. This is an interesting subject since my count is always under ten - sometimes falling as low as three. I would appreciate sharing any new info found by either of us.

Wow. Three? That beats my 5 when I was in the hospital for the ATG tx. I have read up about it and sometimes what they may do is create a "cocktail" with different donors platelets to increase the chances of a good outcome. I don't know if anyone else has experienced these issues. Seems like other patients get their transfusions and go. I am stuck for 15 hours waiting for my "match". I will wait even longer if it takes-- as it is very disheartening to see my numbers go down after a transfusion. I hope you are doing better.

I was in the hospital and had a delayed bad reaction to the platelets ordered for me. I had finished the bag of platelets and about 10 minutes went by and then I started to shake with chills, my blood pressure went up as did my temperature. The nurses were able to give me a steroid injection and demerol which helped. It is a scary thing to develop a reaction like that. The blood bank responded that the platelets were due to expire on the day that I was receiving them and that next time I may do better with a "younger" bag of platelets. Has anyone heard of such a thing?

Soliris and improved platelet transfusions
 

Hello! I wanted to point out an observation that I have found since starting my Soliris medication for my PNH on May 18th 2010. Prior to my Soliris,I was having a very difficult time accepting platelets. My counts would hardly go up- if they did at all. Since I have started my Soliris, it has not only helped with my hemoglobin counts and my fatigue--It has helped with my platelets! I am still transfusion dependent, but now I can get my counts up to 70 or 80 with one bag! That means less transfusions overall. I have had 6 weeks of good platelet transfusions. I know this is not anything that is advertised with Soliris, but it is a great side effect for me. My doctors have said that it is possible because of there being less hemolysis of the red blood cells (?). When I jokingly asked about a clinical trial for the platelet and Soliris connection, the response was that Soliris is soo expensive already and platelet refraction was not that important for a clinical trial. All I know is that while I was bleeding in the hospital from several orifices and a platelet count of 5 after two bags --I would have appreciated another option. I got lucky and finally got a bag to bump me up to 50, but there were some dark days and I am grateful to have stumbled upon this. I hope someone will check this out as I think it will help those of us who are alloimmunized. Has anyone else experienced this??