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View Full Version : HLA Platelets. Have Some Questions?????


Grifmat
Mon Apr 29, 2013, 01:34 PM
I tried to look for some answers throughout the forum before I started yet another thread. I couldn't find anything that gave me the answers I'm looking for. You have all been so generous and informative, I'm hoping you can all help. My mom has become refractory to regular platelets. She's been holding her own in the 10 - 15 platelet count range while receiving single and random donor platelets. They are starting her on HLA platelets today. Here are my questions:

Do they raise your platelets up higher that the other platelets?
Do they last any longer?
Can she become refractory to them? Could they stop working too?

Now my mom's problem is auto immune and it seems to be attacking her platelets before they leave the bone marrow...but they are being made...they just aren't getting out.

Any info you can give me would be so appreciated. Thank you so much!

Birgitta-A
Mon Apr 29, 2013, 03:08 PM
Hi Grifmat,
As far as I understand HLA matched platelets should increase the platelets count more and last longer than platelets from many donors.

Refractoryness is very complicated. The researchers get get better and better tests for different antibodies and find new the whole time. Hopefully the doctors will find donors with platelets that won't stop working for your mother.
Kind regards
Birgitta-A

Grifmat
Mon Apr 29, 2013, 04:43 PM
Thank you. The way I understood it was you can't become refractory to matched platelets...I guess time will tell.:)

Hopeful
Mon Apr 29, 2013, 08:51 PM
Hi Grifmat,

How frequently is your mom getting tranfusions now, or is she able to hold her platelet count above 10k without transfusions?

Make sure that her platelet orders always specify that they are leukocyte depleted and irradiated. It should also say this on the platelet bag (double check). This is believed to decrease sensitization.

Platelets only live 5-7 days, regardless if they are matched. HLA matched platelets can give her a bigger jump, however it doesn't always happen for everybody. There are other tricks that they can try if this is the case. Hopefully they will work for her, and she can hold her own soon!

Grifmat
Tue Apr 30, 2013, 08:39 PM
Hi Hopeful,

She has been getting about three tx a week...anywhere between 1 and 5 units. She hasn't dropped below 10K in about 2 wks but it's hard to tell if she is staying there on her own or with the tx...eventhough she has become refractory. I don't know...it's so confusing. She had a tx of HLA platelets on Monday and she gets blood work tomorrow morning (Wed). I'm praying that they gave her a decent bump. She is very discouraged and expects the worst right now. If her platelets were up...even a bit...from the matched platelets, it might be just the encouragment she needs to realize she can manage this disease and have a very full life. I'm keeping my fingers crossed and hoping for the best. Thanks for all your help.

marmab
Wed May 1, 2013, 10:25 AM
Hi,

I have always received HLA-matched platelets, as I was refractory from my very first plt tx 20 months ago (my platelet count actually went down with my first transfusion). I have had many, many platelet transfusions since then, and I always get a good bump (40-100 points) per unit, keeping in mind that the volume, age and quality of each unit varies. The platelets are always leucocyte reduced and irradiated, as well. How long they last depends partly on the natural lifespan of the platelets, as Hopeful mentioned, and partly on what is going on in your mother's body in regard to platelet destruction. I hope the HLA-matched platelets work out for your mother. Keep us posted.

Marmab

Birgitta-A
Wed May 1, 2013, 02:47 PM
Hi Grifmat,
Very interesting that your mother will receive Promacta - hopefully she will respond to that drug for low platelets. Promacta is only approved for ITP as far as I know. If they think your mother has ITP they should try Prednisone or a similar drug again and stop the platelet transfusions since they don't help ITP patients.

Try this link for very good info info about ITP I have followed it since my dx 2006 because my dysfunctional platelets has been as low as 22. You have to register.
http://www.pdsa.org/treatments/conventional.html
Kind regards
Birgitta-A

Grifmat
Wed May 1, 2013, 02:56 PM
Hi Marmab....

my mom got the HLA platelets on Monday and she had blood work done today. Her platelet count was 45!!! We were all so happy. She hasn't seen 45 since all this started. The highest she has gotten was 15 but usually she has been between 9 and 11. We know it's just a temporary bump but 45 after two days is very good for my mom.

Birgitta...

My mom hasn't been diagnosed completely yet. She is considered AA but she is only slightly anemic and she is autoimmune but the platelets are being attacked as they are made in the bone marrow. Promacta has been approved for AA in the US. I have know a few people who have had a lot of success with it. They tried prednisone on my mom and she didn't have any response at all. This is her first tx of 'matched' platelets and it was successful. We are keeping our fingers crossed that this continues

Thank you all for your kind words and wisdom....I appreciate it very much.

Birgitta-A
Wed May 1, 2013, 03:02 PM
Hi Grifmat,
Wonderful with the response to HLA matched platelets :)! Hope Promacta will help her too!
Kind regards
Birgitta-A

Birgitta-A
Wed May 1, 2013, 03:55 PM
Hi Grifmat,
Promacta is not yet approved for AA - only for ITP and Hepatitis C.
http://www.gsksource.com/gskprm/en/US/adirect/gskprm?cmd=ProductDetailPage&product_id=1353688574915&featureKey=603802

In clinical trials AA patients have responded.
http://www.ncbi.nlm.nih.gov/pubmed/22762314

It is very good that your mother can try Promacta either because she perhaps has ITP or off record (I have been treated with Thalidomide off record since 2010).
Kind regards
Birgitta-A

Grifmat
Wed May 1, 2013, 09:37 PM
Thank you Birgitta-A. I must've misread the info. They do have her dx with ITP and AA so they must be getting it due to the ITP. We are keeping our fingers crossed.