Platelets low post BMT for my son

[Shannon D]

My 10 yr old son was diagnosed with Severe AA over 5 years ago. Went thru 2 ATG treatments that only worked for a short time and had unrelated BMT in October 2015. Developed skin GVHD and CMV virus started to show up as well. Platelets came in first after transplant and then whites and red cells. Was treated for GVHD and now CMV . CMV is almost gone but at about day 60 post transplant red cells and platelets were being chewed up. After being switched off Cyclosporine and to Tacro the red cells are starting to slow but his platelets are getting destroyed at a very high rate now. He will get a transfusion and the next day platelet count already will be down to approx 5k-10k. Could use some advice from anyone who has experienced a similar outcome and what treatments may have corrected this? About at day 75 post transplant and a very frustrated parent right now ???? Please help .......

[Marlene]

Platelet are pretty unpredictable when it comes to transfusions. It's not unusual for them not to take. Even when you get a bump, it usually doesn't last long. Your own platelets only live for 8 -10 days so that would be lessened for transfused platelets since you are getting someone else days later and all in different stages of their life cycle.

That being said, you may want to check the expiration date of the platelets and ask them to transfuse fresher ones if the platelets are nearing their expiration date. IMO, those needing frequent transfusions vs one-timers say for surgery, should get the fresher products. You would like for the transfused products to last as long as possible to reduce the overall number of transfusions.

Also, Single Donor platelets may work better. When John was in the hospital, Johns Hopkins would "match" his platelets. He would get huge bumps with matched platelets. They had their own blood blank and could spend the time to match them. Not many places do this.

Some have gone through the trouble to set up "directed donor" transfusions where they have friends and family donate platelets. They are matched to the patient. It's a lot of coordination and cannot be put in place immediately. The intent is to find 8 or 10 people whose platelets work and have them donate at a scheduled interval. However, the patient, overtime, may become refractory to those too.

If there is no active bleeding, then maybe consider holding off on transfusions if the platelets are holding at 5-10K range.

[DanL]

Shannon,

I had my transplant almost 2 years ago and only in the past 3 months have had my platelets rise above 60k. They are now at about 275k. I had been fighting gvhd and a few infections, but none of them at what was considered a "clinical" level, meaning that i did not have any real proof of more than a level one gvhd anywhere. About 3 months ago, i was in the hospital treating pneumonia, and i think that one of the combinations of antibiotics finally knocked all of the junk out of my system, and since then my platelets have been on a steady march forward. Prior to three months ago, I had not had more than 60k platelets since 2 years prior to diagnosis, which would mean 7 years ago.

keep an eye on the platelet levels, but the big thing is to make sure they are stable and not declining and that there aren't any other factors contributing to lower numbers, such as other medications or dietary factors. The other thing that happened about 3 months ago is that we started dropping some of the medications, including voriconazole.

[Shannon D]

Thanks for the info Dan, very interesting because my son had level 2 GVHD and also now is on Voriconazole himself. I am curious what other drugs cause low platelets as he in taking close to 25 pills a day right now.

[DanL]

Shannon,

The GVHD alone may be responsible for the delayed platelet growth, especially if the biopsies are looking good. My doctor gave me 6 cycles of rituxan to get me off of steroids, which i forgot about in my last post, but Rituxan is frequently used to treat ITP and has recently been experimented with for managing GVHD to spare the use of steroids. Rituxan tends to be very manageable in terms of side effects - I have been treated with it twice for 6 cycles each time - once 6 years ago and then another time this last year. Although Voriconazole is not known for suppressing platelets, it was an interesting coincidence in my case that I stop Vori and get platelets. I have been working my way down from 30 pills twice a day and am down to about 30 per day total which is great. I know that one other drug - bactrim (used for pneumonia prophylaxis- can have very strong anti-platelet activity. I also responded very poorly to sirolimus and had to back off both times i tried.
Keep a positive attitude and know that this can be a long period of trial and error and correction to find the right combinations - some steps backward - I wish the very best for you and your son.

[PaulS]

Hi Shannon - I am about 120 days post transplant - My platelets had been rising until I developed GVHD about two months ago - at that time they started dropping and I started taking a lot of prednisone - the GVHD improved but after tapering the prednisone they reached a stalemate. They started me on Rituxin and after four treatments the GVHD is almost gone and they are continuing to taper the prednisone. - my platelets are still hovering around 20-

My doctor thinks the GVHD is consuming the platelets - and expects them to start rising I think once the GVHD is gone - which will hopefully be soon. I'm also on mycohenolate - which my doctor has said could also be suppressing my counts - (not sure if he meant all counts or just RBC) and he plans to start taking me of that was soon as the prednisone is tapered to around 20mg per day.

Hope that helps,

Best wishes
Paul