PRCA

[teo]

Hi all,

My mom Might dx with PRCA, still waiting for the final answer from the Hema. Waiting for the BMB results, 2 more weeks. I started to search for more info about PRCA and found a promising treatment which i would like to share with everyone. You might already know about this but good to have it in the forums i guess

http://www.ncbi.nlm.nih.gov/pubmed/20207845

FYI. I will continue update my mom status on the current thread (http://forums.marrowforums.org/showthread.php?t=3200) till she is confirmed as PRCA then i will switch to this thread.

If anyone with mAA and PRCA have try with Daclizumab before (found some threads in the forum), much appreciated if you can share some of your experience with me. Thanks in advance.

[triumphe64]

teo,

These are all the top doctors in bone marrow failure as authors.. I go to Dr. Maciejewski, one of the authors.

Dr. M. tells me there are four or five treatments available to me in case my drug treatments fail. I suspect they became available after I started treatment. I don't know what the preference is.

My Hg has reached the lowest part of the normal range for a year now. Because of that, they are not about to change treatment at this time for me. If I were a new patient, they might have a certain one in mind.

[teo]

Hi Triumphe64,

Thanks for the info. As you mentioned your Hg is on the lowest part of the normal range, why not get a BT as this will improve your Hg plus other counts i guess. is it because of the drugs you are taking now ? Just curious.

So far i have found all these possible treatments available for PRCA from the forum. They might be more. I noticed that most of the people dont recommend PREDNISONE.

1) zenapax/Daclizumab
2) EPO (Epogen, Procrit) and Darbeprotein (Aranesp)
3) prednisone and cytoxan (cyclophosphamide)
4) Antithymocyte globulin ( ATG)
5) IVIG, cyclosporine and prednisone, cyclosporine, Danazol, and prednisone
6) Spleen removal --- I dont know whether this is good to do or not.
7) Rituxan (Rituximab)

I will get opinions from the hema about all the possible treatments above. If you have any comments or thoughts about this, please do share with me. Thanks.

[triumphe64]

All of these treatments are a trade off of some sort for the effects and side effects..

I only take 2 1/2 mg prednisone every other day. When I took none, my Hg dropped. My doctor here in Dallas says she has many patients who take a very small dose of some med that seems to do more than it should.

Sometimes PRCA is really LGL. It is important to know, even though the treatment is the same.

EPO is not a good treatment. It is an old treatment. If you research causes of PRCA, you will find EPO can actually cause PRCA. I wonder why Lance Armstrong and his friends all escaped this side effect or high levels of ferritin from transfusions. But I digress.

[teo]

Thanks for the information about sometimes the PRCA might be LGL. I will check with the hema.

I checked the web a bit on LGL, seems it was caused by WBC (Lymphocytes).

According to my mom CBC attached, seems the counts that are going low along the time are Hg and RBC. The WBC & Lymphocytes (mostly within ref range) always within the normal range.

[triumphe64]

I'm not sure how helpful this will be, but you should be aware of it.

http://clinicaltrials.gov/ct2/result...ell+Aplasia%22

[teo]

Thanks Triumphe64 for the link.

For sure it is helpful as knowing more is always good than knowing nothing/less about this disease.