New to pure red cell aplasia

[triumphe64]

The congenital form of PRCA is called Diamond Blackfan Anemia.

Here is a website. There are others.

http://dbafoundation.org/learn-more/

[Fana]

I am very curious to know how does one get this parvovirus? On day 47+ after the transplant my son's hb was falling with 0 rectic count his transplant team said he has got PRCA and give IVIG for two days.after a week his rectic count started to increase.

[triumphe64]

Originally Posted by Fana

I am very curious to know how does one get this parvovirus? On day 47+ after the transplant my son's hb was falling with 0 rectic count his transplant team said he has got PRCA and give IVIG for two days.after a week his rectic count started to increase.

Parvoviris B19 is also known as Fifth Disease. It is one of the common childhood diseases that cause a rash. Most people get it but have few symptoms. It is not the same as the disease of a similar name that dogs get.

http://www.cdc.gov/parvovirusB19/about-parvovirus.html

[praarumu]

We had a visit to Doctor by Dec 29th and Hb got reduced from 8.4 to 7.4 but with reticulocyte count of 1.5 (Hb of 8.4 was maintained for last 6 months), hence doctor asked us to continue same dosage of predisolone and asked us to come back on Feb 23rd.

But My son looks pale and hence we took a Blood test today to see the Hb reduced to 6.4 but Reticulocyte count is 3.5

We have asked for the doctor appointment and we may meet him on coming thursday (29th Jan).

Is this expected that a sudden raise in Reticulocyte count? Or it indicated any problem?

If it is Genetic PRCA, Reticulocyte count would not increase right?

[triumphe64]

Originally Posted by praarumu

We had a visit to Doctor by Dec 29th and Hb got reduced from 8.4 to 7.4 but with reticulocyte count of 1.5 (Hb of 8.4 was maintained for last 6 months), hence doctor asked us to continue same dosage of predisolone and asked us to come back on Feb 23rd.

But My son looks pale and hence we took a Blood test today to see the Hb reduced to 6.4 but Reticulocyte count is 3.5

We have asked for the doctor appointment and we may meet him on coming thursday (29th Jan).

Is this expected that a sudden raise in Reticulocyte count? Or it indicated any problem?

If it is Genetic PRCA, Reticulocyte count would not increase right?

See my email reply. Try calling your doctor. I always got transfusions when my Hg fell below 8.0.

[gina66]

All doctors that I talked to would not accept the Parvo virus is the cause of PRCA. Although it is documented on any scholarly medical literatures that Parvo virus affects the red blood cell precursor. Doctors are saying that still inclonclusive that Parvo virus is really the cause but other underlying illness causing sensitivity to Parvo virus. I would say, for my case, I was ill from Parvo virus for about 6 months. I was not treated with IVIG soon enough. Viruses may cause auto immune diseases especially long term infection. It is probably the long term infection especially with Parvo virus. The symptom chronic severe anemia is the sequela of long term infection from Parvo virus. I am living with it for 3 years now. It is manageable but the long term effect especially with harsh meds and chemo may have adverse effects. My PRCA is due to immune mediated disease not because of bone marrow disease.

[triumphe64]

I know Dr. Maciejewski is studying all the viruses in the world as well as genetic mutations in relation to all these blood abnormalities. I believe progress is being made.

I will see him in five weeks.

[praarumu]

Hi All,

Do we have any update on the research on PRCA? My kid is still undergoing treatment of consuming predinisolone... But still his Hb keeps going low and high... shall I ask my doctor for any other drugs? I am much worried to see my 2 year kid consuming steroids for longer time...

[triumphe64]

Originally Posted by praarumu

Hi All,

Do we have any update on the research on PRCA? My kid is still undergoing treatment of consuming predinisolone... But still his Hb keeps going low and high... shall I ask my doctor for any other drugs? I am much worried to see my 2 year kid consuming steroids for longer time...

Patients that young usually have Diamond Blackfan Anemia.

Here is some information:

http://www.cdc.gov/ncbddd/dba/

http://dbafoundation.org/

[Laurie S.]

I'm returning to this forum, re-registered...we're going to Cleveland next week to consult with Dr. Maciejewski...my husband has been stable on cyclosporine for PRCA, so we've had 10 months of transfusion-free living...very nice respite...his doctor now has to treat his CLL (leukemia) again, so it's not clear if he can stay on the cyclosporine, or if a return to weekly transfusions is imminent...scary, but we're doing everything we can do...

[triumphe64]

Originally Posted by Laurie S.

I'm returning to this forum, re-registered...we're going to Cleveland next week to consult with Dr. Maciejewski...my husband has been stable on cyclosporine for PRCA, so we've had 10 months of transfusion-free living...very nice respite...his doctor now has to treat his CLL (leukemia) again, so it's not clear if he can stay on the cyclosporine, or if a return to weekly transfusions is imminent...scary, but we're doing everything we can do...

Best of luck. Let us know what he says.

[Laurie S.]

We met w/Dr. M, very informative... my husband's co-occurrence w/CLL (chronic leukemia) has made treatment more challenging... Dr. M. gave us a list of tests for the local doc, with suggestions for next treatment, and we hope that the 2 docs will confer to give us a treatment plan going forward... one very helpful detail is the approach to maintain on the lowest possible dose of cyclosporine but not necessarily taper completely... we've been trying to advocate for this w/out success so far, and hopefully doctor to doctor conversations will help.

[LynneR]

Hi my name is Lynne. I have been dealing with red cell aplasia for close to a decade now and just joined this forum hoping to see something new that has worked for someone else. My retic count dropped to zero for the first time about 9 years ago. Tried Rituxan and then cellcept and eventually went into remission for a few years. This time after the disease returned, I had a some lung issues when taking cellcept, so I switched to an older version of the drug, Imuran. So far, over 6 months and no improvement. The only change is now I have iron overload and am on Exjade. It would be really nice to talk to others with this disease. It is very lonely knowing no other person with this illness.

[Hopeful]

Hi LynneR,

There is a recent online video by a doctor from the Cleveland Clinic titled "What is Pure Red Cell Aplasia? Understanding Diagnosis and Treatment" that you may find interesting. Here is the link:

https://www.pathlms.com/aamdsif/courses/3428

Also, I would encourage you to attend one of the AAMDSIF conferences, if they are offered near you. They are a great opportunity to talk with others sharing the same diagnosis.

Wishing you well -

[triumphe64]

Thank you Hopeful,

I haven't checked this board lately.
You gave Lynne Very good advice. There is a very active Facebook group for Pure Red Cell Aplasia. I think Lynne has found us and we have been able to provide some help.

PS: That video by Dr. Maciejewski is very good, and I encourage everyone on ALL of the Marrowforum boards to attend the www.aamds.org conferences.
There are six scheduled this year.