Parvovirus B19

[maria&lola]

Hello, all! I don't post much but check in from time to time to see how you are all doing. Know that you are in my thoughts and prayers!

My mom is in her 7th cycle of Dacogen with no real improvement. She is getting a transfusion about every month.

We just spent an awful weekend in the hospital because we waited too long to schedule a transfusion. Ended up going by ambulance and then spent 7 hours in the ER before they transferred her to a room...transfusion didn't start for another 4. Then, the attending didn't write discharge paperwork so they were just going to keep overnight. It was going 20 hours and even on the renal floor they didnt bother to dialyze her so we were fed up and left without orders. Argh! So exhausting.

Anyway, while I was with her, I was researching a possible virus that my kids have--fifth's disease. A common childhood virus (parvo b19)that is often characterized by bright red cheeks aka slapped cheek disease. I read that it is ver contagious and can be problematic for anemic adults because it can suppress red blood cell production and cause acute anemia requiring transfusion.

I made a couple inquiries and was told that parvo b19 was more a concern for the immuno-suppressed like organ transplant patients...that mom was likely due for a transfusion (duh, we live this life...i didn't think the virus brought it on)...and that we could watch and wait for cold like symptoms (not worried about the cold symptoms thank you!)

What I was trying to get at, was could my mom have this on top of her condition and that it could further exacerbate her anemia...even chronically as the virus can be hard to shake. My mom lives with us so she is exposed to these childhood viruses frequently and I'm always worried what they could do to her. This was the first time I ever read up on something that actually called out anemia.

I'm not even sure if this is what my kids had, they don't normally even see kids for it because it is so common and will just ride out...but am I being crazy to look into this? Yes, I am a google crazy mother/daughter!

[triumphe64]

I have pure red cell aplasia. B19 is one of many possible causes of this. It only relates to red cells. There is currently an active poster who has PRCA from parvo. Mine is due to other causes.

This is a common childhood disease that most people get. It does not usually cause any problems. Any kind of drug that suppresses the immune system can make one more likely to get an illness, including parvo. For example, I got shingles and my doctor insists that I get an annual flu shot.

[maria&lola]

Sorry to hear about the shingles...that can be nasty to deal with!

I did read a little a bit about PRCA. My mom was indeed diagnosed with MDS but only gets RBC transfusions. I don't really think it is the cause, but rather I would hate for her to be carrying around a virus that could be counteracting her work to maintain her counts. These Dacogen treatments every month are the pits!

[triumphe64]

PRCA is very rare and MDS more common. I know my doctor originally assumed I had MDS. It took three BMBs to get a good diagnosis. I'm assuming that, even though she only needs red blood, that her other counts are low and that her BMB confirmed MDS.

[gina66]

I have PRCA due to parvo virus infection. First thing that you can ask a doctor is to do parvo virus test by PRCA. Then if positive, IVIG is the first treatment. My low hemoglobin=blood transfussion continues since I had it in Nov 2011. I have tried cyclosporin with prednisone for 6 mos. Now, I am taking cyclosphofomide for 2 mos now with prednisone. Doctors will try to use different meds to see what works. I will communicate with you again.

[Katinka]

Hello Gina66,
Just wanted to write that I have also anemia because of an undetected parvovirus b19-infection. First, I was diagnosed MDS RAEB 1, at our local hospital. Then I consulted a specialist for MDS who did not confirm this diagnosis. He found a very high IgG for parvovirus by PCR. Currently, I have no treatment (Hb is at 8,6). In july, I'll start prednisone. I'm 38 years old and I live in Germany. Seing forward to your reply and to any other reply. Please excuse my low level english. It has been a while since I practised it.
Katinka

[triumphe64]

Katinka,
Are your white cells and platelets affected?

[Katinka]

Hi triumphe,
Thanks for your reply. I have neutropenia, but my doctor says, that this is "secondary" neutropenia due to the large amont of lymphozytes in my blood as a reaction to the parvovirus. The infection is over, my IgM is 0. Still my immune system believes to recognize the virus on my erythrocytes and therefore destroys them. My platelets are in the normal range.
At the moment, I don't have any name for my illness. The last diagnosis that was mentioned at the doctor's letter called it "parvo virus associated anemia". I think the parvo virus declenched the auto immune phenomene that I have now.
My last normal blood work was in summer of 2011 (Hb 11,2). Since then, my Hb decreases slowly.
How are you? I already read your posts, because this forum is my favorite source of information since november 2012 when I got my initial dx MDS RAEB 1, which wasn't right, luckily. I'll try to add a signature to my profile, when I have more time.

[triumphe64]

I am fine. My Hg is now solidly in the normal range, but I am still on all of the meds except the prednisone and cyclosporine are almost at zero.

Your case sounds more like gina, but I'll let her comment on that.

[Katinka]

Triumphe64,
What meds are you on and what are their effects? I have never heard of Danazol, for example. Usually, the meds have different names in Germany. I'll get a very high dosage of steroides during 5 days in july. Do you have any side effects of the long terme prednisone? I tried IVIG in april, my RBC stabilized and I felt much better (more lively), my LDH improved, but finally IVIG wasn't able to stop the hemolysis. Maybe repeated administration of IVIG over a longer period would be more effective?!
Have a nice weekend......Katinka

[billyb]

We start our 8th cycle of Dacogen Monday, we have had zero improvement in blood count numbers, for some people that is the trade off, Dacogen keeps the leukemia surpressed but on the flip side keeps your counts low, we get 2 bags of blood and 1 bag of platelets per week, just keep an eye on your moms counts, if you see a change in her disposition keep an eye on her tempture, temps are a tell tale sign of what an infection is doing. Basicly what im trying to say is if on Dacogen for 7 months where ever your counts are at now COULD be your new normal limits, it helps to keep a spread sheet of your blood reports so you can compare results, if you have a computer you can do this easily on excell it really helps when trying to see how the counts are reacting to treatment

[triumphe64]

Originally Posted by Katinka

Triumphe64,
What meds are you on and what are their effects? I have never heard of Danazol, for example. Usually, the meds have different names in Germany. I'll get a very high dosage of steroides during 5 days in july. Do you have any side effects of the long terme prednisone? I tried IVIG in april, my RBC stabilized and I felt much better (more lively), my LDH improved, but finally IVIG wasn't able to stop the hemolysis. Maybe repeated administration of IVIG over a longer period would be more effective?!
Have a nice weekend......Katinka

I don't have parvovirus B19. Mine is autoimmune. I started Danazol about four years ago, and my Hg counts slowly began to improve after about nine months. Danazol is androgen, a male hormone, and it makes red cells as a side effect. Yes, they give it to women, too. I have only taken minimal amounts of prednisone for three or four years now (2.5 mg every other day) I am also down to only 25mg cyclosporine per day. Once my counts reached 11 Hg after I started taking Danazol, they started reducing the amount of that drug. There are long term effects of prednisone. Ask your doctor. This whole thing is a trade off. Having a well trained and experienced doctor is really helpful. They are hard to find because these diseases are so rare. It is hard to compare cases on these boards because of the subtle differences. As mentioned before, your case sounds more like gina66 than mine.

[gina66]

Hi Katinka. I had Parvo virus infection and IVIG took care of it. But, my Hg did not improve so I still have to do blood transfusion every 3 weeks. I tried cyclosporine with prednisone, cyclosphosfomide with prednisone, now we are trying campath. The theory is that due to long prd of infection, my t-cell maybe also my B-cells became hyperactive and started attacking my own cells. My RBC is the only affected cells so far. I have not heard that Parvo virus affects other cells. Maybe that is why your Dx is MDS because your other blood cells are also affected. AA or Hemolytic Anemia also affects several blood cells at the same time. That would be tested in different ways. You can do research on them. Recently, I am researching(internet) about Cancer such as Leukemia or Lymphoma and Parvo Virus connection. There were few incidents that cancer patients after being treated with Rituxan, Parvo virus infection was found. I am hoping that with me since Parvo virus infection came first, maybe, it killed all the infected cancer virus...LOL. I had PET scan, no cancer, last yr's bone marrow-no findings of cancer, no symptoms of cancer. There is CLL (Chronic Lymphocytic Leukemia) that slowly progressing and does not show symptoms and not traced as cancer for yrs. I am hoping and earnestly praying that this is not what I got. Hopefully, my T-cells and B-cells are just out of order and can be regulated by the next medicines. Triumphe64 is very supportive and He did refer me to a good Dr. in Cleveland Clinic. I read this good bone marrow Dr. at UCLA in California - Dr. Pacquette. My insurance right now takes Cleveland Clinic. Best regards.

[Katinka]

billyb, triumphe64, gina66,
thank you very much for your responses. I'm keeping you in my thoughts. Best regards, Katinka.