ATG+ Cyclosporine

[ussoccer004]

Hello guys, I had some questions and concerns and from the veterans who have gone through this already any feedback is greatly appreciated. I have PNH already and my ANC is constantly .5 with a WBC of 1.9-2.1, Hemoglobin is at 10 and platelets are at 130K. My lymphocytes stay around .8.

I have talked with my doctor and have gone to the NIH about my condition, they believe it all started because of the EBV (epstein barr virus) and turned into autoimmune aplastic anemia. I respond well to Prednisone which bring my counts into the normal range and currently I am on Soliris which has been a miracle drug in my perspective and what I was dealing with before Soliris.

My fear in starting ATG+ Cyclosporine is the JC Virus, which I am reading a majority of the population has the virus but due to a healthy immune system lies dormant. We are wanting to try ATG+ Cyclosporine to bring my counts into normal range again and see if I maintain these counts.

I have read of patients with worse ANC of .2 and .0 going forward with ATG, minus the side effects of the drugs they have a positive outlook based on the drugs.

Is the fear of JC Virus/ PML a legitimate concern with this treatment?

At this point I understand the risk of MDS or any cancers, I am just tired of getting sick from the low white blood counts.

[Cheryl C]

My WCC and other counts are normally lower than yours, but I manage to keep well most of the time. I used to get lots of infections. A couple of natural easy things I've found helpful in avoiding infections (you may already be familiar with these):

1. Avoid foods containing cane sugar. Unheated honey is fine.
2. Take 5000 mg Echinacea and a product containing astragalus as soon as you feel a sore throat starting and continue until the soreness is gone.
3. Be fanatical about hand washing.
4. If you are prone to urinary tract infections, have cranberry capsules on hand and take them on the slightest hint.
5. Coconut oil is an antiviral. Read more on http://www.coconutresearchcenter.org/index.htm
6. Clean wounds/bites with hydrogen peroxide ASAP.

All the best!

[Amz904]

Hey ussoccer004,

I actually got ATG and cyclosporine when my ANC was .0 and my WBC was " less than 0.1" in early January. Due to my low counts I did face a small rough patch with my fair share of infections/viruses. But thanks to some heavy duty antibiotics, I made it through fine and have been infection and fever free since the end of February! (My counts now are ANC: 0.5 WBC: 1.0 with the numbers continuing to rise)

Have you talked to your doctor about maybe getting Neupogen shots? They can help boost your WBC temporarily after treatment while your body starts making WBC on its own to help lower your chances of getting any of the viruses you fear! In my case since my counts were initially so low, the shots never worked (probably since there was nothing happening in my bone marrow for the neupogen to stimulate) but in your case since there is at least something happening in your bone marrow, theres a good chance it can help!

[ussoccer004]

Originally Posted by Amz904

Hey ussoccer004,

I actually got ATG and cyclosporine when my ANC was .0 and my WBC was " less than 0.1" in early January. Due to my low counts I did face a small rough patch with my fair share of infections/viruses. But thanks to some heavy duty antibiotics, I made it through fine and have been infection and fever free since the end of February! (My counts now are ANC: 0.5 WBC: 1.0 with the numbers continuing to rise)

Have you talked to your doctor about maybe getting Neupogen shots? They can help boost your WBC temporarily after treatment while your body starts making WBC on its own to help lower your chances of getting any of the viruses you fear! In my case since my counts were initially so low, the shots never worked (probably since there was nothing happening in my bone marrow for the neupogen to stimulate) but in your case since there is at least something happening in your bone marrow, theres a good chance it can help!

I think neupogen is probably the way to go at this point. Are you aware of any long term side effects? Being on the shot for years. I am happy atg worked for you. I also hope it keeps getting you to where we should be.

[ussoccer004]

Originally Posted by Cheryl C

My WCC and other counts are normally lower than yours, but I manage to keep well most of the time. I used to get lots of infections. A couple of natural easy things I've found helpful in avoiding infections (you may already be familiar with these):

1. Avoid foods containing cane sugar. Unheated honey is fine.
2. Take 5000 mg Echinacea and a product containing astragalus as soon as you feel a sore throat starting and continue until the soreness is gone.
3. Be fanatical about hand washing.
4. If you are prone to urinary tract infections, have cranberry capsules on hand and take them on the slightest hint.
5. Coconut oil is an antiviral. Read more on http://www.coconutresearchcenter.org/index.htm
6. Clean wounds/bites with hydrogen peroxide ASAP.

All the best!

Definitely will be looking into this. Have you ever had mouth ulcers/ sores on the inside of your mouth? Canker sores?

[Cheryl C]

Yes ussoccer04 - I used to get mouth sores but not for a long time now. Coconut oil pulling, or swishing around Active+ antibacterial Manuka honey (Medihoney is a common brand) are very good for mouth sores.