pred/cyclosporine after relapse

[3blankets]

Okay, so I started relapsing about 4 months ago, and three weeks ago my doctor started me on prednisone and cyclosporine. I know some of you have tried this after a relapse with atg. I had the atg in Nov of 08. I was wondering how long it might take to see some improvement to my blood counts (if there is going to be any improvement.) It seems like after two weeks, my counts were not decreasing...but had not increased. thanks!

[mscrzy1]

I'm sorry in that I have no answers for your questions. I am curious to follow if it works for you, however. I'm in the process of what they believe to be either a relapse of AA or a morph into MDS. I'm curious, though, when you noticed a relapse, did your counts drop quickly or was it a slow decline?

[Susy]

Interesting question regarding any prior auto-immune issues.
I was diagnosed with LGL Leukemia in July 2009, due to pancytopenia and low ANC. Was treated with prednison & methotrexate, cyclosporine, and then cytoxan in Aug. 2010. My need for transfusions went from needing 2 units every 8 weeks, to needing 2 units every 6 weeks once I started on the cytoxan.
All counts dropped drastically, my ANC was .300, and I got pnemonia in Oct. '10. Went back to the Mayo clinic for another bone marrow biopsy, and was then given the SAA diagnosis and immediately went through the ATG treatment Dec '10.
My counts are low but stable. Last platelet transfusion Dec. 16th - last blood transfusion Jan. 21 '11. Hgb has been hovering around 8.4 - platelets have shot up to 50.
Doctors are still scratching their heads if I still have LGLL, or if I was mis-diagnosed and had AA all along. I wonder (though I am not a doctor, don't play one on t.v - just visit one on a bi-monthly basis) if the cytoxan had anything to do with my SAA?

[Hawaii Bill]

I also relapsed after my first ATG treatment. We tried increasing my Csa to 200mg twice a day. At the time, I was getting red blood every 2-3 months and platelets only occasionally. My hgb stayed in the low 8s and my platelets hovered in the low 20s.

A month after I started the new dosage, I needed another red blood transfusion, but after that transfusion, my hgb counts declined slower, and about 5 months after the new dosage, the hgb started climbing on its own.

It took a little time, but it worked.

Best wishes.

[3blankets]

Originally Posted by mscrzy1

I'm sorry in that I have no answers for your questions. I am curious to follow if it works for you, however. I'm in the process of what they believe to be either a relapse of AA or a morph into MDS. I'm curious, though, when you noticed a relapse, did your counts drop quickly or was it a slow decline?

I guess you could say it was a slow decline. I had atg (horse) in November of 2008. I was on cyclosporine until September of 2009. My counts were pretty good at that time, Hematocrit 36/platelets 100,000/wbc hovered in the high 2's. My decline started in August of 2010. They blood counts dropped a little bit every month. Now my Hematocrit is 26/platelets are 35,000 and whites are still in the 2.5 area. Hopefully the cyclosporine and prednisone will work, or I guess it will be another round of atg. I have two brothers but neither is a match for a bone marrow transplant. Although I do have some good matches in the bone marrow registry. I am terrified by the thought of a bone marrow transplant!

[Aodhán]

I'm more or less in the exact same position as you. I had ATG in August '08 and my bloods eventually had recovered fully by around this time last year.

Around last Christmas I started to relapse and the bloods fell very quickly. They put me back on cyclosporine (I had been off it for around 6 months), this time on 200mg/2 which seems to have stabilised things. My platelets are very slowly creeping back up and white cells are average. My Hgb has remained at around the 9-10 mark and don't seem to be going up at all.

My doctor told me the other day that it's quite likely that it won't go up any further which disappointed me a lot because I was expecting them to go back to normal levels like they had been before the relapse. Personally I find it much harder day-to-day to get by on this amount of blood compared to having higher red blood counts.

I know how you feel in relation to the transplant, neither of my siblings are a match either and despite the potential benefits of an unrelated transplant, the idea of a transplant scares me a lot and I really want to avoid it if I can.

Hawaii Bill's story sounds promising and I hope we have his success. Best of luck

[3blankets]

Aodhán,

I know what you mean about finding it harder to get through the day on lower blood counts. Before I knew I was sick I felt tired all the time, but had three small children and just thought it was that. When my counts got better after the ATG, I couldn't believe how much energy I had!! I am back to feeling tired and wanting to take a nap most days. I am not working and cannot imagine putting in a full day of work. I both we have good results from the cyclosporine

[3blankets]

Just an update, I have been on 100 mg of cyclosporine daily for three months and have just seen my first blood count improvement. Hct 29%, wbc2.6 and platelets 52000. I hope they get even better, but I am pretty happy with this.

[Neil Cuadra]

It must have been hard to wait so long to see your counts improve, even though the doctors tell us that it can take months. Congratulations, Erin!