possible remission but large red cells.

[BerryP]

Hi I wonder if anyone can help. Diagnosed SAA two and a half years ago and had rabbit atg which did not work. On ciclosporine and blood transfusions every four weeks. Since December 20th no blood needed, counts now Hb 9.3 neutrophils .8 and platelets 59, all very good for me. However my General Practictioner found large red blood cells (a lot) and thought I might have B12 deficiency. I am very up and down at the moment as some days I feel dreadful and occasionally I have a good day. Is this remission, and will things resolve or do I need to go and see my consultant. My GP wrote to the consultant three weeks ago and we have still had no answer. She suggests I ring his secretary and ask but I don't know if there is any need to be pushy. Anyone got any advice? I am in the UK but since I have never had remission before I don't know if this is how it starts then stabilises. Heres hoping. Best wishes to all Berry.

[Karenish]

I took 10 months before my counts started to climb, now 2 years after Rabbit ATG hb is 11.5, white and neuts normal and plates around 60 -78. If you have become transfusion independent then I would say you are getting there, but remember it takes a long long time, eat well, drink lots of water and dont eat process foods. When you get tired, then rest! never heard of large cells so not sure what that is about to be honest. You can get B12 injections which can increase your platelets. Neuts need to be a little higher I think. The counts fluctuate a lot, we notice because they are on the low side.
Have you tried to speak to Judith Marsh at Kings? she is the UK leading consultant on AA and she is very very helpful xxx Karen

[drarasu2002]

It may be B12 deficiency as your GP suggested.you are on folic acid?you can take B12 also.counts fluctuate a lot.Be cheerful.you will be alright.

[Sally C]

Hi BerryP,
My husband has MDS and right now his RBC is normal. However, our hematologist told us that he has "giant" red cells. It is my understanding that the MCV - Mean Corpuscle Volume - is the measure of that. Don's is quite high. But she also said that the giant cells are evidently doing the job - he does almost anything he wants without any negative effects from their size. I have also heard that the MCV is a measure of bone marrow stress - maybe they go hand in hand. But I do trust what our Dr. says MCV means (size of red cells) - she specializes in MDS and is an expert.
I know this doesn't give you any personal information but I did want to tell you that maybe it is a result of your AA - and that the large red cells may not hamper your health or activities.
Best wishes,
Sally

[LoveRapheal1]

Originally Posted by BerryP

Hi I wonder if anyone can help. Diagnosed SAA two and a half years ago and had rabbit atg which did not work. On ciclosporine and blood transfusions every four weeks. Since December 20th no blood needed, counts now Hb 9.3 neutrophils .8 and platelets 59, all very good for me. However my General Practictioner found large red blood cells (a lot) and thought I might have B12 deficiency. I am very up and down at the moment as some days I feel dreadful and occasionally I have a good day. Is this remission, and will things resolve or do I need to go and see my consultant. My GP wrote to the consultant three weeks ago and we have still had no answer. She suggests I ring his secretary and ask but I don't know if there is any need to be pushy. Anyone got any advice? I am in the UK but since I have never had remission before I don't know if this is how it starts then stabilises. Heres hoping. Best wishes to all Berry.

Did your cell counts just rise by themselves? Did you try another treatment or remedy. I'm interested in knowing what increased your counts. I wish I could answer your question about large red cells but I would ask if you can receive injections. Then again I am not a doctor but I had them once when I was first diagnosed with aplastic anemia.

[BerryP]

Hi all, thanks for your help. Sadly counts have dropped again and on return to Doctor she still wants me to pester the consultant. I think I will need blood next week so perhaps remission happens very slowly. I notice that the very dizzy (i.e. losing conciousness turning over in bed) and extremely sore mouth have receded so one step forward and one step back is ok. Does anyone have "trampoline blood" that feels as if its bouncing around in your veins. So grateful you are all here. Love Berry