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#1
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News after 8 weeks of ATG
Hi!
Now that 8 weeks has passed since my husband had ATG treatment had the hospital, we heard for the first time the words "This is beginning to be fine". Hb - 9.1 (had blood transfusion 1 week ago; but he can be with no transfusions for almost 3 weeks) Platelets - 64 (last platelets transfusion was 3 weeks ago) Neutrophils - 1.7 His main problem is feeling weak and tired. Doctors say it might be due to low magnesium in his body - a cyclosporine side effect. Cyclosporine dosis by now is 150 mg/day. He has no appettite at all which is being other complain. Does anyone experienced that? He and I feel a little concerned about this because Jorge ate very well until now. I never knew him without wanting to eat.
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Preview Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010 |
#2
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Supplements
Hi
You mentioned low magnesium. Just wanted to share that my doctor put me on magnesium and potassium supplements ever since they started me on the cyclosporin, to offset its effects. The magnesium supplements are 400 mg day, and the potassium requires a prescription (I think it's 10 something units). Obviously you should ask your doctor if it is appropriate in your case. |
#3
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I was on cyclosporine for three years without being on any of these. I had a lot of muscle cramps, shaking, and an unsteady feeling in my legs. I was put on magnesium oxide (400 mg twice a day) in April. It took a couple of months to kick in, but I am almost normal. I will ask about the potassium at my next doctor's appointment.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#4
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Hi, Paula.
It's good to know that Jorge is doing well after ATG. Hawaii Bill is right that magnesium and potassium supplements are usually needed with cyclosporine. I got magnesium by IV for months, which took a lot of time, until the doctor said, "You know you could take magnesium tablets instead." What a relief that was! As I recall, the prednisone I took with my cyclosporine provided more than enough stimulation for my appetite. It would be worth asking the doctor about this. Maybe Jorge should try to be a little more active each day as he is able to. Regards, Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98 |
#5
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Prednisone
Hi Paula,
I just wanted to add to what Ruth said that Prednisone can affect different people in different ways. For some it increases appetite, but for my husband it had just the opposite effect, making everything taste funny. He lost some weight while he was taking it because he couldn't stand the taste of most foods, but that went away as soon as he discontinued it. Is Jorge taking Prednisone?
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine |
#6
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No appetite
Paula,
My son Jesse (9yrs old) has AA. Diagnosed 6/19/08. On Cyclo 1.5 in a.m and 1.25 in p.m. He was a big eater and now it's less often and just less. He isn't really losing any weight (yet). We are 7weeks into treatment and are now seeing platelets go up and hold longer (hit a high of 31, now at 28). Hemoglobin is at 9.5, which is very high for Jesse. To see results at 7 & 8 weeks, I think is amazing! Jesse's Mom (Barbara) |
#7
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Thank you all!!!
Hello!
I'm so grateful for your posts. You're always of much help to me. My husband is having magnesium supplement. I'm posting a new topic with more news and questions... Than you all!
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Preview Paula Espada - wife of Jorge Espada, diagnosed AA in June 2008, ATG, cyclosporine until Janury 2010, relapse and 2nd ATG June 2010 |
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