ATG+ Cyclo , four months done, little improvement

[Satish Chandra Misra]

Hi There
I am 61 yrs old and have been diagnosed with SAA with cellularity of 15%, needing transfusion of PRBC and platelets every 10 days. That was in 07/14. Had my ATG done in 11/14 and since then on cyclosporine. Initially cyclo had adverse effect on my food intake and I didn't feel like eating. The creatinine level reached to 8(5 times the normal limit). Due to this the doctors stopped the Cyclo which was 300 mg per day. I ran without cyclo for about 20/25 days. Then later they again started with initial dose of 100 mg per day since jan 2015. This amount of medicine is bearable to me and I am able to take some food. The doctor has also added Danazol 100 mg twice hoping that it might help.
All the improvement that I could witness till now is the duration between transfusion which has improved from 10 days to 15. My major concerns are as under

1) Is 100 mg cyclo is enough or should I try to increase it to 150 per day ( 73 kg weight)
2) The retic counts are not improving and hovering around 0.1 to 0.2 ( normal 0.5-2.5). Why is that the retic keeps fluctuating
3) With this kind of experience should we be hopeful of a recovery in terms of transfusion free life. BMT is not possible since there are no siblings and finding HLA matching donor will take a lot of time
4) Any other options ???

[Hopeful]

Originally Posted by Satish Chandra Misra

1) Is 100 mg cyclo is enough or should I try to increase it to 150 per day ( 73 kg weight)

I would carefully monitor whether your kidneys are able to tolerate cyclosporine before considering increasing the dosage. Did your creatinine come down to your baseline level when you were off the drug?

Based on my experience, I would think that 100-150 mg/day is too low. However, you may not be able to tolerate any cyclosporine, based on your adverse reactions to it. Hopefully, you will have a response to Danazol.

Originally Posted by Satish Chandra Misra

2) The retic counts are not improving and hovering around 0.1 to 0.2 ( normal 0.5-2.5). Why is that the retic keeps fluctuating
3) With this kind of experience should we be hopeful of a recovery in terms of transfusion free life. BMT is not possible since there are no siblings and finding HLA matching donor will take a lot of time

I would start the donor search while you are waiting for a response. It is still to early to tell if you will respond, but it is good to be proactive.

Wishing you the best.

[Fana]

My son was diagnosed with VSAA his cellurity was 5%. We had a Allogeneic BMT last September after the transplant his retic count was also hovering around .1 to .2 then it dropped to .0 his Hb also started to fall. After a transfusion he was given IVIG for 2 days a week later his retic count started to go up. Since then his retic count has gone up now it's in the normal range and that was the last transfusion he had . All the best

[Satish Chandra Misra]

Hi Hopeful
The creatinine levels did come down to normal level after stopping Cyclo.
I have increased the dosage to 200 mg per day (100 twice)
Lets see what happens now. Having my meals as usual and no complications so far. Will check the creatinine after 3 days and let you know. Hopefully things should turn around.

Originally Posted by Hopeful

I would carefully monitor whether your kidneys are able to tolerate cyclosporine before considering increasing the dosage. Did your creatinine come down to your baseline level when you were off the drug?

Based on my experience, I would think that 100-150 mg/day is too low. However, you may not be able to tolerate any cyclosporine, based on your adverse reactions to it. Hopefully, you will have a response to Danazol.




I would start the donor search while you are waiting for a response. It is still to early to tell if you will respond, but it is good to be proactive.

Wishing you the best.

[Hopeful]

Hi Satish,

I'm glad that you are feeling better. I just wanted to clarify that my previous comments were pertaining to the modified form of cyclosporine (Gengraf/Neoral) and NOT Sandimmune. The dosing for Sandimmune is completely different, and I have no experience with it.

[Satish Chandra Misra]

Hi hopeful
I have been taking Sandimmun Neoral from Novartis. Hope this is the best available form of Cyclosporin.

Originally Posted by Hopeful

Hi Satish,

I'm glad that you are feeling better. I just wanted to clarify that my previous comments were pertaining to the modified form of cyclosporine (Gengraf/Neoral) and NOT Sandimmune. The dosing for Sandimmune is completely different, and I have no experience with it.

[Hopeful]

Very confusing...We don't have SandImmun Neoral in the US, to my knowledge. It is either SandImmune or Neoral, and they are not bio-equivalent and are not interchangeable.

The best form to take is Neoral, which is the modified form of Cyclosporine.