Avg amount of time Cyclosporine took to begin seeing a response.

[chrplunk]

Hi. I have a very important question. Please any info you can give us would be so helpful.

We need to know, please, the average amount of time it took for people with MDS who are on Cyclosporine to respond? My mom has been on the drug now for approx three to four months with no changes in counts. I have seen articles stating it does take a bit, but we don't know whether to now try either a different immunosuppresant (low dose Campath for instance), a hypomethylating agent, or stay the course.

If you have any experience with this or knowledge, please respond. How long did it take before counts started going up?

Thank you so much!

[Sally C]

Hi Chris,
My husband started out with Trisomy 8 but all 3 lines were low. He received Campath at NIH in April 2009 and it got rid of the Trisomy 8 which is good but didn't do much for his transfusion dependency. He also tried Cyclosporine for about 9 months but had no response. He went into a new clinical trial at NIH in March of 2011 of Eltrombopag (Promacta) which you can read about under "Clinical Trials" and it has resulted in his becoming transfusion independent with his platelets as well as his red cells.
By the way, I'm a Charlotte native.
I hope this helps!
God Bless,
Sally

[chrplunk]

Thanks for replying!

[Hopeful]

Hi chrplunk,

Cyclosporine alone is not a typical immune suppressant regimen. When used in combination with the more powerful ATG, it can still take 6-9 months+ to see a response.

A Trisomy 8 mutation is thought to be indicative of an immune attack. So, I would be hesitant to try a hypomethylating agent before one of the other alternatives.

[chrplunk]

Originally Posted by Hopeful

Hi chrplunk,

Cyclosporine alone is not a typical immune suppressant regimen. When used in combination with the more powerful ATG, it can still take 6-9 months+ to see a response.

A Trisomy 8 mutation is thought to be indicative of an immune attack. So, I would be hesitant to try a hypomethylating agent before one of the other alternatives.

Interesting. I am unsure as to why there is no ATG but I suspect age is a factor here. I will find out though. Thanks for responding, it means so much to our family.
Chris

[gina66]

I have PRCA due to Parvo virus. I get blood transfusion every 2 weeks. I had IVIG treatment. I tried Cyclosporine the first time in July for 300 mg/day. After 4 wks I had toxicity as the worst side effects manifested by all my muscles cramping including my heart muscle and I was in pain due to that. We stopped the med. My doctors think it is still the med for me, so I started taking it again 3 weeks ago for lower dose, 100 mg/day. First 2 wks, I started having stiff neck that continues. 3rd week, I started feeling my muscles are shaking or trembling and I had mouth sores that went away. I feel nauseated this wk and dizzy. I do not know that is the med for me. It seems like it builds up in my system only and the only way to stop building up in my system is to stop it. I do not think ATG should be given to me because I have no problem with my WBC. I think I should just continue the IVIG therapy to boost my immune system and stop Parvo virus to re-occur.

[triumphe64]

Dr. Maciejewski recommended I take magnesium oxide for the shaking. It helps. Check with your doctor.

It took me three years to find a doctor(s) who understood PRCA. Before that, I was going up and down just as you are, and my doctor had little experience and was somewhat clueless because PRCA is so VERY rare. Once you find the right doctor everything will suddenly start falling into place.

In addition to the three doctors I have recommended to you, you might contact this guy in St. Louis. It may be closer to you.

http://hematology.wustl.edu/faculty/...aubertBio.html

I got his name from the www.AAMDS.org website. You might call them and talk to the patient educator for further help. She was the person who helped me the most. http://www.aamds.org/support-and-com...tient-educator

[Lbrown]

I didn't react well to cyclosporine either, pretty much same symptoms as you. I was diagnosed with idiopathic PRCA. I had ATG but it didn't work. Before that I tried IVIG which decimated my red cell count. Does the IVIG work for you?

Deb