Possible AA relapse, 2yr remission post ATG

[BobbyJD]

Hi, long time follower but first post. 20yr old sister has AA. Diagnosed June 2010, found by chance. Never had any symptoms and never needed one transfusion except while receiving ATG.

Anyway, after ATG (9/2010) and Cyclo taper for 1yr+ counts rebounded very quickly to normal. Since Feb 2013 Platelets have been trending downward (120 in Feb, as of today 7/10/13 they are 70). Now these are still good numbers in the world of AA however its a negative trend and getting us worried. Doctor wants to start Cyclo once platelets hit 50. He also wants to do another bone marrow biopsy just to be sure there is no progression into something else. By the way he is a specialist in AA at NYU.

My question; Is she headed out of remission? Has anyone seen their Platelet count drop in similar fashion and if so what was the out come? Do you think cyclo should be started sooner?? *other counts are fine, not sure of the numbers but I know they are acceptable and not dropping like the platelets.

One reason for concern is when she was first dx, platelets were the first to go...thanks for your thoughts!

[Hopeful]

Hi BobbyJD,

Has the trend been established with more than two blood tests? Also, has your sister had any recent illnesses, surgery, or a pregnancy?

If things are trending down, I would ask for another BMB now. This is the only way to know what is really going on. I think the benefit of starting cyclosporine early is that your sister may get away with a lower dosage.

If it were me, I would want the BMB now and then if it showed changes, I would want to start the cyclosporine early (with the option to increase the dosage later) vs at full dosage while in panic-mode later.

Hope things improve for her!

[BobbyJD]

Hi hopeful, thank you for the reply. She takes weekly blood tests so we have been monitoring the downward trend for awhile. Other counts were bouncing around a bit, but I believe are okay for now.

She refused to do BMB couple weeks ago when Dr offered so he sympathized and said lets see how the counts are in a couple more weeks. But looks as if she will be having it done by end of month. Depending on the next two tests.

Anyone out there have any luck with just using Cyclosporine to help counts rebound?

Her initial response to immunosuppression went very well (besides serum sickness) so I'm surprised she is headed out of remission so soon. Dr said this treatment should of lasted several years.

[KMac]

Dear BobbyJD,

I am sorry to hear about your sister's declining counts 2 years post-ATG. I believe I can identify with what she is going through. I am about 18 months post-ATG for SAA myself, and have also been experiencing declining counts as per below:

Highest Post-ATG Latest (from mid-June)
============= ================
ANC 1750 650
Hgb 13.8 11.9
PLT 210 108

...I am still on my full dose of cyclosporine though (500 Mg/day). My doctor and I discuss at what point we'd consider another round of ATG (or something else). Nothing definite decided yet though. I am anxious for my next appointment with him, and bloodwork, next Friday.

I was really hoping to get an appointment at NIH for further treatment advice, but after reviewing my records, Dr. Young decided I was not a candidate for an office visit at this point because I've responded to treatment (I certainly am much better than I was pre-ATG, by leaps and bounds, even with these declines). I was told that perhaps I could be seen at NIH if I relapsed (but like you, I am wondering what 'relapse' means - the line seems fuzzy, other than if we need blood, then we have certainly relapsed at that point).

Are you familiar with AAMDS? They are a great support organization, and I'm really looking forward to a webinar they are holding July 20th. You and your sister can register as well at this URL if you'd like:

https://live.blueskybroadcast.com/bs...=6849&CAT=6849

...the topics look to be very relevant to our current situations with AA, and there will be experts to answer our questions remotely. I am hoping this will be kind of a replacement for the NIH appointment I wasn't able to get.

Feel free to email me kevin_mcnamar@yahoo.com if you have any trouble with that link, or any questions.

In the meantime, I feel pretty good, work, get exercise, just took a nice trip with family. Try to live my life. My appetite is good, and I am off to dinner. Plan to hike up a mountain tomorrow with my son.

....I sure hope these declining counts both your sister and I are experiencing are temporary and will resolve on their own.

Oh one more thing, I see you are in NJ. I live in CO but am from NJ. There is an AAMDS support group there that my parents go to, I could give you the info if you'd like. In that group, I believe there is a person who went to the brink of needing transfusions about 2 years post-ATG with her quitting of cyclosporine. NIH offered her another round of ATG, she decided to wait it out, and her counts climbed back on their own, now 5 years post-ATG they are about normal.

[BobbyJD]

Hi Kmac,

Sorry to hear about your dropping counts as well. Have you been on the full dose of Cyclo since ATG? No taper at all?

It seems like NIH only accepts the worst of the worst, but honestly if your doctor is well educated on how to treat you and has some experience in dealing with AA patients I think you will be fine in CO. The NIH does a lot of testing with other drugs but overall I believe ATG is still their go to option. From what I have read people who go their usually don't have luck with any standard treatment first. So, it is a good sign you did initially respond to treatment and your counts are still acceptable.

I'm very familiar with AAMDS.org, did some fundraising and I often view the webinar's they have available. I have viewed some of the webinars in the past as well as gone to one conference here in NJ. They are very informative and a lot more inspirational than you would think.

Overall my sister like you, looks and feels fine. Except for the emotional toll this takes obviously. Hopefully things get better for the both of us. I would be interested in hearing about where that support group is and that story you told is certainly inspiring for the both of us.

Thanks

[KMac]

High BobbyJD,

Here is the contact information for the coordinator of the AAMDS support group. They meet monthly in or near New Brunswick, NJ.

Linda Rothstein
T: 732.605.0049
Email: rothstein-sosnick@live.com

I agree that is an inspiring story about the woman whose counts recovered on their own.

I'm confident I have excellent care in Colorado. My doctor is great on all levels, as is the whole hematological team at the hospital here (CBCI-PSL), and I believe they saved my life.

They are supportive of my interest to get a 2nd opinion from a research institution. CBCI-PSL is a top notch treatment center for AA, but I think there's something to be said about consulting a research center at times, especially since AA is so rare, and new developments are on the horizon. But anyway, I feel secure that option will be open if my counts drop more, which I sure hope they don't!

I felt great during and after climbing the mountain with my son today, so I suspect my red blood is holding in.

I haven't started a cyclo taper at all in the past 17 months, because I responded so slowly to ATG. My counts didn't rise much until months 7-10. My doctor planned to start a taper at month 11, then then they started slipping some again.

Best wishes to you and your sister in fighting this. It is great that you are on here asking questions on her behalf, and I really appreciate that you help us by volunteering at AAMDS.

Kevin

[Hopeful]

Originally Posted by BobbyJD

Anyone out there have any luck with just using Cyclosporine to help counts rebound?

I've heard of a number of people on this forum and other places that have rebounded by restarting cyclosporine alone. The issue then becomes deciding whether they can taper again or whether they should stay on cyclosporine for the long term.

[BobbyJD]

Kmac, thanks for the contact info, I live very close to New Brunswick so I will think about reaching out to Linda in the near future.

Hang in there guys and thanks for the responses! Sister has BMB scheduled next week, I will respond back with results then.

[KMac]

You're welcome BobbyJD.

As per Hopeful's comment, I agree that cyclosporine taper question is a hard one - i.e. when/if to taper. I know of someone 9 years post-ATG that starts to relapse every time they try to quit the cyclosporine, and he gets better as soon as they put him back on it. He works full-time and is a volunteer fire-fighter, so he does very well, and it seems best he just keep taking the cyclosporine.

I'd sure like to try and taper mine, but another part of me is nervous to.

I hope your sister's BMB shows good results, and that her platelet counts start to rise.

[BobbyJD]

Hey guys, just wanted to update you. BMB came back, no progression or mutation! It is still AA with small PNH clone and chromosomes are normal. So that is very good news, counts are holding steady at what I mentioned earlier. Currently just watching and waiting, no meds yet. She feels and looks just fine, so hopefully counts begin to rise a bit on their own.