possible relapse

[3blankets]

Hi! I have been a member for a while but this is my first post. I was diagnosed with AA in Sept of 2008. I had a white count of 1.8, platelets were 18,000 and hematocrit was 15. I had a lot of the same symptoms that many of you have experienced, feeling tired, bruising without knowing how, pale skin. I also had a pulsating sound in my ears whenever I exerted myself.

After the first bone marrow biopsy the doctor thought I might have myelodysplastic syndrome. But after a lot of blood transfusions and waiting, and not having a matched sibling donor, they did another biopsy and discovered it was Aplastic Anemia. I had ATG and was on Cyclosporine for around 9 months. I had a great response, at the highest I had 109 for platelets, a white count of 3.0 and hematocrit of 36. That was around 6 months ago. Then the counts started to drop..now I have 30h/2.3wc/50,000p. I was wondering if anyone else has had this happen so soon. It's been a little over two years. My doctor is going to do another biopsy in the spring to see what is going on. I am just really anxious to see what the next step is going to be. Any advice would be appreciated. Thanks

[Ryan Jay]

Did they cut you off at nine months? Or did they taper you down at all?

[3blankets]

They cut me down kind of slowly, maybe around 3 months taper. I was originally taking 2 pills a day, but that was too much I guess, then I was taking a pill a day for around 5-6 months and then a pill every other day..so on. I was wondering if they will put me back on cyclosporine to see if that helps? I guess I really can't be sure until I have the next biopsy..but I am just anxious about it and was hoping most of this was behind me!

[Lisa V]

Erin, did the drop in counts coincide with the taper? That seems to be a fairly common scenario. The latest findings seem to suggest that about a third of all patients will relapse when the cyclosporine is tapered, and may have to remain on it indefinitely.

Resuming it now may help. If it doesn't, you may have to repeat the ATG and continue taking cyclosporine. At the very least, I'd suggest staying on it until all counts return to normal before attempting another taper, and then doing it very very slowly.

[KimO]

My daughter relapsed last September after being off cyclosporine for a year (7 months on cyclosporine after ATG and 9 month taper). Her counts have now returned to normal and the plan right now is to hold the current dose of cyclosporine (so as not to rock the boat) until she graduates from college this spring. I think restarting the cyclosporine sounds like a good first step in your case.

[3blankets]

Thanks for you responses. I would say that I was off the cyclosporine for about a year when the counts started to go down. I will see what the doctor says at my next appointment in March.

[3blankets]

Originally Posted by KimO

My daughter relapsed last September after being off cyclosporine for a year (7 months on cyclosporine after ATG and 9 month taper). Her counts have now returned to normal and the plan right now is to hold the current dose of cyclosporine (so as not to rock the boat) until she graduates from college this spring. I think restarting the cyclosporine sounds like a good first step in your case.

Do you remember when they decided to restart the cyclosporine? I mean, how low did they let her counts go before they restarted it? I have been on the cyclosporine now for a month, and my counts have not dropped but they haven't gotten better either. I am thankful they have not gotten any worse, but my hematocrit is 26. I would like to see an improvement! Thanks.

[KimO]

I'm a numbers person so I thought posting the relative numbers over the course of her relapse and recovery might be helpful. The first set of results is her last "normal" draw the end of June last year. Then the end of August before she returned to school she had a test that showed a significant drop in platelets -- 149 to 92. The docs wanted to make sure it was a trend so they did another test a week later and platelets were down again -- from 92 to 75. She restarted cyclosporine a couple of days after that but platelets continued to drop and then stabilize -- 47, 43, 41 -- over the next three weeks. The following week, approximately 4 weeks after restarting the cyclosporine, we saw the first increase. I've included information on all lines but platelets seem to be the best predictor of where things are going for Shauna. Reds continued to drift down even after platelets increased because of the amount of time that they last in the system. They were the last to increase. Also, note that as her numbers turned around the neutrophils became a much higher percentage of the total white count. In fact, the ratio pretty much flip-flopped from approximately 60-35 lymphs/neuts to the other way around. Hope this helps.

Date -- 6/28 -- 8/26 -- 9/1 -- 9/8 -- 9/15 -- 9/22 -- 9/30 -- 10/7
Hgb -- 12.6 -- 12.1 -- 11 -- 10.7 --11.1 -- 10.0 -- 10.0 -- 10.0
Hct -- 36.7 -- 35.1 - 31 -- 31 -- 31 -- 31 -- 29 -- 28
Plt -- 149 -- 92 -- 75 -- 47 -- 43 -- 41 -- 54 -- 79
WBC - 4 -- 3.1 -- 3 -- 2.9 -- 3.2 -- 2.8 -- 3.1 -- 3
Neut -- 2.12 - 1.17 -- 1 -- .6 -- .9 -- .6 -- .9 -- .8


Date -- 10/13--10/21-- 10/28 -- 11/4 -- 11/10 -- 12/2-- 12/16
Hgb -- 10.1 -- 9.5 -- 9.7 -- 9.7 -- 10.2 -- 11.4 -- 11.9
Hct -- 30.0 -- 28.0 -- 29.0 -- 29 -- 30.0 -- 35 -- 35
Plt -- 80 -- 123-- 137 -- 173 -- 196 -- 164 -- 150
WBC - 2.2 -- 4.1 -- 4.5 -- 4.1 -- 3.6 -- 4.4 -- 5.8
Neut -- .9 - - 1.27 -- 2.08 -- 2.2 -- 1.85 -- 1.89 -- 3.61

[Neil Cuadra]

KimO,

Here's a forum tip. If you put [code] and [/code] tags around your numbers they will display in a monospaced font and you can line then up better!

Date --  6/28 --  8/26 --   9/1 --   9/8 --  9/15 --  9/22 --  9/30 --  10/7
Hgb  --  12.6 --  12.1 --    11 --  10.7 --  11.1 --  10.0 --  10.0 --  10.0
Hct  --  36.7 --  35.1 --    31 --    31 --    31 --    31 --    29 --    28
Plt  --   149 --    92 --    75 --    47 --    43 --    41 --    54 --    79
WBC  --     4 --   3.1 --     3 --   2.9 --   3.2 --   2.8 --   3.1 --     3
Neut --  2.12 --  1.17 --     1 --    .6 --    .9 --    .6 --    .9 --    .8

Date -- 10/13 -- 10/21 -- 10/28 --  11/4 -- 11/10 --  12/2 -- 12/16
Hgb  --  10.1 --   9.5 --   9.7 --   9.7 --  10.2 --  11.4 --  11.9
Hct  --  30.0 --  28.0 --  29.0 --    29 --  30.0 --    35 --    35
Plt  --    80 --   123 --   137 --   173 --   196 --   164 --   150
WBC  --   2.2 --   4.1 --   4.5 --   4.1 --   3.6 --   4.4 --   5.8
Neut --    .9 --  1.27 --  2.08 --   2.2 --  1.85 --  1.89 --  3.61

[KimO]

Thanks Neil for the great tip!

[3blankets]

Thank you so much for posting those counts. It is great to see the improvement. I am very happy that your daughter is doing well.