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Old Sat Dec 17, 2016, 10:56 PM
Ellen McDonough Ellen McDonough is offline
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Location: United States,Denver,Colorado
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Questions about long term weaned off Cyclosporine

I had weaned off of Cyclosporine 12/2016 for my severe aplastic anemia.
It has taken a good year or more.

I have had increasing fatigue and am now so exhausted most days off from work and weekends I sleep 15 hours a night and still feel fatigued.
It feels like my body is using everything to make cells or something.
Lately climbing stairs and hiking at altitude are causing the same feeling I had before I was diagnosed with SAA last time- dizziness and shortness of breath and heart racing.It has brought to my attention that I have been making a few mistakes on my job recently, which I never have made before.
I haven't had a bone marrow biopsy since 2011.
I was diagnosed in 2009 with SAA. Got horse ATG and Cyclosporine .Have been pretty stable for the past few years with peripheral counts.
I have been neutropenic since April-2017 and my LDH is rising.Last LDH was 245.
My local hematologist is good but I am his only experience with aplastic anemia. My last counts on 10/20 WBC-3.2, Hbg-13.2, Hct-39, platelets -159 , neutrophils-1.2. Neutrophils have been running 1.0-1.2.So below normal but not dangerously low. But still I had been running 1.8-2.0 all along for years before going off Cyclosporin .
Could the SAA be returning after all these years of being at bay?
I'm wondering if it's time for another BM biopsy?

Thanks,
Ellen
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.

Last edited by Ellen McDonough : Fri Nov 3, 2017 at 06:51 AM.
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Old Sun Dec 18, 2016, 01:17 AM
Hopeful Hopeful is offline
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Hi Ellen,

Congratulations on your good response!

I recommend monthly CBCs for the first 6-9 months after stopping cyclosporine. If you relapse, it can happen as a sharp decline in counts, or it can be more gradual. If you are not checking your blood levels regularly and your counts are declining gradually, it will be difficult to notice the trend. If you are one of the people who are cyclosporine dependent, you want to catch a relapse early, so as to hopefully avoid going through ATG again.

You don't really need a BMB or further testing if your CBC is normal. The doctor's will investigate further if something looks suspicious in the blood work.

I hope you are one of the lucky ones and that you have a durable response!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Wed Dec 21, 2016, 12:53 AM
Ellen McDonough Ellen McDonough is offline
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Hello Hopeful,
Thanks so much for your response.
Are there any other screening test needed? I remember reading a few years ago that we should be screen yearly for PNH with flow cytometry,although I really haven't had this done in several years.
I feel so much more tired since weaning .That was why I was wondering about doing a BMB again. In 2015 I walked in Spain a big portion of the Camino in gratitude that I had my life back.Now I am so darn tired I don't think I could. I sleep on my weekends off from work like 15-18 hours straight.
I just wonder why.It feels like all my energy is going to make blood cells.
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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Old Fri Dec 23, 2016, 01:05 AM
Hopeful Hopeful is offline
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Hi Ellen,

What was you tapering schedule for cyclosporine? How long have you been off of the drug?

I remember feeling energized while tapering. So, being extremely tired is concerning. How often do you get a CBC? What were your numbers last time?

I also haven't had my PNH rechecked regularly, but have heard that it should be monitored yearly. Given your symptoms, I would discuss getting your LDH and PNH rechecked with your doctor. You may also want to check your iron levels, if you haven't recently.

My doctors don't think it is necessary to do a BMB unless something has changed with my counts.

Hope this helps!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Thu Dec 29, 2016, 05:28 PM
Ellen McDonough Ellen McDonough is offline
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Thank you for that info.
I had been weaning for over a year very slowly off Cyclosporin. I was getting CBC's every 3 months or so. They had been stable. WBC'S 4.0, ANC 1.9, Hgb-13.9, RBC's 3.70 .Platelets 156.So pretty well normal. That was right around the range of the last one. I think that was done in the beginning of November or late October.
I stopped Cyclosporin December 15,2016.
Just had my labs done a few days ago and have not heard results yet which is a good sign ...so they must not be bad or I would have heard something.
I have also had chronic sinus infections again this fall since weaning Cyclosporin which I had before aplastic anemia showed itself. Interesting....
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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