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AA Aplastic anemia

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  #1  
Old Tue Mar 10, 2015, 12:15 PM
prabhu N prabhu N is offline
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Need help

My dad affected by severe AA. His age is 60. Two weeks back he suffered by gum bleeding, we think that is dental problem but in two days he getting weaken. Then we consult one hemato doctor, they taken lot of test and they diagnosis of Aplastic Anemia. In the blood result platelet count; 4000 RBC; 1.35 WBC; 3.1 HEMOGLOBIN; 5.4 my dad admitted in hospital for 4 days and doctor suggest cyclosporin 300 mg daily, and for bleeding he give TRANOSTA 500 mg. After a week I decided to take blood test in that no improvement in platelet count. I don't have knowledge in Aplastic Anemia. Pls suggest me what type of treatment is good.
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  #2  
Old Wed Mar 11, 2015, 07:34 AM
rukalukavina rukalukavina is offline
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Sorry to hear Your father was diagnosed with AA, but don't worry; this treatment that His hematologist gave Him (Cyclosporine A) is a standard in patients with AA.
Keep in mind that this is a serious disease and it takes time for blood counts to go up, avoid:
  • hard work, exercise (few stretches will do, just to keep in shape)
  • stay away from sick people to avoid infections
  • he should sleep enough (if it's 10 hours a day, let it be)
  • follow doctor's advise

His doctor will make a decision if he thinks that a change or correction in therapy is needed.
CyA suppresses immune system T lymphocytes in WBC which are proven to be the cause of bone marrow hypoplasia, scarcity of mature stem cells from which the blood is produced in bones.
In plain words, autoimmune diseases (such as AA) cause Your immune system to attack itself, thinking that those cells are a foreign body.
Just be patient and take care.
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day.
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  #3  
Old Wed Mar 11, 2015, 09:22 AM
prabhu N prabhu N is offline
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Thank you very much for giving information. I'm very much scared for platelet count is only 4000, is there any way to increase platelet count temporarily.
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  #4  
Old Wed Mar 11, 2015, 09:43 AM
rukalukavina rukalukavina is offline
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You can't do much about platelets, but You can try juicing, i.e., drinking raw juice from beetroot and other fruits and vegetables which can increase blood counts slightly.
If You can, You should get a second opinion from a different hematologist just to check whether he should get a platelet transfusion.
You must understand that he is now in a very sensitive state.
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day.
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  #5  
Old Wed Mar 11, 2015, 10:36 AM
Hopeful Hopeful is offline
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prabhu

I am sorry to hear about your father's condition.

Are platelets and red blood cell transfusions available where you are? Your father needs them.

Also, is there a center that administers ATG in combination with cyclosporine? This is the gold standard for treatment, although a smaller percentage of people can respond to cyclosporine alone. As rukalukavina pointed out, it can take 2-3 months for cyclosporine to build up in his system to a level where it can start working.

If you have the option of transporting him to a center with experience in treating aplastic anemia, that would be the best option. Do it as quickly as possible!

One other question...
Did your father's condition appear suddenly or did you notice a gradual deterioration in his energy level and increase in his bruising/bleeding. If it happened suddenly, it could be something toxic that he consumed (or still is consuming). This is the easiest situation to reverse.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #6  
Old Wed Mar 11, 2015, 10:25 PM
prabhu N prabhu N is offline
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Thank you hopeful

I also heard about ATG treatment but I didn't have much knowledge in that. My doc slightly explain about ATG but not an clear explanation.

It appeared suddenly, but past five years he not consumed any toxic and also not working under any chemical factory. After enquiry all this things doctor decided that is autoimmune.
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  #7  
Old Wed Mar 11, 2015, 11:25 PM
Hopeful Hopeful is offline
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The AA&MDSIF is a great resource for learning about the disease and treatments. There are many helpful on-line videos from experts throughout the world.

Here is a link to their AA videos:

https://www.pathlms.com/aamdsif/categories/300/courses

This one called "Aplastic Anemia - Understanding the Basics" would be a good one to start with:

https://www.pathlms.com/aamdsif/courses/831

You will be an expert before you know it

Wishing you and your father well.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #8  
Old Wed Apr 1, 2015, 04:22 PM
Mike R Mike R is offline
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Sorry to hear about your dad. I to have had severe Aplastic Amemia since 1992 with similar counts. I had Atg and cyclosporine therapy. I basically recovered except for low platelet count. In 2000 I relapsed and went through same therapy again and have been fine since. It's a scary time but I'm proof that you can get better. Just never give up is the best advice I can give.
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  #9  
Old Thu Apr 2, 2015, 02:02 AM
Hopeful Hopeful is offline
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Hi Mike R,

It is encouraging that you have had such great results with ATG. Were you taking cyclosporine long term? How low did your platelets get before you tried the second round of ATG? Also, do you mind sharing you age?


Thanks!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #10  
Old Sun Apr 5, 2015, 09:56 AM
prayingrbc prayingrbc is offline
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HI Mike R,

I too am curious of your age. My dad i s 62 and going through SVAA. He too had ATG + cyclo. Currently 200 2x day but seems to be somewhat toxic overwhelming for his system still at that dose.

Also, wondering how long before your hgb and platelets began to show improvement. My father is at 4 months and so far only wbc improvement with 2-4 blood transfusions and 1-2 platelet transfusions weekly.

He also has had numerous infections and now is generally very weak but able to walk very short distances with a walker. (bed to bathroom, bed to chair, etc)

Any info would be appreciated.

Thank you.
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  #11  
Old Mon Apr 20, 2015, 10:24 AM
sues sues is offline
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I'm on day 17 of atg and cyclosporine treatment and have to say it has been hard. I have to go to Karmanos 3 times a week now and have blood done and I feel so much worse then I did before this treatment. I know it takes time, but this meds are so toxic. 53 year old female. Diagnosed 6 months ago. Have all low numbers, severe aa. Got rash, fever with atg, then got serum sickness and red bumps covered my body. They are beginning to fade. I now have leg and arm pain at night after recovering from hand wrist and knee pain. I am afraid of being toxic of all these poisons.
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