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AA Aplastic anemia

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Old Sat Jan 6, 2018, 01:54 PM
-_- -_- is offline
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Location: America
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Infection and AA treatment

Hello, I've been lurking for a while and decided to make an account. My mom has AA and was in the hospital but got out recently. She has neutropenia and ended up with an infection and a swollen lymph node under her arm that is painful. They gave her antibiotics and a blood transfusion to clear it up, the lymph node is now decreasing in size and hurting less. This same issue has happened before about 8 months ago.

I have a lot of questions about this disease, she trusted me to research possible treatment because I was always good with figuring things out and the doctors are really unintelligent/don't seem to know much (but suggested AGT/cyclosporine). I am concerned about starting AGT/cyclosporine treatment because of the lingering infection. Decreasing the immune system at this point seems like a bad idea until this infection clears up. She may also have parasites, which we are testing for and the immune system keeps them in check. Also, if the transfusion was given and the immune system is strong/on high alert enough to kill her own white blood cells, it seems like there is a high chance for a graft vs host reaction unless it was irradiated. I was unaware she needed a transfusion until they gave it to her already, so I couldn't tell the doctor it needed to be irradiated.

I was looking at alternative medicine therapies as well but most of them either decrease or increase the immune system and I didnít want to start them until we know the immune system is either killing her blood cells or not. Also, I am concerned about the legitimacy of alternative medicine companies since they are not tested by the FDA and China sourced medicines can be contaminated with heavy metals.

Some background info: She has always had anemia, even when she was young but thatís just the way it was. She never got sick or anything, EVER. She lead a very healthy lifestyle and did not smoke or drink. She is multiracial mostly black, white, and Asian, with a B+ blood type. Recently about 3 years ago, she was diagnosed with severe AA but it only started affecting her about 1 year ago. She has a neurological issue that has never been resolved. She may have been exposed to pesticides and seizure medication. She threw up a couple of days after she was let out of the hospital.

Questions:
1. How do we know if the disease is caused by autoimmune issues or not? I asked them to test for lupus and that was negative, would that have shown if there is an autoimmune issue?

2. She has arthritis and has some swelling in her feet which points to an autoimmune issue. If it is, should she not take supplements that boost the immune system, such as shark liver oil, eccinacea, etc? Is there a specific test for autoimmune issues in general?

3. Has anyone here had a transfusion reaction? If they did, what did they do to treat it? Iím asking just to be sure, she doesnít have a reaction at the moment.

4. Is it ok to start AGT/cyclosporine with an infection or parasite infestation? It doesnít seem like it would be.

5. If you use Chinese herbs what do you use and what website and manufacturer do you get them from?

6. Are their any medications anyone takes that do not destroy the immune system completely like cyclosporine. She had a neupogen shot but I am concerned it may trigger AML so I don't want them to keep giving her those.

Thank you for your help, you are all literally lifesavers and I appreciate it!!
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Old Mon Jan 29, 2018, 10:17 AM
Hopeful Hopeful is offline
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Location: California, USA
Posts: 683
Hi,

Sorry that you didn't get a response to your post.

Are you still on this forum?
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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 Mon Jan 29, 2018, 12:57 PM
KMac KMac is offline
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Location: Golden, Colorado
Posts: 103
Answers to your AA questions, for your Mom

Hello,

I'm sorry your mother is going through this. Your questions are intelligent and well-thought out. Your mom is fortunate to have you advocating for her.

In short, I don't have answers to your questions. I strongly believe that what your mother needs most it to be treated by a team of Aplastic Anemia specialists at a Center of Excellence. I identify with your frustration that the doctors treating your mother appear to be unqualified. I'm convinced this is a common situation unfortunately, as aplastic anemia is so rare. One of America's foremost Aplastic Anemia doctors urges patients to get seen quickly by qualified hematologists, as per link below:

https://www.youtube.com/watch?v=02rvFOFYOVw

I began my treatment in a hospital where the doctors were not familiar with aplastic anemia, but switched to a hospital where there is deep expertise in treating this disorder (PSL/CBCI in Denver, CO). Six years post treatment, I have recovered quite well. I feel great, my counts are good and stable, I have my life back.

And treatments continue to improve, as per link below. There is hope for your Mom, but I feel strongly your questions need to be answered, and she need to be seen, by qualified experts.

https://www.youtube.com/watch?v=ECQRfjDWRvE

Best of luck to you both,
Kevin
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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