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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sun Apr 27, 2014, 11:24 PM
ussoccer004 ussoccer004 is offline
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neutropenia and pnh

I was wondering if there are others that are suffering from neutropenia .9-.5 ranges and how do you deal with the neutropenia? Do your doctors put you on neupogen? Is ATG/ Cycle to increase neutrophils and white counts? Also what about IVIG?
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Old Wed Apr 30, 2014, 08:37 AM
Cheryl C Cheryl C is offline
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I've had chronic neutropenia for many years now, and my specialist thinks I've had MDS for about 4-5 years. My neutrophils are normally well below 0.9. The last 2 months have been 0.4 and 0.3 respectively.

I live a fairly normal, active life and continue to eat lots of fresh fruit and vegies (well washed). If I have the slightest hint of a sore throat I take a 5000 mg Echinacea capsule. At the hint of a UTI I take a 10,000 mg cranberry capsule. Coconut oil pulling is good for mouth ulcers (see http://www.coconutresearchcenter.org...%20pulling.htm). I continue natural remedies every few hours until symptoms go. They are usually effective, but not 100% of the time. I did have to take 2 consecutive courses of antibiotics recently for a UTI. (They were the first antibiotics for 12 months or so).

I avoid products containing cane sugar products and maple syrup, and only use stevia or pure unheated honey for sweetening. I avoid dairy products.

As you can see below I have a 4-weekly infusion of gamma globulin (Intragam) for hypogammaglobulinaemia. While it doesn't increase my neuts or WCC I think it does help to keep my immune system in better condition.

Hope this helps you!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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Old Mon May 5, 2014, 11:35 PM
Kathy S Kathy S is offline
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Cheryl, I find your process interesting. My husband and I just spent last week with a 'Naturalpathic' doctor and all of the things you are doing is just what his protocal of elimination from the diet is for any condition to allow your body heal itself.. No dairy products, sugars, white flour, starches, meat, sodas, etc.. He recommends a raw diet of mostly fruits (grapes) for detoxing for 20 days along with herbs. We did a week of classes with him and what he says makes sense as to reason of 'dis-ease' in the body (acidosis). Since there are no options in the 'medical field' we were not left with any other options. My best to you and it is encouraging to hear you are maintaining your well being with a good diet. I hope that you continue to do well.

Sincerely Kathy
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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Old Fri Dec 12, 2014, 08:03 PM
Susan Susan is offline
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Kathy, I have PNH and have neutropenia. My original dx was AA and PNH. The AA went away, marrow became normal and counts went up. My ANC had stayed around 1.2 occasionally dipping to lowest 0.6. Plts not too low.
Recently ANC fell to 300, then 200. Had BMB today, retics just fell quite a bit. Expecting to be told I have AA, hoping not MDS or worse. I thought the low ANC could be temporary & caused by a recent mild illness or the antibiotics. But I'm healthy again and no improvement.

Treatment of neutropenia depends on the cause and how low it goes. The correct diagnosis is extremely important. At or under 200 is severe and should be treated. It's actually better to treat it before it goes that low.

For Aplastic Anemia, unless you're younger and choose transplant ATG is the first line treatment. I'm actually very upset right now because I've seen a new Hem the last couple od years and she hasn't been checking the retics.
Response to ATG is higher if the retics, ANC, and absolute lymphocytes are higher. If I had known my retics were trending down I would have had a good window for ATG treatment. Now I have to wait and watch hoping these will go up but risk infections. But if I wait and these #s fall further my chance of response will go down further.

So be sure your hem is checking all these counts regularly! It's very strange how quickly the marrow can change.

Never heard of IVIG, depends on diagnosis. The wrong treatment can be harmful. Best to ask a very experienced bone marrow failure expert.
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AA/PNH Dx 1998, mod plts, new ANC crash & blasts 4.4. Searching for new additional Dx. 1 clot 2013. Prednisone 2001 to 2009, Neupogen, Warfarin, Soliris
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  #5  
Old Sun Dec 14, 2014, 07:02 PM
Cheryl C Cheryl C is offline
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Kathy - thank you! It's encouraging for me to know that what I'm doing is supported by naturopathy. If you need any good recipe books full of simple, healthful and delicious recipes, I can recommend some.

I hope your new regime gives you and your husband a real boost! Please let us know how you are getting on. My regime hasn't cured me, but I'm sure it helps me to stay well.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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