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Old Sat Mar 31, 2012, 09:16 AM
Lou K Lou K is offline
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Join Date: Oct 2011
Location: Johns Island, SC
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Miserable on Danazol

Help! I started Danazol for the Telomere Protocol December 29 and have been in ill health since. I have been in the hospital with PCP pneumonia, two blood transfusions, dizzyness ( well I am a blonde that could answer that symptom), developed sharp pains in my back upper and lower and cramps in my legs. Doctor has diagnosed the back pain as plurisy of the lung. Definitely Danazol has not made me feel better. My CBCs have been normal for me so maybe that is a plus. Wondering if another females are struggling with this drug or if any one has had the issues similar to what I have had. Just want my feeling good life back!
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Old Sun Apr 1, 2012, 05:24 PM
Robi1Knobi Robi1Knobi is offline
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Location: Austin, Texas USA
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Hi Lou

Hi Lou, I am on the protocol too, but not having the same issues you are. I wonder if your doctor knows that having this telemere problem could make you prone to pulmonary fibrosis? Do you have pulmonary fibrosis or liver cirrhosis? I don't remember what you probably told me previously (darn AA, can't remember anything...). That could be related to the major problems you are having. I'm sorry you are having a sucky time...being sick stinks big time. I take Juice Plus, that keeps me healthy. I also use my Vitamix often, so if I don't feel like cooking, I put raw fruits & veggies in my blender and drink it! If you haven't done so already, you might need to look into supplements like it so you stay out of the hospital. I try to avoid seeing any more doctors than I NEED to ). Good luck, hope you feel much better soon.
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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Old Sun Apr 1, 2012, 05:42 PM
Robi1Knobi Robi1Knobi is offline
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I read your previous posting on the Danazol thread

Hi Lou, I just re-read your previous post on the thread and you are the one most like me, both of our fathers passed away (. You and I both have pulmonary fibrosis too. I hope that's not why your lungs are so bad off. I was looking at the research Dr. christina Garcia is doing, she'd doing one that involves NAC to help lung function. I am taking 600 mg three times a day, and I feel like its helping. Hope you can try it too, you need some hope...hugs, Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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Old Wed May 9, 2012, 07:07 AM
Lou K Lou K is offline
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NAC a must

Linda I too am taking NAC as prescribed by my doctors at Mayo in Rochester MN. I was (am) a patient for the past 5 years and my Pulmonary Doc highly recommends it. I believe it does help my lungs too. Good Health to you.
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Old Wed Jan 28, 2015, 03:39 PM
Robi1Knobi Robi1Knobi is offline
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How are you?

Hi Lou, just wanted to check in with you & see how you're doing? I'm back on Danazol, alternating 100 mg with 150 mg everyday. I also cut down on the NAC from 600mg TID (3xday) to twice a day because my acupuncturist said the TID was making my kidneys/liver work too hard & I def don't want to do anything to make liver cirrhosis pop up. The pulmonary fibrosis was exacerbated last year by me inhaling construction dust for 5 mos, I was hospitalized, & am on SS disability now, needing oxygen at night & when working out. I'm happy & as healthy as one can be though, was wondering how you are & wanted to check up on you . Drop me a line & if your on Facebook, I am too! Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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