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Post by IPH NET on Mar 24, 2011 18:04:41 GMT -6
I have recieved messages on the Facebook page and in e-mails from people who have been diagnosed with IPH over 35 or have a loved one diagnosed. Any information that you could find on this would be appreciated.
Regards,
IPH NET
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Post by charles on Jul 12, 2014 18:48:40 GMT -6
I was diagnosed with IPH in March this year from an open lung biopsy. I am a 63 year old male. My pulmonolgist has no experience with this condition but is willing to try various tests for Celiac disease and milk allergy to look for a cause. She say I am a very rare case, meaning not much experience anywhere to help me. I'm scouring the internet for help.
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Post by IPH NET on Jul 24, 2014 18:26:00 GMT -6
Charles,
Welcome to the forum. The open lung biopsy is the "gold standard" in diagnosing IPH. It is also wise to insure that there are no components of Caeliac disease present, as these may mimic IPH. Your Pulmonologist is honest with you in saying she is not experienced, as IPH presents in approx 1 in a million. There are adults on this board and on the internet that have been diagnosed with IPH. Just a shout out to the others on this board, please welcome Charles and provide any assistance you may have. We also have an active social media presence, with at least 3 Facebook pages dedicated to IPH. If you have any problems negotiating the board please message me.
Regards,
IPH-NET
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Post by charles on Sept 19, 2014 20:12:31 GMT -6
Promising update. I found a doctor who has run run me through tests and analysis more than I could ever imagine. Check, mold exposure, auto immune,kidney disease, pulmonary hypertension, food and so many allergies. Had my biopsy slides sent to other for analysis. They indicate that I have blood in my lungs but am not presenting with big bleeds. It seems to have a slow periodic growth with me noticing less lung capability and a few times of blood spotting when I cough. So he put me on 48 mg/day Methylprednisolone and in two weeks the CAT scan shows most interstitial lung disease has been resolved!!!!!! He did not expect that and as me was very happily surprised!! Now we are tapering back the MP and I might need a maintenance dose and it may come back fully.....but I am so happy with the result so far.
I hope this helps others.
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Post by IPH NET on Nov 22, 2014 10:16:56 GMT -6
Great to hear! I hope all is well for you.
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