Elaine Posted November 5, 2004 Share Posted November 5, 2004 What do you know about the pain from hypertrophic Pulmonary Osteoarthropy. I have minor arthralgias from it, which is no big deal though sometimes causes me to be unable to walk well. But the real pain is this burning pain--caused by what I am not sure--except that it is HPOA related.. It is this buring pain that led me to the Drs initially. At first the pain was very sporadic- though every night, it usually disappeared within minutes of awakening. Maybe every 7-10 days it would last for 8 hours or so. They tried Nuerogin(SP) but that didn't really work. Then it seemed to go away for ab out three months. Now it is back and is unrelenting--though goes in waves of severity. I would have to say that for the past six weeks it has went from being present 20 per cent of the day and night to now 90 per cent of the day and night--and seems to be throughout my body including my skull. I did try to get my HMO to approve debulking as a study out of Japan found that successful. But, no.... What would you advise me if I was your patient. Also, is it common that Drs and even oncs not know much about this paraneoplastic condition? elaine Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted November 5, 2004 Share Posted November 5, 2004 Elaine, I'm not Dr. Joe..........just wanted to let you know that I hate it that you are having trouble with this still. Have you tried Prednisone? When Dad was having trouble with this they put him on 20mg Prednisone daily for about a month. They then tapered it off. It did wonders for Dad. His legs, knees and ankles were swelled to twice their normal size. Also, after getting chemo, those symptoms went away completely and have not returned. Hope you get some help, dear. Angie Quote Link to comment Share on other sites More sharing options...
Elaine Posted November 5, 2004 Author Share Posted November 5, 2004 Angie I dont have swelling--well, intermittently I do. It's this burning pain. I guess not all people with HPOA present the same way or with the same symptoms, from what I understand, and I dont' know why. But I will ask about steroids. love and thanks elaine Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 5, 2004 Share Posted November 5, 2004 Elaine,sorry your having so much pain and discomfort.Hope you find a way to get rid of it soon. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted November 5, 2004 Share Posted November 5, 2004 Elaine, I am so sorry you are having this miserable pain along with all your other challenges you are facing right now. My prayers continue, and continue, and continue. I'm hopeful that Dr. Joe will be along soon to help you. All my love, Peggy Quote Link to comment Share on other sites More sharing options...
Elaine Posted November 5, 2004 Author Share Posted November 5, 2004 I have another phone call in, this time to two Drs. The only thing that is helping me cope is to keep working, working and working, using the tool I still have, which is my brain--the fingers are cooperating as well as can be expected. The articel WILL get written, whether it sees the light of print, I can't be sure. It depends on the outcome of the ongoing federal litigation, from what my contact implies. elaine Quote Link to comment Share on other sites More sharing options...
Elaine Posted November 6, 2004 Author Share Posted November 6, 2004 Well, they gave me a MAMA sized dose of nuerontin, which seems to have worked! But I can already tell its effects are fading, 10 hours before the next dose is due, but it such a relief, to have some of the despair lifted this morning! I am going to try adding something to tackle the arthralgia and hope to be able to walk better today. The down side is that with that horrible pain gone, I am noticing some other troubling chest pain--it was there for the past couple days, but the other pain was just so overwhelming that I could have cared less about any other thing in the world except stopping it. Dr. Joe, I am still curious to know what you think and know about this condition I have. My love to all of you who have expressed your concern. I am trying to figure out why I am having such trouble communicating with this new Dr. I have. My old PCP office at least was better at communication and making sure I had meds--until the end when they insisted I be seen (which they had every right to insist, I think--no problem there--I just didn't want to be see him and be subjected to more guilt trips.) ADDED: Ok the pain IS coming back, and I don't know if I should just take another pill or not. She only has me taking one a day--at night. Is it dangerous to just up my dose this qucikly? Quote Link to comment Share on other sites More sharing options...
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