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Posts (34)

Tue, Jan 1 11:28am · Idiopathic Pulmonary Fibrosis in Lung Health

Thanks for the reminder. I had ordered the Breathe Easy a while ago when someone mentioned it on this site. I will have him try it.

Tue, Jan 1 11:15am · Idiopathic Pulmonary Fibrosis in Lung Health

He has not had a cold; and, yes and no about the doctor. I told him in the past about the hoarseness being so bad at times, not only myself, but others are having issues understanding him. He will be seeing his doctor this month and I will mention it again. In the past, when I mentioned it, he sent him to the ENT doctor to determine if there were any nodules which may be affecting the hoarseness. It was determined by the ENT that it was his fibrosis. Perhaps, it is time for another XRay.

Dec 31, 2018 · Idiopathic Pulmonary Fibrosis in Lung Health

I am curious about the hoarseness my husband is having. It seems to be getting worse and at times, it is difficult for me to understand him when he speaks. I am wondering if others with this disease are having the same issues; and, if so, what they are doing if anything about it.

Nov 18, 2018 · Muscle and Joint pain in Bones, Joints & Muscles

Thanks for your reply. The referral department for Flagler Hospital in Palm Coast who was getting the appointment for me called me to tell me there was not a Rheumatology Department at Mayo. I must admit I was shocked to hear this and had planned to call them directly just to satisfy my curiosity. I have decided that I will take the prednisone to get some relief from the pain. Thanks again. Fran

Nov 17, 2018 · Muscle and Joint pain in Bones, Joints & Muscles

I was referred to Mayo in Jacksonville by my primary doctor because of several diagnoses with my muscle and joint pain. My primary doctor thinks I have Polymyalgia Rheumatica and apparently there is not a test to confirm it. I was surprised to learn that Mayo in Jacksonville did not have a Rheumatology department to refer me to. They are now checking in Gainesville where there is a teaching hospital I believe. I am not sure about what kind of facility is there. I did try treatment for fibromylgia thinking it may be that and it did not work . I understant with Polymyalgia, prednisone is the only thing that works. I do know when I was on Prednisone, I had less pain. I was only on it for a week at a time. From what I read about the disease, some people have to be on a small dosage for a long period of time, i.e., a year or more.

Nov 2, 2018 · ischemic colitis in Digestive Health

I am so sorry to hear of your issues with you colon. I had the same thing several years ago. After having several episodes of ischemic colitis, my doctor referred me to a surgeon who scheduled me fo surgery. I had several inches of my colon removed and while I hurt like H–L, for several days; I have had very few episodes in fifteen years. I encourage you to consider having the portion of your colon removed that is affected. I know the pain you are having or at least I think I do as I went through a lot of the same pain. God Bless you and I hope you will get the help that you need. Hugs to you.

Oct 17, 2018 · Pulmonary Fibrosis* in Lung Health

Hi. I just wanted to respond to your post as I wanted to let you know that the meds you have listed; I am only familiar with one. My husband was diagnosed in May with IPF and elected to go on Ofev. We finally finished the paperwork and got approved from the manufacturer of Ofev to receive the medicine free of charge. There are many grants that are available to you depending on your income. In our case, we had to go directly to the manufacturer and were qualified. We received the meds and within the first month, my husband was feeling much better and his breathing test increased by a large number. He had the overnight test for oxygen prior to taking the meds and tested positive for needing oxygen during the night. After being on Ofev for a month, he had an additional test and he did not need the meds. While I understand that medicine for one person is not the same for another person. I just wanted to let you know that some meds do work. My husband who could not go out to pick up the paper and be exhausted can not do so many things that he had not been able to do. Ofev may not be the right medicine for you but I would encourage you to try something that will slow the progress of the disease; while it may not be a cure, it can certainly make ones life easier and the quality of life is so important with this disease. I being the wife hate seeing the degradation the disease causes; I also rejoiced at the sight of him feeling so much better and returning to the man I married. With that said, I hope you will give some thought to the medicine that is available to you. Best regards. A loving wife.

Oct 2, 2018 · Joint and muscle pain in Bones, Joints & Muscles

Thanks for your response. I think they are all baffled. I willl see my Rheumatologist again the 17th of this month. I did not mention that the sed rate continues to be elevated on each blood work up I have.. Mystery!!