Argh! I can’t breathe very well. I feel like my lungs are full of cotton balls and I’m just not getting enough air. Don’t know if this is normal or not, but it seems to be worse last night and this morning then in the past. I’m going to try and get in touch with my doc and see if this is something I should be worried about or if it is just par for the course.
Michael
3 comments:
Mike,
I think I've come down with a bit of a cold and I've been having a little bit of a problem breathing the past couple days (especially at night). I feel like I'm breathing really dusty air and the hacking cough that I thought had disappeared for a while seems to be coming back.
Maybe I've got strep like you!
Your swollen ankles reminds me so much of me when I first went to the doctor. My family doctor was very perplexed when I saw him and he sent me to a rheumatologist, who took some of the fluid from one of my ankles for testing and then had me go in for a chest x-ray. I thought that was very strange, but it is what eventually led to my diagnosis (after a bronchoscopy which was inconclusive, and later a mediastinoscopy). The swelling in my ankles went away after a couple weeks. I did have some joint pain in other joints for a while, but that has pretty well gone away too. For a couple months after the initial x-ray was the constant worry that I might have lymphoma and not sarcoidosis.
I'm so glad I haven't had to go on prednisone. From what I've heard about it from those that have taken it, I'd rather put up with the symptoms of sarc than take prednisone.
Take care and I hope you are feeling better!
Scott
Scott,
Thanks for your post! Your story sounds very familiar. I’m surprised that they didn’t put you on prednisone though. From everything I am reading and being told this is the primary way to treat sarcoidosis. The real danger is leaving it untreated as the effects can cause permanent damage to organ tissues.
You mentioned that you having a hard time breathing too. When I called my specialist they opened up an appointment for me to come in first thing in the morning and I need to go get a chest x-ray tonight. It usually takes a week or two to get in. He appears to be taking this seriously. I don’t know that it is really important or not, but they are treating it as if it is. I’ll let you know what they find. You might consider at least calling your doctor as well and see what he has to say.
Good luck Scott. Hope you get breathing better.
Michael
Hi, Mike,
I have stage II pulmonary sarcoidosis just diagnosed after coughing for over a year. ((54 yo female previously healthy). I had a bronchoscopy biopsy to rule out pneumonitis (allergic reaction)and infection prior to starting prednisone.
On the breathing thing, I too have the heavy chest and cotton ball feeling. Though sarcoidosis is largely a restrictive lung disease, my pulmonologist says there are obstructive components too, so albuterol inhaler helps the heavy chest thing by opening the airways.
Let us know what your PFT's show. (pulmonary function tests). My DCLO
(Oxygen diffusion capacity) is at 65% of normal yet because I have big lung volumes my oxygen saturation is at 98%.
I've just started the prednisone. I'm taking 40mg every other day (the doctors are just shooting in the dark when it comes to dosing-I've seen three pulmonologists and they all have different approaches.) So far after the second dose, my breathing is a little easier, but I'm wired and hungry just like you.
Thanks for the blog.
Johannah San Carlos, CA
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