Kathy G
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I am going to talk with the pulmonologist (ILD clinic UCLA) on Tuesday regarding Rituxin. I guess it takes awhile to get approved anyway so I have some time to research and think. I belong to a Facebook group and several of those people say it was life changing. Others said it did not help them at all. I almost want to say I will try anything at all at this point. So miserable.
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Hi Don,
There is one co-morbidity and it’s 30 pounds. Other than that, everything is in good order. I may not have a choice, but I am out of my mind with fear about even thinking in that direction. My antigen is bird feathers and droppings from sleeping on down pills and duvet. I did really well after getting rid of all of that. Tearing the house apart, cleaning all filtration, adding ultraviolet light on the HVAC, air purifiers and the list could go on. Thought all was well. I just don’t understand what happened this time. I was a little short of breath for about a year off and on but could make it to appointments with 02 sats dipping to about 85 but jumping back up pretty quickly. And then…. one day… it just all crashed. The fibrosis is much worse by CT. Now I am walking about 3 feet and stopping. Huffing and puffing like a steam engine. Tuesday I go to see a new pulmonologist at the ILD clinic at UCLA. He is going to work with my current pulmonologist also at UCLA. He is going to try and get Rituxin approved. There has been some success with it. There are a few people on the HP website who have had it and swear by it. Others say it didn’t do much.
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Hi Donald,
I am 58 and I have cHP with pretty severe pulmonary fibrosis. I have been on and off cellcept and Prednisone throughout the years. I wish I would have never gone off cellcept because maybe I wouldn’t have declined. I have gone to Cleveland Clinic, Mayo Clinic, USC and at UCLA for the past 11 years. Rituxin is very controversial but is a last ditch effort. I was not on oxygen until this most recent flare. I was doing really good and could walk having a normal life. Now I can’t walk three feet without desaturating down into the low 70’s.
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I have been on OFEV for about a year and hit the wall. This is the worst exacerbation I have ever had and am worried I am not going to bounce back. My FVC dropped by half from last year and DLCO is 16%. Having a very hard time breathing. Fibrosis has increased on the CT scan. I have been very slowly declining over the past 11 years, but manageable. This is like I fell off a cliff. Can’t walk more than 3 feet without o2 sats dropping into the 70’s. On the highest dose of cellcept and OFEV. One pulmonologist is talking about trying Rituxin. Of course I keep hearing transplant. Scary place to be.
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I would have never thought of the covid vaccine. For me, I think I got worse after the second shot too. Did your 02 sats decrease too?
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@wendy-dirks
I am going through the same exact thing as you right now. Very, very scary. I have had AE, but never like this. I feel like I fell off a cliff! I am going for a PFT next Tuesday to see the extent of the “damage” My CT scan shows more scarring. I don’t know what happened, but it happened overnight. My pulmonologist mentioned that he may try Rituximab. I don’t know anything about the medication you mention, but I will look it up and mention it to him. I hope you are feeling better today. Stay strong!
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I have asked my immunologist, pulmonologist, rheumotologist and cardiologist about the elevated CRP and how to lower it. No one knows!
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How can you get rid of inflammation? I have been trying for years and my crp is always extremely high.
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Hi Don,
I had a cryobiopsy which yields the same results as a VATS within 7%. They were very careful to take minimal tissue as I don’t have much left to give. I was diagnosed with biopsy and CT scan and a couple of years ago the cryobiopsy. About 20% of HP people continue to advance with fibrosis. I am one of those people. I did all of the environmental things too. I have a fairly new home so I didn’t have mold issues, but was tested for everything. There is not a flake of dust, mold anything of concern. I have no idea….