-
conni replied to the topic Deciphering spring allergies from worsening PF symptoms in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 3 weeks ago
love the gladiolus,crocus,forsthyia ,cherry blossoms,but oh my the allergies make my breathing so much worse. am on pred now 30 mg.day with exasperation trying to still do rehab but the allergies dont help a bit. i do claritin pill,azelestine 1% nasal spray and still have trouble,BUT soon it will be to hot and another set of troubles!!
conni b
-
conni replied to the topic Deep Tissue (or red light) Laser Therapy in the forum Using Our Forums 7 months, 1 week ago
I am also very interested in laser therapy. Don’t want to increase collagen for sure. When we have used it in the dogs it was for healing wounds etc,so why is this different?
conni borwick
-
conni replied to the topic Split Ofev doseages in the forum Ofev (Nintedanib) 9 months ago
I think the one reality here is that Ofev does not cure or fix anything,like breathing,it simply slows the progression of the disease. Doctors for sure will never do something the drug company doesn’t reccommend or fda approves. But as a thinking human being I can make choices on dosage.
Since I do not have ipf but rather hypersensitivity…[Read more]
-
conni replied to the topic Leg muscle weakness side effect of OFEV in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
I have been struggling with leg muscle pain for over a year. I exercise as much as I can with breathing issue. I kept wondering what else could be causing this weakness and discomfort. I rode horses for 40 years,was a runner, and ran agility with my dogs ,so my leg muscles were strong. Wish we could get a response from ofev.
-
conni replied to the topic The Harsh Realities of Lung Transplantation in the forum Pre/Post Lung Transplant 1 year, 4 months ago
I was 75 yrs old when the pulmonologist at Shane’s hospital suggested I consider a transplant. I am on o2 at night and when I exercise. I read the entire protocol on their website and it was very complete. A day to day synopsis from evaluation to surgery.
I also have osteoporosis and I factored that in my decision to not go for an evaluation. A…[Read more]
-
conni replied to the topic Systemic Enzymes, with or without prescription anti-fibrotics in the forum Diagnosis Information and General Questions 1 year, 9 months ago
I use Chinese herbs from my doctor and have had minimal side effects from the Ofev when I take them first thing in the am.
-
conni replied to the topic Breathing Exercises for PF Rehab vs Stress Management in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
Same exercise Che ghung or qu gong ,many different spellings 😬 I also Find I am more relaxed and energetic. It also seems to help if I am having a bad coughing spell. Acupuncture also really helps me relax and depending on where she sticks me…can super energize me, very weird. I know you are supposed to do the pulmonary rehab exercises daily,I…[Read more]
-
conni replied to the topic Breathing Exercises for PF Rehab vs Stress Management in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
My acupuncturist suggested Che hung similar to tai chi great tool. You can find videos on line I have 2 I like one is a full hour the other 20 minutes these are calming not just breathing. I also like a pranayama breathing class it should not make you anxious you should be comfortable with the inhale exhale at your own pace. There is no right or…[Read more]
-
conni replied to the topic Auto Immune in the forum Using Our Forums 2 years, 2 months ago
I cannot get the article you referenced and am very interested in it. When I click on it it just says page not found. Also where are you getting your laser treatment
thank you so much for a really interesting thread
-
conni replied to the topic Hypersensitivity pneumonitis /Cellcept question in the forum Diagnosis Information and General Questions 2 years, 9 months ago
hi,
I have been diagnosed with HP also and could not take cellcept or imuran. I have been on Ofev with minimal side effectsand the green tea extract., and am hopeful that the studies are correct and it slows the progression. I live in Florida, today the heat index was 110 degrees and we have really high humidity. I could only be outside for a…[Read more]
-
conni replied to the topic Tailored Exercise Programs Beneficial for Patients with IPF/PF in the forum Pre/Post Lung Transplant 2 years, 9 months ago
Pulmonary rehab was so boring for me 🥴 I have always been active,gone to the gym,etc. all my life. Always my exercise was outside based. Training horses,then dogs,running agility,tracking etc. working my border collie on sheep…so my emotional painful struggle is trying to get excited about exercise inside😩I have a couple of good programs from…[Read more]
-
conni became a registered member 2 years, 10 months ago
Hello Conni, thank you for joining your pulmonary fibrosis forum. Welcome!