Suzanne R Brennan

[Suzanne R Brennan]

I am so very sorry for your loss. Hold your memories close so that you have them when you need them the most. IPF is an insidious disease and one that many family members and friends struggle to understand. As a fellow IPF sufferer, I do understand the heartbreak that comes along with it.

Take care of yourself.

[Suzanne R Brennan]

I was also informed of this news.I am hoping we will get more details as to why in the coming days.

[Suzanne R Brennan]

I had been in this trial since May 2019. Yesterday trial participants were notified that the trial has been cancelled effective immediately. Not much yet in the way of details but hopefully we will get some explanation in the coming days as to why.

[Suzanne R Brennan]

After about 6 months on OFEV, I started experiencing some gum line redness, swelling and pain. My regular dentist recommended I see a periodontist, which I did. His office did a very “deep” cleaning and then recommended that I see my regular dentist every six months and the periodontist every six months, so having my teeth cleaned every three months. While the listed side effects for OFEV didn’t mention gum issues, my pulmonologist suggested that between that and the constant GI issues, I switch to Esbriet. I did that over two years ago and while I get an occasional flare up of redness and/or swelling, the pain has gone away.

Also, the periodontist prescribed a mouthwash they called “magic mouthwash” to rinse with twice a day. It had an antibiotic, an anti-fungal, lidocaine and one other ingredient that I can’t recall now. It had to be made up at a compounding pharmacy and refrigerated. I used it for about nine months or so and it helped quite a lot. I also started taking a probiotic during that time, which I still take.

I’m not sure which of the above helped or if I needed all of them but I rarely have problems now. I hope this is helpful.

[Suzanne R Brennan]

One additional thing is that I do a series of stretches before I even get out of bed each morning. I am still on my nighttime O2 while doing it. I do eight leg raises on each side, I do an exercise where I lift my knees, cross them over each other and rock from side to side, which loosens up my hips. I do a cross over leg exercise where I stay flat on my back but take first one leg and cross it over may body as low as I can for ten or so seconds and then the other. I do clam shells for eight on each side which also helps open the hips, and I stretch out as fully as I can with arms overhead and legs out straight, also for about ten seconds.

Then, I get out of bed, reach down towards my toes to let my back and hamstrings stretch, again for about ten seconds. I do eight arm circles, as wide as I can, eight forward shoulder rolls and finally eight neck rolls.

This all helps me to get out of bed and walk without being too sore and face the day! I have been doing this for well over a year after some physical therapy on my shoulders as the therapist said one reason for my shoulder issues was that my muscles were all so tight. She helped me to devise this program. While it sounds long, it really only takes about 5-7 minutes and is so well worth it!

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