Acute Exacerbations of Idiopathic Pulmonary Fibrosis (IPF).

[michael-lamkin]

Hi Charlene

I personally have not an acute exasperation but I can imagine it must be very frightening. My private primary physician (before I started using the VA)  mentioned 6 years ago the  scaring on my lungs and kept asking if I’d ever had Valley Fever to which I always responded no. Actually 18 months ago I was diagnosed with VF 6 months after being diagnosed with pneumonia (An incorrect diagnosis). Although I was just diagnosed with the IPF 3 months ago I had some pretty tough experiences with the VF some of which, in retrospect, I thus could have been the underlying IPF.  I responded before regarding your inquiry regarding exactly what Valley Fever is but I accidentally deleted my response.  ☹️  I could go on for a long time regarding what FV is so I’ll just say it’s a fungal disease which is usually airborne and breathed in by those infected. There is also no cure for VF and the best a person can hope for is eventual dormancy. Although the fungus is pretty much limited to the SW in the U.S. it is also found in some South American countries. Please check the internet for more info. as there’s a lot more to the disease.

Have a nice day!

Michael

[Charlene Marshall]

Hi Michael,

Thanks for getting in touch regarding this thread and sharing your experiences. Yes, acute exacerbations (AE) are very scary events for patients with IPF, and unfortunately something that has had long-lasting effects for me since my own AE in May 2017. Not only are those effects physical, but emotional and mental as well as it was a very scary time. I think I even have some PTSD following that AE ….

Another member of our forums also explained valley fever to me not that long ago, so no worries about deleting your response by accident 🙂  I’d actually never, ever heard of this but someone else in our forums community had it as well! I believe he said it was following a prolonged episode of bronchitis or pneumonia as well, so I am starting to wonder if it is more common that I think? I wonder if it exists up here in Canada as well, as it isn’t something I’ve ever experienced or heard of being at risk for. I’ll do some more research on it for sure, just out of curiosity but I am sorry that you experienced it first hand.

Thanks for getting back in touch Michael and I hope you’re having a nice week. Hard to believe it is the weekend again tomorrow, the summer is just flying by isn’t it?

Warm Regards,
Charlene.

[charles-whittington]

I had an acute exasperation this summer but was lucky enough to be at UAB where they did the experimental treatment with the 9 plasma exchanges, 2 rituximab infusions and 4 IVIG infusions. My June scan was highly ground glass and the August scan had most if it cleared up. I am on oxygen but able to cut my grass and do other normal activities. My Pulmonologist said I would have died without the treatment. I also had many people praying for me. This treatment is called the Duncan Protocol and will be offered in 4 sites as a clinical trial this fall (Birmingham, Pittsburgh, Philladelphia, and a school in California). It will be randomized with some patients getting the standard treatment of antibiotics and steroids and the others getting the full treatment. His results are 60 % of the patients showing good indications. This does not cure or reverse IPF. It treats the exasperation as an auto immune problem.

[Charlene Marshall]

Hi Charles,

Thanks so much for getting in touch regarding this topic. Not many can contribute their personal experience with exacerbations (thankfully!!) so I didn’t know how many replies we’d get. I’ve also had an acute exacerbation back in May 2017 and it was absolutely terrifying. Not only did it leave some serious physical effects on my lungs, but emotionally as well and I’m working through some PTSD as a result.

I’ve actually heard of this plasma exchange option as a treatment for exacerbations – another member of our forums had this done as well, and I know he is pleased with how he is managing after it. Glad your scans improved following this treatment regimen, and so glad you can still do tasks that you enjoy around the house (ie. cutting the grass) even if it is with supplemental oxygen.

Thanks for sharing information about the Duncan Protocol, this actually gives me a lot of hope because exacerbations are scary and what worries me most if it were to happen again is that there is no option – just the “luck of the draw” whether or not you survive. Glad it will start being tried and studied at different centres this fall, that is great news. Even a treatment for an exacerbation is a big step in the right direction for patients like us!

Thanks for sharing 🙂
Charlene.