Fay

PF – 7 years diagnosis. At my worst, I would use my office chair and wheel my way through our one level house to vacuum. Now that we’ve downsized I’m in a 2 story town house and have a vacuum on each floor, cleaning caddy for upstairs & downstairs. As my hubby has Dementia we have a weekly cleaner in now for vacuuming and steam mopping. They, als…[Read more]

Hi from Australia- reassuring to hear your comments on a third vaccine dose. I had a Rituximab treatment in May/June 2021 and had to wait 3 months before the vaccine dose. To prepare for Rituximab I went off Tacrilimus completely and Immuran for 2 weeks after. I also take a maintenance dose of Prednisone.

Having second dose of vax tomorrow and my…[Read more]

<p style=”text-align: center;”>It was with a collective sigh of commiseration  when reading your stories about ‘the cough’. I was diagnosed with PF in 2015. It was only this year after an exacerbation requiring hospital that I developed the cough. I had read that PF cough was dry but as you all described it is wet and productive. Mine is wors…[Read more]

<p style=”text-align: left;”>Polymyositis and Pulmonary Fibrosis here. Raynaud’s symptoms as well  – White tips at end of fingers, tingling and sometimes sore. I hold my hands in very warm water.</p>
Fay

Hi Marisa – I do share some diagnosis with you. I was diagnosed with the ILD – IPF in late 2014. In early 2015 a second opinion and further tests indicated that I actually had Polymyositis first that resulted in Pulmonary Fibrosis. It was a shock to receive such a life changing diagnosis.

I live in Australia so at my age a lung transfer is not an…[Read more]

Hi Everyone – thanks for your stories. I was diagnosed in 2014 initially IPF but after further testing and an array of other symptoms in 2015 re-diagnosis to Autoimmune Polymyositis causing PF. Medications to dampen the autoimmune system included IVig, Tacrolimus, Azathioprine & Prednisilone. Earlier, this year I was hospitalised with an onset of…[Read more]