Forum Replies Created
October 19, 2021 at 4:26 pm #30233
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 Rheumatologist already said a third dose necessary. This has only just been approved for immuncompromised in Australia ( yes, a lag) so I hope to have in 2 months time.
It has been a constant fear in the back of mind about catching COVID while on immunosuppressive meds. Particularly with Rituximab depleting B cells.
Your stories provide some comfort that it is possible to survive COVID with vaccination. Thank you.
September 27, 2021 at 4:15 pm #30073
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 worse in the morning. I usually do a hand cupping / tapping chest massage while in the shower that helps bring up the mucous. When I asked my Lung Physician about it he just said difficult to treat and use cough lozenges. I have found the honey and lemon drops to be soothing. I was interested in the comment that the use of the air flow gadget was helpful.
- This reply was modified 3 months, 1 week ago by Charlene Marshall. Reason: formatting to remove code
August 20, 2021 at 12:33 am #29623
<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>
July 24, 2021 at 2:22 am #29315
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 option. Primary medications are / were Tacrolimus, Azathioprene and IViG. I am not on oxygen.
Your fortunate you can maintain employment. At times I could not walk or talk so had to retire. The medications worked well for me up to this year when I had an episode of increased active Pulmonary Fibrosis. This was treated with very high dose Prednisone ( in Hospital) and on discharge approval for Rituximab treatment.
Its incredible how the autoimmune diseases target specific organs or parts of our body. It’s also great that research is making inroads into our conditions.
My doctors advised I could have died in 2015 and I’m so grateful to still be here to have met my grandchildren.
I wish you every opportunity for improved health. Don’t sweat the small stuff. I found in my darkest hours I always maintain ‘Hope’ – it helped me through. Fay
June 24, 2021 at 9:42 pm #29006
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 PF lung scarring. Doctors, think a problem with rogue B cells of the immune system. These B cells have their origin for adults in the bone marrow ( but initially generate in the fetal liver ) so maybe a genetic thing. Anyway, I’ve undergone treatment with Rituximab to eliminate the B cells. Still have the cough, breathlessness ( but not as severe), heart palpitations have eased and voice not as croaky. Of course these are all symptoms being treated.
I am heartened by the ongoing research at the cellular level for the causes of autoimmune disease and PF / IPF.
Early days yet – I’m hoping for a reprieve for all of us.