Idiopathic pulmonary fibrosis

[jingsdog]

I have had a pretty rubbishy few months now with worsening symptoms to my body through Systemic Sclerosis ...and severe osteoarthritis in my joints. Every time I have to go to hospital I learn something new, this time...idiopathic pulmonary fibrosis...this is a downward slope for my lung damage. My respiratory consultant is going to put me on a new medication that he has to get permission to prescribe as it is very expensive so he needs to request it for me. Not had any word yet so...apparently it has a side effect of diarrhoea which can affect about 30% of patients...so here's hoping it wont be me as my loo is upstairs! I have really bad pains in my knees and ankle so not able to move quickly if I do need to go!

Anyway, I just wondered if anyone else was diagnosed with this...as I read from the pamphlet about idiopathic pulmonary fibrosis that it was quite rare in this country. So if anyone else has this would love to hear from you.

[MFC911]

Hi,

This all sounds very familiar to me. I too have systemic sclerosis also "IPF"

You are not alone! The joint pain is off the scale. I find the only way to cope most days is with steroids, oxycodone, paracetamol and codeine. Obviously that little lot makes me tired so getting balance right is the trick.

I'm very interested in this medication that your rheumatologist wants to put you on, it isn't "Retuimab infusion" by chance is it? I got the same: "we have to apply for this as its £20k a year". I got permission, got the infusion and I don't think after two years it has made much difference. Who knows?

What would I be like without it? Just to put the real "tin hat" on it my wife has just, this week been diagnosed with lung cancer. Ain't life great!

All the best. I hope it all goes well for you.

Regards. Mark.

[jingsdog in reply to MFC911]

Not sure what the new meds will be as yet as still not been prescribed. Just have to wait and see. Was told that once on it I may have my mycophenolate reduced but rheumatologist is waiting to see how it goes. Thank you so much for reply and will get back to you once I know what is happening. So sorry about your wife...rotten news there! But, there have been some good recoveries on lung cancer ...not the death sentence it once was...so fingers crossed for her!

[pallinurse]

Hello, Dear! To make the most of your lungs, if you have any acid reflux make sure it is being treated. Decreasing gastric acidity and following recommendations for GERD can help if any of the damage is from acid being aspirated into lungs. My lungs were getting very bad, and when I was treated for the GERD (I have to stay on 40 mg of Prilosec) over several months some of the damage improved and I had less shortness of breath.

Sending you love from Arkansas, USA!